Mechanical ventilation beyond the intensive care unit

CHEST VOLUME 113 / NUMBER 5 / MAY, 1998 Supplement

Mechanical Ventilation Beyond the Intensive Care Unit Report of a Consensus Conference of the American College of Chest Physicians Barry J. Make, MD, FCCP (Chairman); Nicholas S. Hill, MD, FCCP (Editor/Author); Allen I. Goldberg, MD, FCCP (Editor/Author); John R. Bach, MD, FCCP; Gerard J. Criner, MD, FCCP; Patrick E. Dunne, RRT; Mary E. Gilmartin, RN, RRT; John E. Heffner, MD, FCCP; Robert Kacmarek, PhD, RRT; Thomas G. Keens, MD, FCCP; Susan McInturff, RRT; Walter J. O’Donohue, Jr., MD, FCCP; Edward A. Oppenheimer, MD, FCCP; and Dominique Robert, MD

Chapter 1. Introduction: New Developments In most patients, mechanical ventilation is a short-term treatment used for up to 7 days to support or replace spontaneous breathing until the cause of respiratory failure resolves or results in death. In patients who receive mechanical ventilation for $7 days, 5% remain unweanable after 4 weeks1 and have been classified as chronic ventilator-dependent patients. After the resolution of their acute illness, however, it is more appropriate to refer to these patients as long-term ventilator-assisted individuals (VAIs). This term recognizes the individuality of these patients and their potential for satisfying and, in some cases, productive lives despite the need for ventilatory assistance.

Although the number of chronic VAIs in acute care hospitals is small relative to the total number of patients receiving mechanical ventilation, VAIs consume a disproportionate share of health-care expenditures and occupy ICU beds for prolonged periods. VAIs, therefore, pose a unique set of questions for the health-care team. When and how can VAIs be transferred from the busy resource-intensive ICU? What is the most appropriate and cost-effective site for optimal long-term care that will allow VAIs greatest independence, function, and quality of life? How and when can noninvasive Copies of this supplement can be ordered from the American College of Chest Physicians by calling 1-847-498-1400 or 1-800343-2227.

mechanical ventilation be implemented, and can it decrease the need for more invasive and costly forms of mechanical ventilation (such as tracheostomy with positive pressure ventilation [PPV])?

The American College of Chest Physicians (ACCP) first addressed these questions in the 1986 Consensus Conference on long-term mechanical ventilation and then developed and published comprehensive guidelines for the treatment of VAIs.2 Since that time, however, not only has new information about the number and location of patients receiving long-term ventilation, as well as about the costs of their care and their outcomes become available, but also two major developments have had a marked impact on the care of VAIs. One of these developments is that the health-care environment has placed increasing emphasis on reducing the financial costs of medical care through earlier discharge of patients from acute care hospitals to newer, less costly types of medical facilities for continued treatment.

Discharge from intensive care settings to the newer sites for long-term care, when care for the VAI is not possible in the patient’s home, frequently not only reduces costs but also improves the patient’s quality of life. Further, the number of non-ICU sites available for acute, intermediate, and long-term care of ventilator-dependent individuals (such as specialized respiratory care units, subacute care units, and skilled nursing facilities) has greatly expanded since 1986.

The other major development with a marked impact on the care of VAIs is that noninvasive ventilation (NIV) is increasingly emphasized in clinical situations that include both acute and chronic respiratory failure. The expanding use of NIV helps to prevent emergency endotracheal tube ventilation, particularly in patients with exacerbations of COPD, neuromuscular disorders, and thoracic skeletal disorders.

This consensus statement was prepared under the direction of the Health and Science Policy Committee (HSPC) (formerly known as the Consensus Committee) of the ACCP, whose members represent each of the ACCP sections. After careful deliberation by the members of the HSPC, the subject was chosen as a focus topic for consensus development based on recommendations from the membership of the ACCP. In 1993, a chair was chosen who formed a consensus panel of 14 acknowledged experts in the field of mechanical ventilation, with broad scientific and clinical representation from around the world. This consensus statement is based on their extensive experiCHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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ence and available evidence. Each member of the committee was charged with reviewing the literature and writing a portion of the document. Following the conference, the statement was edited for content by the panel editors and for format and clarity by a professional editor.

It was again reviewed and approved by the consensus panel. The final document was reviewed and approved by the members of the ACCP HSPC in October 1997. It was discussed by the ACCP Board of Regents in October 1997 and, after revisions, approved in February 1998.

The purpose of this report is to provide principles and guidelines for the selection and treatment of VAIs in non-ICU sites within the evolving health-care environment in the United States. Recommendations are provided on the continued care of VAIs in available sites, on the use of NIV (including both PPV and external negative pressure ventilation [NPV]), and on the use of invasive ventilation (via endotracheal tube or tracheostomy, with PPV). The recommendations are based on information published in medical journals. It must be recognized, however, that the available literature does not sufficiently address all of the issues in this evolving field; thus, the recommendations reflect the opinions of experts who represent a variety of healthcare disciplines and who participate routinely in the

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treatment of VAIs. It should also be recognized that many of the guidelines resulting from the 1986 Consensus Confer-ence, such as the medical and patient stability issues to be considered prior to transfer to an alternate care site, and the key elements of a comprehensive plan of care, remain relevant and should continue to be followed.

Management of VAIs is the focus of chapter 2, which first considers the problem of increasing numbers of patients and increasing costs and then treatment objectives and goals, sites for care in which the objectives and goals may be achieved, criteria for discharge to those facilities, and steps for making decisions on the most appropriate site for an individual patient. Chapter 3 first describes the types and applications of noninvasive mechanical ventilation, now being used more and more successfully (and cost-effectively) in adults, and then of invasive ventilation. Chapter 4 explores planning for discharge, care, and rehabilitation of ventilator-assisted patients; chapter 5 looks at the equipment and resources needed for care after discharge. Management of pediatric patients is discussed in chapter 6, which describes special considerations concerning pathophysiology, criteria for discharge, sites for care, ventilation techniques, and ventilation equipment and use. Chapter 7 briefly explores ethical issues.

Mechanical Ventilation Beyond the Intensive Care Unit

Chapter 2. Management of VAIs Today the management of VAIs is affected by the problem of increasing numbers of patients and increasing costs. This chapter considers this problem, describes the objectives and goals of treatment for these patients, and presents criteria for long-term mechanical ventilation beyond the ICU. It also discusses the sites in which VAIs may be treated, outcomes of care in those sites, and criteria for discharge to non-ICU settings, and indicates how to make decisions on the most appropriate site for long-term mechanical ventilation. The emphasis throughout this document is on providing the best possible care in a setting that is both appropriate and cost-effective.

The Problem: Increasing Numbers of Patients, Increasing Costs Advances in medical care and the acute application of invasive mechanical ventilation have resulted in increased survival of critically ill patients, some of whom may become dependent on long-term mechanical ventilation.

Increases in both the number of patients receiving shortterm invasive mechanical ventilation and the number of patients requiring long-term ventilation can be documented by comparing studies performed in the last decade. In 1983, a statewide study of acute care facilities in Massachusetts found that 147 patients were ventilator dependent for .3 weeks.3 By extrapolating this demonstrated prevalence of three long-term ventilator-dependent patients per 100,000 Massachusetts residents to the general US population, the study estimated that there were 6,800 long-term ventilator-assisted patients nationwide. The study also estimated that the cost of hospitalization for individuals receiving long-term ventilation was $1.7 billion per year. This represented about 1.5% of total hospital costs in the United States in 1983.4

By December 1990, estimates had nearly doubled.

Based on their telephone survey of 300 randomly selected respiratory care department directors and 100 pulmonary physicians regarding their long-term ventilator-assisted patients (defined as requiring mechanical ventilation for at least 6 h/d for $30 days), the American Association for Respiratory Care (AARC) and the Gallup organization5 estimated that the number of patients nationwide receiving long-term ventilatory support was 11,419. Average daily cost of care was estimated to be $9 million ($789 per day for each VAI) with an annual cost of more than $3.2 billion.

In both these studies, most long-term ventilator-assisted patients were found to be in acute care hospitals. In Massachusetts, 62% were in this setting, with 22% in chronic care hospitals and 20% at home.3 In the 1990 AARC-Gallup poll, respiratory care directors and pulmonary physicians estimated that only 25% were eventually discharged home, with 20% discharged to nursing facilities.5 The directors and physicians also estimated that 29% of long-term VAIs remained in acute care hospitals because of insufficient reimbursement for alternate site care or because of the lack of beds in alternate facilities.

Other studies have also demonstrated that most longterm ventilator-assisted patients continue to be located in

acute care hospitals. For example, a 1987 study found that 50 to 80 patients in Chicago were waiting for transfer from acute care hospitals to the 33 beds available in the two chronic care facilities that accepted long-term VAIs.6 For another example, a study of 99 hospitals in Pennsylvania7 found that most patients received long-term mechanical ventilation in the ICU, with 25% of patients located in step-down units or on the general medical floor of an acute care hospital. One year later, a report on the discharge status of these VAIs revealed that 21% were still in the acute care hospital, 22% were discharged home, and 33% had died in the acute care hospital while awaiting placement in an alternate setting. The costs of this care for clinically stable VAIs in ICUs were high, ranging from $800 to over $1,100 per day ($24,000 to $33,930 per month; $288,000 to $407,000 per year).8-12 These patients also require a large portion of available resources. In 1989, for example, 227 patients who received prolonged ventilation ($7 days) in 12 different hospitals consumed more than one third (37%) of all ICU resources.13 Compounding the high cost of caring for VAIs in the acute hospital setting is the failure of the Medicare Prospective Payment Scale to reimburse hospitals adequately for the long-term care of these patients because of the diagnosis related group (DRG) payment system. For example, in 1987, when hospital costs and Medicare DRG reimbursement were compared in 150 medical and surgical patients receiving mechanical ventilation for at least 2 days in three different hospitals in the Rochester (Minnesota) area, the average cost per patient was found to be $31,896 while the average reimbursement was $10,981.

This resulted in a total loss to the three hospitals of more than $3 million per year.14 Similar findings were also made in Chicago.9 In both studies, long-term ventilator-dependent patients were defined neither by a single DRG class nor a single major diagnostic category. In the Rochester study, for example, only 10% of patients were included in DRG 87 (pulmonary edema and respiratory failure), and the remaining 90% were spread among 52 nonrespiratory DRG categories.

The Health Care Financing Administration (HCFA) attempted in 1987 to rectify the coding problem and adjust reimbursement by creating two new DRGs (474 and 475) for mechanically ventilated patients. However, most patients (77%) still did not qualify for a higher level of reimbursement,14 and the extensive financial losses incurred by hospitals in treating Medicare patients receiving long-term mechanical ventilation were not substantially alleviated.9 Recommended changes in the present Medicare DRG payment system to reimburse hospitals more equitably for long-term ventilator care include making mechanical ventilation a defining factor in DRG assignment, reimbursing intermediate care units that treat long-term ventilator-assisted patients as rehabilitation units (thereby reimbursing the actual cost of care and providing an exemption from the DRG payment scale), and providing a per diem add-on to the DRG payment rate for each day of long-term ventilator treatment.9 A lack of detailed information on costs, length of stay, and outcome of patients receiving prolonged mechanical ventilation is a major obstacle in setting a national policy CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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for reimbursement. Studies to date have examined a small number of patients in one geographic area and thus have provided little detail on long-term ventilator management’s direct and indirect costs (that is, on overhead, salaries, and benefits for personnel such as nurses, respiratory therapists, and physical therapists). Medicare, however, has attempted to collect more representative national data by establishing four long-term ventilator demonstration sites to assess the costs and quality of outcomes for VAIs.15 Preliminary data from one site have reemphasized that the present DRG payment inadequately reimburses hospitals for the care of VAIs.16 The preliminary data also showed a higher average financial loss for patients referred for weaning from mechanical ventilation with a tracheostomy already in place.

Research Recommendations: Additional data are needed to document the costs of care for VAIs in intermediate and long-term care facilities. Data are also needed on survival, complications, physiologic consequences of care, and quality-of-life outcomes of VAIs in intermediate and long-term care facilities. These are required so that healthcare professionals can determine the optimal site for long-term ventilator care. These data should include outcome comparisons of invasive vs NIV. Consensus Recommendation: Reimbursement should be available to provide for sufficient resources to meet the respiratory and other needs of VAIs outside the ICU. These resources include nonrespiratory care trained personnel, equipment, and equipment maintenance in the home and other alternate sites. Regional integrated systems should be developed to meet these needs and provide cost-effective management of VAIs in a variety of settings. Costs should not be the sole factor determining the site of care; the ability to meet patient needs and achieve patient goals is also of paramount importance.

Objectives and Goals for VAIs Determining objectives and goals for the management of VAIs not only contributes to the best possible care but also enables decisions on sites and resources that will best enhance the patient’s potential and make care more cost effective.

Three objectives guide the management of VAIs: (1) treat the patient’s acute illness; (2) wean the patient from mechanical ventilation if possible; and (3) enhance the patient’s quality of life.

The acuity and severity of the pathophysiologic processes determine the objective. For example, treatment of a patient requiring mechanical ventilation because of overwhelming pneumonia with sepsis and hypotension will focus on treating the acute presenting disease and its 292S

physiologic consequences. Then, as the patient’s pneumonia improves and hemodynamic and respiratory status stabilize, the management objective will become weaning from mechanical ventilation. Management objectives, however, are not mutually exclusive. If the pneumonia patient just described remains ventilator dependent for a prolonged period, management objectives for the patient and the health-care team might be both weaning from the ventilator and enhancing the quality of life through rehabilitation to allow the patient to perform activities of daily living independently.

Weaning from mechanical ventilation is a management objective only in patients who are in medically stable condition. Respiratory care requirements for weaned patients may continue to be high, but monitoring requirements are generally less than in treatment of acute critical illness. However, the initial weaning of a patient with COPD will require much more monitoring and care than the weaning of a healthy individual from ventilation shortly after an uncomplicated surgical procedure.

Some patients with severe respiratory dysfunction cannot be weaned from mechanical ventilation despite repeated attempts by an experienced respiratory care team.

Once they are medically stable, respiratory care and monitoring needs for these patients are lower, and rehabilitation may help to ensure an improved quality of life and maximal independence in a setting that requires fewer personnel and resources.

Goals for the management of VAIs, as outlined in the 1986 ACCP Consensus Conference, include the following: providing an environment that enhances the individual’s potential; improving physical and physiologic function; reducing morbidity; extending life; and providing costeffective care.2 These goals may be applied equally to each of the objectives for treatment. For example, improvement of physical and physiologic function is an appropriate goal not only for acutely ill patients (to reverse the pathophysiologic aspects of the presenting disease) but also for long-term VAIs with limited physical function (such as patients with spinal cord injury).

Summary Recommendation: The care of VAIs should be directed by clearly defined objectives and goals. Delineation of the objective for care of a VAI is important in determining the appropriate site for care.

Criteria for Long-term Mechanical Ventilation Beyond the ICU Mechanical ventilation is required when spontaneous efforts are unable to sustain adequate alveolar ventilation.

The most obvious group of patients to identify as candidates for long-term ventilation are those with absent or severely impaired spontaneous breathing efforts. These patients include those with central hypoventilation secondary to inadequate central respiratory drive (ie, intracranial hemorrhage, cerebrovascular accidents, central Mechanical Ventilation Beyond the Intensive Care Unit

alveolar hypoventilation) or severe respiratory muscle failure (ie, high spinal cord injury). Patients in this group are unable to sustain spontaneous breathing effort and are dependent on mechanical ventilation for life support.

Some may be successfully treated with NIV, but patients who require continuous mechanical ventilation usually require more support personnel and respiratory equipment (such as backup ventilators and monitors) and may be at risk for catastrophic complications.

Patients with acute respiratory failure who fail repeated attempts at weaning from mechanical ventilation may also require long-term ventilation. These patients may have suffered a major insult to the respiratory system as a result of a severe medical illness or postoperative catastrophe, or developed an acute illness superimposed on a chronic disorder (ie, malnutrition, advanced age, cardiac disease, systemic infection, COPD) that further impairs an already compromised respiratory pump. Some of these patients may be able to breathe spontaneously for several hours, but longer periods often result in worsening respiratory failure and require reinstitution of mechanical ventilation.

Use of NIV in such patients may be associated with fewer adverse effects than invasive ventilation. In general, patients who can maintain spontaneous ventilation for significant periods of time ($4 h/d) are easier to monitor and require less support personnel and respiratory equipment (such as monitoring equipment and backup ventilators).

Another group of patients who may require long-term ventilation are those with chronic disorders that precipitate recurrent bouts of respiratory failure, with each episode necessitating ICU hospitalization and repeated treatments with mechanical ventilation. These disorders

include severe COPD, kyphoscoliosis, and severe or slowly progressive neuromuscular disorders. Early implementation of noninvasive modalities in these patients may improve gas exchange and help to avoid repeated episodes of respiratory failure requiring hospitalization, intubation, and acute ventilation. Early noninvasive ventilatory assistance may be inititated semielectively in these patients.

Optimal time for initiation of elective ventilatory assistance is largely dependent on the specific etiology for the respiratory failure, the severity of the physiologic abnormalities, and symptom severity.

Table 1 presents indications for both noninvasive and invasive long-term ventilation beyond the ICU. NIV is preferred whenever possible; chapter 3 discusses techniques and modalities for both noninvasive and invasive ventilation.

Determination of the need for ventilatory assistance and selection of the optimal treatment modality for longterm ventilation is predicated on an initial evaluation that may include a nocturnal polysomnogram. Even though patients may not demonstrate hypoventilation during the day and have normal PaCO2 while awake, they may develop severe nocturnal hypercapnia; and ventilatory support for these individuals may improve symptoms and lessen fatigue. In addition, patients with chronic daytime CO2 retention usually retain more at night and may have sleep-disordered breathing. If obstructive sleep apnea is found in combination with mild CO2 retention, a trial of nasal continuous positive airway pressure (CPAP) may be warranted before assisted ventilation is considered. Further, other reversible contributors to chronic respiratory

Table 1—Indications for Mechanical Ventilation Beyond the ICU Indications for NIV • Patient has chronic stable or slowly progressive respiratory failure: • Significant daytime CO2 retention ($50 mm Hg) with appropriately compensated pH or • Mild daytime or nocturnal CO2 retention (45 to 50 mm Hg) with symptoms attributable to hypoventilation (eg, morning headaches, restless sleep, nightmares, enuresis, daytime hypersomnolence, etc) • Significant nocturnal hypoventilation or oxygen desaturation • The following conditions have been met: • Patient has had optimal medical therapy for underlying respiratory disorders • Patient is able to protect airway and clear secretions adequately • Patient’s reversible contributing factors have been treated (eg, obstructive sleep apnea, hypothyroidism, congestive heart failure, severe electrolyte disturbance).

• The diagnosis is appropriate (Table 2) and may include the following: • Neuromuscular disorders • Chest wall deformity • Central hypoventilation syndrome or obesity hypoventilation • Obstructive sleep apnea, and a failure to improve with nasal CPAP • COPD, with severe hypercapnia or nocturnal desaturation (tentative indication)* Indications for invasive ventilation • Patient meets indications for NIV and has the following: • Uncontrollable airway secretions despite use of noninvasive expiratory aids; or • Impaired swallowing leading to chronic aspiration and repeated pneumonias • Patient has persistent symptomatic respiratory insufficiency and fails to tolerate or improve with NIV • Patient needs round-the-clock (.20 h) ventilatory support because of severely weakened or paralyzed respiratory muscles (eg, quadriplegia due to high spinal cord lesions or end-stage neuromuscular disease) and patient or provider prefers invasive ventilation *However, some conferees strongly prefer NIV, even when the patient has a need for continuous ventilatory support, as long as upper airway function is intact.

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failure, such as hypothyroidism, congestive heart failure, and severe electrolyte disturbance, should also be excluded.

The integrity of the patient’s upper airway should also be evaluated. Patients being considered for NIV should be able to clear secretions effectively in order to avoid pulmonary pathology and respiratory failure. For patients with neuromuscular disease, if swallowing is severely impaired, and assisted cough flows are reduced (,160 L/min), invasive ventilation and a tracheostomy should be considered.17,18 A variety of disorders (CNS, neuromuscular, skeletal, cardiovascular, or respiratory) may lead to respiratory failure and the need for ventilatory assistance. The underlying illness is an important consideration. Table 2 lists medical conditions that are appropriate for long-term mechanical ventilation beyond the ICU. Guidelines for use of NIV in neuromuscular diseases have recently been published.19 Note, however, that indications for long-term ventilatory assistance for patients with COPD are unclear. To our knowledge, only one long-term controlled study has re-

Table 2—Medical Conditions Appropriate for Longterm Mechanical Ventilation Beyond the ICU CNS disorders Arnold-Chiari malformation CNS trauma Cerebrovascular disorders Congenital and acquired central control of breathing disorders Myelomeningocele Spinal cord traumatic injuries Neuromuscular disorders ALS Congenital childhood hypotonias Guillain-Barre´ syndrome Infant botulism Muscular dystrophies Myasthenia gravis Phrenic nerve paralysis Polio and postpolio sequelae Spinal muscular atrophy Myotonic dystrophy Skeletal disorders Kyphoscoliosis Thoracic wall deformities Thoracoplasty Cardiovascular disorders Acquired heart diseases Congenital heart diseases Respiratory disorders Upper airway Pierre-Robin syndrome Tracheomalacia Vocal cord paralysis Lower respiratory tract BPD COPD Complications of acute lung injury Cystic fibrosis Complications of infectious pneumonias Pulmonary fibrotic diseases

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ported a favorable effect for intermittent noninvasive positive pressure ventilation (NPPV) in patients with stable COPD. These patients had severe CO2 retention and nocturnal oxygen desaturations. Uncontrolled longterm studies have also reported improvements in daytime gas exchange and respiratory muscle function after use of NIV in patients with severe COPD who have had greater average CO2 retention than patients in controlled studies.20-22 In addition, several anecdotal series have reported gas exchange improvements in patients with cystic fibrosis and severe CO2 retention who are awaiting lung transplant.23,24 These reports suggest that a trial of NIV may be warranted in COPD patients with severe CO2 retention, ($50 mm Hg), but further studies are needed. Patients with no or nominal CO2 retention appear unlikely to benefit from NIV.

Research Recommendation: Additional research should be conducted to determine the predictors of success and outcomes of noninvasive and invasive mechanical ventilation to improve the clarity of indications for this type of ventilatory assistance.

Recommendation: Patients with chronic hypercapnia (PaCO2 >50 mm Hg) during the day, particularly when secondary to neuromuscular disorders, are candidates for long-term ventilatory assistance. Patients who develop symptomatic nocturnal hypercapnia, even in the absence of daytime hypercapnia, are also candidates for long-term ventilatory assistance.

Sites for Care of VAIs Many types of facilities are potentially available for the care of VAIs, but the terminology used to designate such sites is not standardized. For this report, facilities for the care of VAIs are grouped into three broad categories: acute care, intermediate care, and long-term care (Fig 1). The sites provide high, intermediate, and lower intensity respiratory and general care as well as lower, intermediate, and higher levels of rehabilitation and education. Treatment goals can be applied to patients at all facilities, but treatment objectives are most often met at specific facilities. That is, treating acutely ill patients is most appropriate in acute care facilities but can also be done at home if patients are properly trained and equipped; weaning from mechanical ventilation may occur in acute or intermediate care facilities but is usually inappropriate in long-term care facilities; and enhancing quality of life may be most appropriate in long-term care facilities or at home.

Currently, pressures from managed care and utilization review are producing more rapid discharge from acute care hospitals. Sites for long-term care are increasing in number as newer and less costly approaches are developed to address the problems presented by patients with high medical care requirements due to a Mechanical Ventilation Beyond the Intensive Care Unit

Figure 1. Potential sites for care of VAI. Sites toward the bottom of the figure in general have fewer medical resources and lower costs but allow greater patient independence and a higher quality of life.

Modified from Make and Gilmartin.4

variety of medical conditions, including the need for mechanical ventilation. Nevertheless, options for longterm placement of VAIs are still limited. In several locations around the country, intermediate care units specializing in the management of long-term care for VAIs have recently been developed. Reimbursement for care in these sites, and thus their availability to VAIs, varies depending on individual contracts between these sites and third-party payers. As yet, to our knowledge,

no data are available to indicate whether these less costly facilities have decreased the total number of VAIs who remain in acute care hospitals or decreased the need for additional beds for long-term care. Data are also unavailable on the number of VAIs receiving long-term care who have been able to transfer out of ICUs into other facilities or to home. (The estimate for VAIs receiving home care ranges from 10,000 to 20,000.)

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Research Recommendation: Additional data are needed on outcomes of alternate care sites for VAIs and the ability of these sites to achieve treatment objectives and goals for VAIs. Furthermore, the impact of the newer acute and intermediate care sites and the need for additional beds for VAIs in various regions of the country should be assessed.

Figure 1 illustrates the wide variety of potential sites for the care of VAIs. As VAIs move from the ICU and the acute care hospital, their care generally becomes less expensive and more directed by the individual patient.

Thus, the overall quality of life may be expected to improve,4,25 although the resources available for the patient’s care may diminish.

Summary Recommendation: The physician and health-care team should be knowledgeable about the resources and sites available in their geographic area for the care of VAIs. Such information assists in making decisions about the appropriate site of care for the VAI.

Acute Care Facilities Management of acute illness and initial weaning attempts usually occur in an acute care facility. Patients in these facilities, ICUs, specialized respiratory care units, and general medical/surgical units require intensive nursing and respiratory care as well as physician observation and intervention.

Intensive Care Unit: Although the intensive care setting is the site where most ventilatory assistance, in particular invasive ventilation, is initiated, it is clearly not the site for long-term care. Patients in ICUs are very ill. They are generally dependent on health-care professionals and have little opportunity for an improved quality of life. As a VAI becomes stable, ICU staff turn their attention to more acutely ill patients, and the VAI frequently receives much less care and attention. Financial pressures from thirdparty payers will continue to make the ICU unacceptable for long-term care, but in many community hospitals, the ICU may be the only available alternative for care until plans for discharge to other outside-the-hospital facilities are made. This is particularly true for ventilator-assisted infants.

Specialized Respiratory Care Unit: These units, which have fewer resources and are generally designed for stable VAIs who still require close attention (albeit without invasive monitoring), are appropriate sites for weaning patients.8,11 Although significant cost reductions of 20 to 60% have been demonstrated when long-term ventilator care in the acute care hospital is provided in a noninvasive respiratory care or intermediate care unit instead of an ICU,8,11,26 these units are 296S

still costly and must be considered temporary facilities designed to prepare the individual for discharge to sites outside the hospital.

General Medical/Surgical Unit: Placing long-term VAIs on general patient floors is an alternative to special care areas in many hospitals. From the perspective of the VAI, and for his or her quality of life, this may be a beneficial alternative, but one that requires appropriate preparation and training of caregivers.

Intermediate Care Facilities Caring for long-term ventilator-dependent patients in these facilities, subacute care units, long-term care hospitals, and rehabilitation hospitals should be less costly than in acute care settings, but as yet, data are insufficient to determine cost outcomes with certainty.

Subacute Care Unit: These sites, which may be located in acute care hospitals, typically admit patients who are medically complex, require physiologic monitoring, IV therapy, or postoperative care. They are designed for the treatment of patients who are in stable enough condition to no longer need acute care but require treatment too complex for conventional skilled nursing facilities. Each day, subacute care units usually provide for each patient at least 3.8 h of registered nursing care and at least 2 additional hours of certified nursing assistant care.27 Long-term Care Hospital: These facilities provide care for long-term ventilator-assisted patients as well as intensive care sufficient for patients who still require significant levels of ventilatory support (that is, high levels of positive end-expiratory pressure [PEEP] or fraction of inspired oxygen [FIo2] for oxygenation). During an average stay (that must exceed 25 days according to HCFA guidelines), patients may be weaned or switched to noninvasive ventilatory support and then discharged home, a congregate living center, or a skilled nursing facility. Patients may also be provided with rehabilitation services prior to being discharged with continued ventilatory support. Because these facilities are exempt from Medicare DRG reimbursement, numbers of for-profit long-term care hospitals have been increasing throughout the country.

Rehabilitation Hospital: Ventilator-assisted patients require some form of rehabilitation before they reenter the community. Rehabilitation hospitals, which require patients to have specific rehabilitation goals and spend at least 3 h/d in rehabilitation activities, employ a multidisciplinary coordinated team approach and around-theclock rehabilitation nursing. These facilities have enabled patients to meet realistic treatment goals, have produced significant practical improvements in patient function, and, where possible, facilitate ventilator weaning. Many of these hospitals designate some beds for intermediate care with specific funding, usually from Medicare, but the number of patients who can qualify for these beds is limited.

Long-term Care Facilities These sites, skilled nursing facilities, congregate living centers, and homes, do not have the resources to treat Mechanical Ventilation Beyond the Intensive Care Unit

acutely ill patients and are generally not optimal for actively weaning patients from ventilatory assistance.

Skilled Nursing Facility: VAIs are being placed with increasing frequency in these facilities, which include nursing homes, extended care facilities, and convalescent centers. Placing patients requiring long-term mechanical NIV in such facilities, with ongoing medical and allied health support from the acute care hospital, is not only more cost-effective but also may enhance quality of life.

Care of VAIs in skilled nursing facilities is sometimes less costly than in the home, particularly for patients who require extensive professional nursing care.

Congregate Living Center: These facilities are generally large private residences, apartments, or homes with 6 to 10 patients, therapeutic services (respiratory, physical, and occupational) contracted for by the facility, and 24-h professional caregiver support. Residents usually participate in managing household finances and functions, and they often have access to a van for shopping and excursions. At present, few of these centers for VAIs are available in the United States, although they are more common in Europe.

Home: Ideally, the preferred location for long-term VAIs is in the home. Quality of life is enhanced, and integration into the community is maximized. However, although the patient should ideally be capable of directing his or her own care, the family usually provides most of the support and assumes the role of primary caregiver. Occasionally, sufficient attendant care can be provided (from personal or community resources) to permit the VAI to live at home independently.

The most significant reductions in the cost of VAI care may occur with home care (although, as already noted, when extensive nursing care is required, the home setting for VAI care may be more costly than the skilled nursing facility setting). In 1984, the AARC surveyed hospitals in 20 states, found 258 long-term ventilator-assisted patients who were sufficiently stable to be considered for discharge to home, and estimated that yearly hospital costs were $270,830 per patient, whereas home costs were $21,192.28 Other studies found similar significant cost reductions.10,29-31 For example, home ventilator costs ranged from $407 to $5,100 per month, whereas hospital costs ranged from $10,000 to $16,000 (although home care equipment costs may be higher than reported because ventilator equipment must often be rented rather than purchased to ensure maintenance). The services of professional medical personnel are the most expensive commodity in home VAI management. However, when the patient is in clinically stable condition and the family is well educated and independent, the patient’s needs for professional services are fewer and thus home care costs are significantly reduced. In addition, because there is no evidence that licensed nurses are needed for continuous long-term care needs in the home, less costly personal attendant caregivers should be used whenever possible.32 These attendants may be trained to aid in such tasks as suctioning, respiratory treatments, and management and monitoring of ventilator equipment, which may substantially reduce the involvement of

more expensive medical personnel. One study demonstrated that even when personal attendants were reimbursed for 24-h care in the home, costs were still below those in health-care facilities.31 Unfortunately, the lack of third-party payer reimbursement for these services and medical/legal issues surrounding them currently restrict their availability in many locations.

Summary Recommendation: Long-term VAIs should live in a site that maximizes the individual’s independence, enhances quality of life, and minimizes cost, ideally in the home.

Recommendation: Because of the documented reduction in costs of care of VAIs in the home compared with the acute care setting, thirdparty payers should routinely reimburse the cost of home care for appropriate candidates. Furthermore, in most cases, patients and family members are self-directed and can effectively employ nonprofessional caregivers. Legal and financial barriers posed by home-care agencies and third-party payers for reimbursement of such attendants should be removed.

Outcomes of Long-term Ventilation in Acute, Intermediate, and Long-term Facilities Although several studies have reported survival following long-term mechanical ventilation in acute care facilities, the definition of long-term (or chronic) is not standardized. (Most studies define chronic ventilation as .2 or 3 days; some define the term by periods as short as 1 day or as long as 30 days.) In all studies, mortality associated with long-term mechanical ventilation was found to be significant. For example, data on Medicare beneficiaries ventilated for any length of time documented a 51% mortality.7 For another example, studies examining survival in patients ventilated for $48 h reported a mortality range of 36 to 59%. However, because patient age as well as severity and type of underlying medical or surgical illness are extremely variable, comparing results across studies is difficult.

Whether age is an independent factor influencing mortality in patients receiving mechanical ventilation is unknown as yet and needs further study. However, severity of illness appears to be an important factor in determining outcome. One study, which reported a hospital mortality rate of 59% in patients who were ventilated for at least 7 days, evaluated the ventilator-dependent patients according to their APACHE II (acute physiology and chronic health evaluation) score.1 Patients who were ventilated for comparable lengths of time but were more severely ill (APACHE II score 21 to 25) had a significantly greater mortality rate (77%) compared with patients who were less severely ill (APACHE II score 11 to 15) and who had a mortality rate of only 10%. There was no increase in mortality with a longer duration of ventilator dependency.

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appeared to reflect the severity of the illness rather than the need for mechanical ventilation.

The underlying disease associated with respiratory failure also has an important effect on outcome. Patients with malignancy and respiratory failure who receive mechanical ventilation have a 90 to 100% mortality rate and an expected life span of only a few months. However, data from two HCFA chronic ventilator-dependent demonstration sites have suggested that the survival of some patients requiring invasive long-term ventilation may be better than previously reported. At the first of these sites, 61 patients with a mean age of 68613 years received ventilation for an average of 34 days in a chronic ventilatordependent unit.33 Prior to transfer to the chronic ventilator unit, they were ventilated an average 34624 days in the ICU. Forty were transferred from the surgical service; 46% had COPD as a major underlying cause for prolonged ventilation. Of the 61 patients, 95% were discharged alive, and 87% were successfully weaned from long-term ventilation. In addition, 70% were discharged home, either directly from the unit (57%) or to a rehabilitation facility (13%) and then home. An expanded study at this same site reported on the outcomes of 129 carefully selected patients admitted to the chronic ventilator unit and found that 88% of the 99 patients who had been discharged home no longer required mechanical ventilation.34 At the second HCFA demonstration site, the short- and long-term survival and functional status of 77 patients receiving long-term ventilation were studied.35 The patients, who were 61617 years of age, were ventilator dependent for at least 6 h/d for at least 21 days prior to admission and had failed at least two prior weaning attempts by a skilled ICU respiratory team. Postoperative causes of respiratory failure were found in 26%. Medical causes of respiratory failure in the remaining 74% were neuromuscular diseases (26%), advanced lung disease (29%), congestive heart failure (5%), and a variety of other disorders (40%). The patients had received ICU care for 33624 days, followed by 49644 days in the chronic ventilator unit. Duration of mechanical ventilation (68654 days) was greater than in the first HCFA demonstration site study. Of the 77 patients, 93% were discharged alive, 82% were alive at 6 months, and 61% were alive at 1 year.

Furthermore, 86% were discharged home, 55% directly from the chronic ventilator unit, and 31% following transfer to a rehabilitation facility. Of the patients discharged home, 79% were completely weaned from mechanical ventilation, 11% required continuous ventilation, and 10% received nocturnal ventilation. The patients discharged home were characterized by a significant increase in functional status at 6 and 12 months as well as by improvements in weaning parameters and nutritional status.

These HCFA demonstration site studies have shown that selected long-term ventilator-dependent patients who reach clinical stability appear to have a reasonable survival rate and can be successfully weaned from mechanical ventilation. Moreover, after appropriate respiratory and rehabilitative treatment, a significant number of these patients can be discharged home with the potential for further improvement in functional status. Furthermore, 298S

therapy to improve nutritional status and respiratory muscle strength (that is, respiratory muscle and whole body training) may be important factors in improving ventilatory muscle performance and weaning outcomes. It should be noted, however, that these outcomes may depend on disease diagnosis, and may not apply to patients with severe neuromuscular disease, who are not always candidates for weaning.

Although little information is as yet available on clinical outcomes in skilled nursing facilities or in congregate homes, two studies of patients receiving long-term ventilation in the home have shown improved survival and functional status in patients with restrictive or neuromuscular disorders (postpolio syndrome, muscular dystrophies, kyphoscoliosis) compared with patients with intrinsic obstructive lung disease (COPD, bronchiectasis). In the first study, the actuarial survival of COPD patients receiving home ventilation in France was .50% less than that of patients with restrictive disorders.36 In the second study, COPD patients discharged home receiving mechanical ventilation were less independent and more likely to require repeated hospitalizations than patients with neuromuscular or chest wall disorders.37 This study also found that survival of VAIs with COPD was markedly less than patients with neuromuscular diseases.37

Criteria for Discharge to Non-ICU Facilities New information suggests that the ICU environment is not needed for long-term ventilator care and may even interfere with optimization of functional potential. Patients requiring long-term ventilation may reach a state of relative clinical stability and not require ICU nursing or invasive monitoring. Furthermore, most, if not all, longterm ventilator-assisted patients require significant rehabilitation, and developing a multidisciplinary treatment plan focusing on rehabilitation is difficult to implement in a ICU. A non-ICU setting that avoids the costly overhead of invasive monitoring and intensive medical care and that provides for a multidisciplinary rehabilitative approach may not only reduce the cost of care but also improve the functional status and quality of life of the VAI. Decisions on the most appropriate non-ICU setting for long-term mechanical ventilation must be individualized, as discussed in the next section, but regardless of the site chosen, several essential criteria for patient stability must be met to ensure that discharge to an alternative site is safe, logistically possible, and cost saving. Clinical criteria for stability of a VAI transferred to a more intensely supervised site (such as a specialized respiratory care unit in an acute care facility) are less rigid than for patients discharged to an intermediate care facility (such as a rehabilitation hospital) or to a long-term facility (such as a congregate living center).

Patients should reach a level of clinical stability so that they no longer require an ICU level of monitoring, medical intervention, or care.2,38-41 Criteria for medical and respiratory stability that should be met prior to discharge of patients from an ICU to an intermediate care facility are listed in Table 3. In general, patients ready for Mechanical Ventilation Beyond the Intensive Care Unit

Table 3—Discharge Criteria for VAIs From ICUs to Intermediate Care Facilities (Where Weaning is Possible) Medical stability Nonrespiratory organ dysfunction stabilized • Sepsis treated and controlled • Hemodynamically stable and no need for invasive hemodynamic monitoring • No uncontrolled arrhythmias or heart failure • No uncontrolled hemorrhage • Renal function and acid-base balance stable or receiving long-term dialysis • No coma, or if comatose, prognosis for improvement Treatment plan for all medical conditions is in place, will not require frequent changes, and can be implemented at alternate care site Adequate nutrition program in place; preferably using enteral route Respiratory stability Safe and secure airway; either tracheostomy with a sufficient mature stoma to allow tube changes, or stabilized on regimen of NIV with minimal risk for aspiration Able to clear secretions, either spontaneously or with assistance No episodes of severe dyspnea; no sustained moderate or severe dyspnea Stable airway resistance and lung compliance with variations in Ppeak of no more than 65 cm H2O (except during coughing) Adequate oxygenation (SaO2 $90%) on stable FIo2 (#60%) and low PEEP requirements (#10 cm H2O) Oxygenation stable including during suctioning, repositioning Stable ventilator settings and no need for sophisticated ventilator modes (eg, inverse ratio ventilation, independent lung ventilation, high frequency ventilation)

discharge from an ICU have had stabilization of nonrespiratory organ dysfunction and established treatment plans that can be implemented at the alternate care site under consideration. The medical regimen should be simplified as much as possible, with oral substituted for IV medications to reduce the need for skilled nursing intervention. In addition, an adequate nutritional program should be instituted, using enteral rather than total parenteral nutrition (TPN) to reduce the expense and complexity of care. In addition, TPN poses a greater risk for volume overload, electrolyte abnormalities, and infection.

The enteral route, however, helps to avoid gastric mucosal atrophy, translocation of Gram-negative bacteria from the gut, and stress gastritis. If IV access is necessary for TPN or medication administration, however, a permanent indwelling catheter (such as a Hickman or Broviac [Bard Access Systems; Salt Lake City, Utah]) should be inserted.

Patients should also meet the criteria for respiratory stability listed in Table 3. They should have a secure airway or be stabilized on a regimen of NIV. They should not have episodic severe dyspnea or desaturations, and oxygenation needs should be met easily without requiring high supplementary oxygen concentrations or high levels of PEEP. Respiratory secretions should be manageable outside of the ICU environment, and variations in airway resistance should be minimal. In addition, the patient should not be undergoing frequent ventilator setting changes, other than for weaning, and should not require sophisticated ventilator modes.

The criteria listed in Table 4 supplement those in Table 3, and should be used for VAIs who are under consideration for transfer to lower-intensity long-term care facilities or home. These patients should meet the stability criteria listed in Table 3 for a sustained period of time (at least 1 to 2 weeks). Their needs for skilled nursing care should be less than patients meeting the criteria in Table

3, because availability of such care is more limited in the long-term facilities. Some alternative care sites, such as rehabilitation hospitals, have special criteria that require patients to be capable of undergoing at least 3 h of physical therapy daily.

For VAIs who are being considered for transfer home, additional psychological and social stability criteria should also be met, as listed in Table 4. This is to assure that the patient makes a successful psychological adaptation to home, and will have sufficient human and financial resources to sustain that success. Psychological factors are at least as important as medical factors in assuring the success of home mechanical ventilation, and the patient and family should have a psychological evaluation by a psychiatrist, psychologist, or medical social worker familiar with issues commonly encountered in long-term VAIs. This evaluation should identify psychopathology, health-care decision-making ability, and barriers to transfer home, including financial and environmental factors. Long-term mechanical ventilation is most likely to be successful when the patient is highly motivated, self-directed, and able to communicate with the direct caregivers. It is also advantageous to have a family that fully comprehends the situation, is capable and desirous of participating in the patient’s care, and has sufficient support from an experienced multidisciplinary team of health-care professionals.

Making Decisions on the Most Appropriate Site for Long-term Mechanical Ventilation Decisions on the most appropriate site for long-term mechanical ventilation must be individualized for each patient and depend not only on medical information but also on psychological, social, financial, and geographic considerations. As listed in Table 3, successful discharge CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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Table 4 —Discharge Criteria for VAIs From ICUs to Intermediate Care Facilities to Long-term Care Facilities (With the Goal of Optimizing Quality of Life) Medical stability Has met medical stability criteria in Table 3 for sustained period of time (1-2 wk) Needs for skilled nursing can be met at alternate care site For transfer to rehabilitation facility, must be capable of at least 3 h of rehabilitation per day Respiratory stability Meets criteria in Table 3, but in addition: • Has stable FIo2 #0.4 with PEEP #5 cm H2O (unless on higher PEEP for obstructive sleep apnea) • Ideally, is capable of some ventilator-free breathing, the more the better; if no spontaneous breathing capability, adequate monitoring is available at alternate site If discharge home is contemplated, patients should meet stability criteria for 3-4 wk and these additional criteria should be met; Psychological stability • Able and willing to supervise care provided by personal care attendants (or has family member who can assume this role) • Able and willing to participate in self-care, or has sufficient caregiver assistance to adequately meet medical, respiratory, and personal care needs • No major affective disorders that limit participation in home • Stable home and family setting, or availability of 24-h attendant care • Willing and able caregivers identified and trained prior to discharge to provide necessary care • Home environment prepared in advance to accommodate patient’s needs • Adequate financial resources and mechanisms for reimbursement identified prior to discharge Comprehensive discharge plan in place (see chapter 4)

to a long-term mechanical ventilation facility is more likely when the following apply: (1) the patient is highly motivated; (2) the patient’s medical problems are stable; (3) the patient is able to do some activities of daily living independently; (4) the patient is able to communicate with and direct caregivers (self-directed); (5) the patient and his or her family fully understand the options (pro and con); (6) the family is able and desirous of participating in care; (7) resources are available for equipment and caregiver assistance; and (8) an experienced multidisciplinary team of health-care professionals is available.

Although the etiology of the respiratory failure in itself is generally less important for patient selection for care outside the ICU than other such issues as the patient’s needs and clinical stability, the goals of care, and the resources available, several of the medical conditions leading to respiratory failure present unique features that may be difficult in some alternate sites.

For example, patients with acute lung injury may be difficult to manage beyond the acute setting because associated multiple organ system dysfunction may necessitate frequent changes in orders and diagnostic tests as well as appropriate medical monitoring, and the high inspired oxygen concentration (FIo2) typically required by these patients requires a high level of respiratory monitoring. For another example, patients with interstitial lung disease who have continued dyspnea despite mechanical ventilation are limited in their ability to increase activity levels, require a high level of care, and have limited rehabilitation potential. Furthermore, patients who have copious secretions or frequent episodes of acute bronchospasm require careful monitoring and frequent suctioning and thus need sites for care with sufficient personnel to assist in respiratory care.

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Summary Recommendation: Patients with respiratory disorders that require high levels of med ical monitoring and intervention and more intensive respiratory care resources may be inappropriate candidates for alternate sites of care with the exception of specialized ventilation units.

Three steps should be followed in making decisions for long-term care of VAIs (see discharge criteria listed in Tables 3 and 4).

1. Consider the following patient needs and resources: medical condition; psychological or psychosocial condition; individual objectives and goals; physical limitations; activities of daily living and need for assistance from others; respiratory care needs: suctioning, hours of ventilator use per day, hours of spontaneous ventilation per day, supplemental oxygen use, ventilator settings; and available resources: health-care benefits, personal assets, community resources.

All members of the health-care team should evaluate these factors as they relate to the individual requiring assisted ventilation. Should the current level of care be continued? Or is an alternate site now appropriate? The patient and patient’s family should be asked to provide input. The physician, as the individual responsible for ordering services and care, has a key role in this process and should determine the amount of medical care, monitoring, and intervention required by listing the needs and goals of the VAI. 2. Determine the resources available in alternate sites of care. Information should be collected Mechanical Ventilation Beyond the Intensive Care Unit

about potential sites of care available in the area.

The health-care team should be knowledgeable about sites in the local community for continued care of VAIs. Discharge planners, social workers, case managers, and admissions representatives from alternate sites may be of assistance. However, visits to the potential site, particularly if it is the patient’s home, may be necessary to determine firsthand the type and amount of resources available. Health-care team members, including nurses, respiratory care practitioners (RCPs), and physical and occupational therapists, may help in evaluating the care available in the alternate sites.

3. Match the patient’s needs to the alternate care site with the required resources. In choosing an alternate site of care, the patient’s needs and goals should be balanced with the available resources: Patient Needs Medical care

Available Resources

Physician availability and care, including pulmonary specialist Monitoring (medical, Equipment (respiratory, cardiac), personnel respiratory, cardiac) (nurses, RCPs, aides, personal care attendants, family) Respiratory care RCPs, nurses, aides, personal care attendants, family Rehabilitation Therapists (physical, occupational, respiratory), physician (rehabilitation specialist)

Patient Needs Activities of daily living Psychosocial

Available Resources Aides, personal care attendants, family Mental health professionals (psychiatrist, social worker, psychologist)

On one hand, if the needs of the VAI are greater than the available resources, the individual’s needs may not be met, goals may not be achieved, and the result will be a less-than-desirable outcome. On the other hand, if there are more resources than required to meet the needs and goals of the VAI, resources may be misallocated and higher-than-necessary financial costs may be the result.

Summary Recommendation: The site of care chosen for a VAI is primarily the responsibility of the patient’s physician together with the patient and family, in consultation with other members of the health-care team. The choice should be made based on the sites that are available in the community. The appropriate site of care is one in which all the patient’s needs (medical care, respiratory care, psychosocial support, rehabilitation) can be met by the available resources to achieve the desired objectives and goals.

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Chapter 3. Noninvasive and Invasive Mechanical Ventilation The efficacy of less invasive ventilatory methods, particularly NPPV, is now well documented, and the success of NIV has led to the introduction of newer interfaces and ventilators. NIV is frequently the initial form of support applied to patients with neuromuscular disorders, and it is often used with COPD during episodes of acute respiratory failure as well as for chronic respiratory failure.

Patients with stable or slowly progressive neuromuscular syndromes or chest wall deformities who have intact upper airway function are the best candidates for long-term NIV.42 Patients with central hypoventilation or sleep apnea syndrome who continue to hypoventilate despite an adequate trial of nasal CPAP, and those with obesity hypoventilation, may also respond favorably. (Patients with morbid obesity have been found more difficult to ventilate than thinner patients,43 perhaps because of the high airway pressures necessary to overcome the reduced chest wall compliance.)

Using noninvasive forms of ventilatory support in patients in stable condition with chronic respiratory failure may be expected to improve physiologic function and quality of life as well as decrease the frequency of episodes requiring acute care facilities. Using noninvasive ventilatory support in patients with acute respiratory failure may be expected to decrease the complications that are frequently associated with invasive ventilation and thus decrease the patient’s use of critical care resources. Although it is unclear whether NIV can meet all these expectations, when indicated and when feasible, NIV is preferred over invasive ventilation because of ease of administration, preservation of upper airway function, enhanced quality of life, and lower cost.

This chapter first discusses types and applications of noninvasive mechanical ventilation and then invasive PPV (tracheostomy) and its application. Table 1, “Indications for Mechanical Ventilation Beyond the ICU,” lists the indications for noninvasive and invasive mechanical ventilation in chronic respiratory failure. (See chapter 5 for a discussion of the equipment and resources needed for both noninvasive and invasive long-term ventilation beyond the ICU, and chapter 6 for descriptions of special considerations concerning infants and children.)

Noninvasive Mechanical Ventilation Noninvasive mechanical ventilation includes the use of NPPV, NPV, rocking bed and pneumobelt, diaphragm pacing, glossopharyngeal breathing (GPB), and noninvasive secretion clearing aids.

Noninvasive Positive Pressure Ventilation The noninvasive delivery of PPV requires a positive pressure ventilator connected to an interface (or mask) that directs air through the upper airway into the lungs.

Among the interfaces now available for NPPV are nasal masks, mouthpieces, and face masks (oronasal masks).

Nasal interfaces are the most popular for nocturnal 302S

ventilation. They are preferred by most patients because they are comfortable and permit better speech than lipseal or oronasal interfaces.

Mouthpiece interfaces have been successfully used at some centers for several decades to deliver NPPV for up to 24 h/d.44-46 Mouthpiece ventilation is also especially useful for daytime ventilatory assistance. The mouthpiece can be placed near the mouth using a clamp support, with ventilation supplied by a wheelchair-mounted portable ventilator. For nocturnal use, the mouthpiece is held in place by a strapped lipseal or a strapless bite-block.47 Oronasal interfaces may be less acceptable to some patients for long-term use because they cover both the nose and mouth, but they may be preferred for patients who cannot tolerate nasal or mouthpiece interfaces or who have excessive air leaking through the mouth or nose.

Summary Recommendation: Nasal or oronasal interfaces can be useful in critical care settings to treat acute ventilatory failure. For long-term nocturnal ventilation, nasal interfaces are preferred by most patients, but oronasal and mouthpiece interfaces are suitable alternatives, particularly in patients who have excessive leakage through the mouth when using nasal interfaces.

Mouthpiece interfaces are preferred for longterm daytime NPPV. Application of NPPV: Initially, NPPV is most often used nocturnally. Periods of daytime ventilator use may be added as required by the patient’s needs. The initial trial can be carried out in the outpatient setting with titration of ventilation to achieve the desired level of PaCO2, and with patient and family education to ensure independent and safe use. However, if the patient has subacute or acute ventilatory insufficiency, or is thought to require close monitoring during initiation of NPPV, initial hospitalization may be appropriate. In all cases, efficacy and safety issues must be addressed.

For routine initial application of and education for NPPV, the following apply.

1. A relaxed daytime setting is preferred. Demonstrate and thoroughly explain each piece of equipment to the patient before the trial. Try various sizes and types of interfaces, although most often patients select a simple commercially available nasal interface.

2. The assist/control mode is most often used. Adjust the machine rate (used as a backup rate) to approximate the spontaneous breathing rate. Studies to guide rate selection are lacking, but a backup rate near the spontaneous breathing rate is recommended, with subsequent adjustments to optimize comfort. Selecting a rate slightly above the spontaneous breathing rate may suppress spontaneous breathing at night and may achieve better rest of respiratory muscles. Selecting a slightly lower rate will encourage patient triggering and may facilitate synchrony with the ventilator. In ventilators with an Mechanical Ventilation Beyond the Intensive Care Unit

adjustable trigger setting, adjust sensitivity to allow easy triggering through the interface.

3. Adjust the initial inspiratory pressure or tidal volume setting on the ventilator to a low level, and connect the ventilator and tubing to the mask. Once the patient is comfortable breathing with the ventilator, adjust the pressure or volume setting upward until the limit of tolerance for pressure is reached (usually 12 to 24 cm H2O with nasal ventilation, although higher pressures may be needed in special circumstances such as in obese and kyphoscoliotic individuals).

4. Continue ventilation for an additional hour or two while monitoring oximetry and end-tidal PcO2 or an arterial blood gas level may be obtained. An initial decline in PaCO2 of at least 5 to 10 mm Hg is desirable but not essential if the patient cannot tolerate higher volumes. With volume ventilators, using large tidal volumes to compensate for mask and mouth leaking is often necessary.48 After the initial trial, patients with acute respiratory insufficiency are encouraged to use the NPPV as much as tolerated until their condition improves. Patients in more stable condition are encouraged to use the ventilator overnight for as long as tolerated. Some patients adapt quite readily; others require several months. Still others fail to tolerate NPPV, usually because of mask discomfort.49,50 Rates of successful adaptation for patients with chronic ventilatory failure are very high for patients with neuromuscular disease or chest wall deformities and lower for patients with COPD. Interface custom fitting may improve tolerance, but patients who fail to respond to a trial of NPPV may warrant a trial with alternative noninvasive methods.

Follow-up consists of monitoring symptoms and daytime arterial blood gas levels or oximetry and end-tidal PaCO2. As periods of nocturnal use increase, daytime PaCO2 during spontaneous breathing usually falls gradually over several weeks. With adequate daytime use, complete normalization of PaCO2 is possible, but may be unnecessary because a daytime PaCO2 in the upper 40s to low 50s (mm Hg) is usually associated with resolution of symptoms (morning headache, daytime hypersomnolence) and signs of cor pulmonale. However, if PaCO2 fails to drop or climbs higher after previously successful NPPV, efficacy should be reassessed through nocturnal monitoring and daytime use should be instituted. If excessive air leaking through the mouth is found, interface adjustments, use of chin straps, or switching to an oronasal face mask may help. For patients using oral interfaces having air leaking through the nose, cotton nasal pledgets can be used. Elevated PaCO2 values may respond to increasing minute volume or extending periods of ventilator use in these patients if air leaking is not excessive. Frequent reassessment is indicated, since prolonged compliance with therapy may not always be achieved. For management of acute deteriorations after prior stabilization, hospitalization may be necessary. However, a recent study has demonstrated successful prevention of acute respiratory failure in the home for patients with neuromuscular

disease who had been trained on home use of continuous ventilation and assisted coughing.51

Recommendation: For patients receiving NIV, efficacy of ventilation should be assessed both at initial application and at follow-up, including measures of daytime gas exchange and nocturnal monitoring.

Negative Pressure Ventilation Negative pressure ventilators intermittently apply subatmospheric pressure to the thoracic and abdominal surfaces, thus increasing transpulmonary pressure and assisting air entry into the lungs. Three different types of body enclosures— body tanks, chest shells (cuirasses), and body wraps (pulmowraps or pneumosuits)—are available.52,53 Selection generally depends on patient tolerance and device performance. Older negative pressure generators all provided controlled ventilation only, severely limiting their use in patients with obstructive lung disease, but newer units provide assist/control ventilation.

The prototype body tank ventilator is the iron lung, which was developed for commercial use during the late 1920s.54,55 The tank ventilator today is the most efficient of the negative pressure ventilators for augmenting tidal volume because it exposes the entire thorax and abdomen to negative pressure. However, because body tanks weigh approximately 136 kg and are 3 m long, they are not portable. Even the smaller portable fiberglass tank ventilators are 2 m long and weigh 50 kg. In addition, these portable tanks require separate negative pressure generators with a greater capacity than those required for other negative pressure enclosures, such as the shell or wrap ventilators. These negative pressure generators weigh 10 to 20 kg and thus are less portable than some of the positive pressure systems. A newer negative pressure generator offers microprocessor controls and can be patient triggered (although the efficacy of the triggering mechanism has not yet been evaluated [to our knowledge]). Furthermore, all tank ventilators restrict access to the patient for nursing care and are poorly tolerated by claustrophobic patients.

Chest cuirass ventilation involves a rigid dome that fits over the chest and abdomen and is connected to a negative pressure generator. The chest shell is the easiest of the negative pressure ventilators to apply, after the initial fitting, but it is the least efficient and may not adequately ventilate severely compromised patients.56 Other limitations include discomfort and skin abrasions at contact points and difficulty fitting the shell to patients with chest wall deformities. Furthermore, in patients with severe chest wall deformities, even custom-fit shells are relatively ineffective.

Negative pressure body wrap ventilation incorporates a nylon or plastic jacket that surrounds the chest and abdomen and is suspended over a rigid chest piece.

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jacket by a negative pressure generator, which leads to chest inflation.55 Advantages of the wrap are that it is more portable than the tank ventilator and allows the patient to lie in a regular bed. However, because it applies negative pressure to a smaller surface area than the tank, the wrap is less efficient, and complete elimination of air leaks may be difficult. In addition, applying the wrap to patients with limited limb movement is time consuming and difficult.

Furthermore, use of the wrap is commonly associated with musculoskeletal pain, particularly in the back, because it restricts positioning.

Summary Recommendation: NPV can effectively augment ventilation and can be used for longterm support. However, NPV is currently reserved for patients in whom NPPV has failed and is an alternate second-line form of part-time support for patients using other means of assisted ventilation. Selection of a particular negative pressure ventilatory device is based on desired effectiveness, convenience, and portability. Application may be difficult in patients with severe chest wall deformities.

Application of NPV: Initiation of NPV for chronic respiratory failure is conducted in a manner similar to the initiation of PPV. In general, the more efficient the ventilator, the less negative pressure required. In an iron lung/body tank, for example, typical negative pressures are between 212 and 225 cm H2O, but pressures of 235 to 260 cm H2O are often necessary to achieve similar tidal volumes using a chest shell/cuirass. If sufficient negative pressure cannot be achieved, excessive air leaks should be identified and corrected.

Careful follow-up is mandatory, as with NPPV. Nocturnal monitoring is particularly important in patients using negative pressure ventilators because these devices may induce or exacerbate obstructive sleep apneas.57 Recommendation: Negative pressure ventilators may induce or worsen obstructive sleep apnea.

Thus their use is contraindicated in patients with moderate to severe obstructive sleep apnea unless combined with nasal CPAP. To assure efficacy, follow-up nocturnal monitoring, including at least oximetry, is mandatory.

Rocking Bed and Pneumobelt The rocking bed58,59 and intermittent abdominal pressure respirator (pneumobelt)60 assist ventilation by displacing the abdominal viscera and thereby enhancing diaphragmatic motion. The combination of NPPV or NPV with the rocking bed or pneumobelt is a useful alternative to tracheostomy in some patients requiring ventilatory support.48,61,62 Rocking beds can also provide dermal pressure relief for paralyzed or weak patients during sleep, 304S

reducing the need for frequent turning by a personal attendant.63 Because the efficacy of both devices depends on compliance of the abdomen and chest wall,59 ventilation is usually not adequate for obese patients and for those with chest wall deformities.

The rocking bed consists of a mattress that rocks the head and feet up and down through an arc of approximately 40° on an axis placed at approximately hip level. It is bulky, heavy (approximately 200 kg), and expensive to transport. Nevertheless, it is simple to use, and most patients find it comfortable. It rarely causes motion sickness, presumably because it rocks in only one plane. Its main action is to slide the diaphragm up and down, which appears to make it particularly effective in assisting nocturnal ventilation in patients with bilateral diaphragmatic paralysis.64 However, because the rocking bed’s efficacy is quite limited, it should be used with caution in patients who have limited pulmonary reserve and should be avoided for treatment of acute episodes of deterioration.

The rocking bed is not effective for infant ventilation.

The pneumobelt, which is an inflatable rubber bladder held firmly against the abdomen by a nylon corset, is similar to the rocking bed in that it slides the diaphragm up and down. Because gravity returns the diaphragm to its original position, the pneumobelt must be used in at least a semiupright position and is ineffective when the patient’s head is lower than 30°.60,61 Some patients who can sleep sitting upright use the pneumobelt for around-the-clock ventilatory assistance65 because it spares the nose, mouth, and hands and does not interfere with speech or eating.

However, it works best as a daytime adjunct to other forms of NIV. The most frequent complication is skin abrasion after prolonged use. Like the rocking bed, the pneumobelt appears to be particularly effective in patients with bilateral diaphragmatic paralysis, including those with high spinal cord lesions.66 Also like the rocking bed, the pneumobelt is not suitable for use during acute respiratory failure.

Recommendation: The rocking bed and pneumobelt have limited utility, but they are particularly effective in patients with severe bilateral diaphragmatic weakness or paralysis. Both devices may be effective in those patients with respiratory failure due to neuromuscular disease, but neither device is suitable for the support of patients with acute respiratory failure.

Application of Rocking Bed and Pneumobelt: To use the rocking bed, place the patient lying face upward and, to optimize comfort and prevent sliding, raise the head and knees slightly by means of hand cranks attached to the bed. Select a rocking frequency to optimize minute ventilation, with tidal volume monitored using a handheld spirometer or an impedance plethysmograph. The maximum rocking rate is 22/min, but rates between 12 and 16/min are usually selected because studies have shown that assisted minute volume may fall at rocking rates above Mechanical Ventilation Beyond the Intensive Care Unit

16.67 Initial coaching to encourage the patient to relax and breathe synchronously with the bed is necessary, but most patients adapt quite readily.

To use a pneumobelt, select an appropriate size (small, medium, or large). Position the curved edge of the pneumobelt over the pubis and the upper edge over the xiphoid, just overlapping the lower borders of the rib cage.

Then tighten the corset straps around the abdomen firmly without constricting spontaneous breathing. Positive pressure ventilators that are capable of generating bladder pressures of at least 50 cm H2O at an inspiratory/expiratory (I/E) ratio of 1:2 can be used to power the pneumobelt. Because a patient-triggering mechanism is not required, relatively simple and inexpensive devices are most often selected. Select a respiratory rate (12 to 22/min) to approximate the patient’s spontaneous breathing rate and to optimize comfort. Gradually increase bladder inflation pressure (usually to 30 to 50 cm H2O) by raising ventilator tidal volume until the patient’s limit of tolerance is reached or end-tidal Pco2 or PaCO2 is lowered into the desired range. Because the pneumobelt must be used in at least a semiupright position, it is most often applied during the daytime to supplement nocturnal modes of NIV. For the occasional patient who uses the pneumobelt nocturnally, a hospital bed or reclining chair is helpful to support the patient in an upright position.

Follow-up for rocking bed and pneumobelt use is the same as for other noninvasive ventilators. Nocturnal monitoring is necessary because obstructive apnea may occur and oxygen supplementation is indicated. If daytime spontaneous PaCO2 fails to fall to at most to the low 50s mm Hg, increasing the rate or rocking arc for the bed or inflation pressure for the belt, or extending the duration of use, may be helpful. During acute decompensations, switch patients to more effective forms of NIV, such as PPV or tank ventilation, or perform temporary endotracheal intubation. After stabilization, rocking bed or pneumobelt use can be resumed.

Recommendation: Patients who are excessively thin, who are obese, or who have severe chest wall deformity are poor candidates for pneumobelts.

Recommendation: Pneumobelts are best used as daytime adjuncts to other forms of assisted ventilation because they must be used in at least a 30° upright position.

Diaphragm Pacing In diaphragm pacing, the phrenic nerve is electrically stimulated to contract the diaphragm and assist inhalation.

This system, used mainly in patients with respiratory failure due to high spinal cord lesions or central hypoventilation, uses an extracorporeal radio frequency transmitter and antenna together with surgically implanted receivers and phrenic electrodes, usually supraclavicular.68 Prior to electrode placement, transcutaneous phrenic nerve con-

duction studies must be done to assure adequate phrenic nerve and diaphragm function. Although diaphragm pacing has been used to support ventilation for periods exceeding 15 years, leaks in the receiver as well as electrode wire fractures have limited the operating life of the pacing system to an average of about 6 years. Thus, periodic surgical procedures to replace damaged parts are required. Recent technical improvements may extend the service life.

Indications for diaphragm pacers are currently limited.

Because of problems that include frequent induction of obstructive apnea and severe oxygen desaturation during sleep69 and lack of system alarms despite the possibility of unpredictable failure, 90% of pacer users retain their tracheostomies.70 The only current advantages of pacers over tracheostomy alone are that the transmitter and antenna are more portable than most ventilators and the tracheostomy tube can be plugged during pacer use for more normal upper airway function. However, because most patients can learn to talk and eat during use of tracheostomy PPV, the latter advantage may be relatively minor. In addition, several recent reports have described the treatment of patients with high cord lesions using strictly noninvasive methods,66,70 and further, initial costs of diaphragm pacers may exceed $300,000.71

Recommendation: Diaphragm pacing is presently best reserved for children with high cord lesions or central hypoventilation who are unable to cooperate with noninvasive methods. It may also be useful occasionally for adults with high cord lesions who value the mobility and improved upper airway function that diaphragm pacing provides and who do not have sufficient neck rotation or lip strength to use a mouthpiece.

Glossopharyngeal Breathing Glossopharyngeal or “frog” breathing is a totally noninvasive technique for assisting alveolar ventilation in patients with weakened respiratory muscles. The technique, first observed in a patient with respiratory failure due to paralytic poliomyelitis who had learned it spontaneously,72 was subsequently taught to other patients with polio and more recently to patients with spinal cord injuries and other neuromuscular disorders.73 In GPB, gulping motions of the tongue repeatedly force air into the lungs. With each gulp, which takes approximately 0.5 s, the tongue seals against the palate and injects a 50- to 150-mL bolus of air into the lungs. The glottis is closed after each injection to retain inhaled air. Gulps are repeated 5 to 10 times to achieve a tidal volume of roughly 600 mL, after which the glottis is opened and air is passively exhaled. Cycles are repeated 10 to 12 times per minute, such that a normal minute volume can be achieved. The technique can supplant the action of the usual respiratory muscles when these are paralyzed, or CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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assist each breath by augmenting tidal volume when respiratory muscles are weakened. Gulping can be continued until volumes exceed 2 to 2.5 L, thereby assisting cough and achieving expiratory flows sufficient to mobilize secretions.

GPB is most often used to provide or extend free time from mechanical ventilators in patients with spinal cord injury, postpolio syndrome, or (occasionally) muscular dystrophy who have adequate bulbar function but are incapable of breathing autonomously using respiratory muscles.73 Patients with airway obstruction, reduced chest wall compliance, or severely weakened upper airway muscles rarely benefit from GPB.

Recommendation: Greater use of GPB is encouraged in appropriate patients because it may increase ventilator-free time, improve cough, and increase feelings of independence.

Noninvasive Aids for Secretion Clearance Patients with impaired cough due to respiratory muscle weakness or severe pulmonary restriction have problems clearing secretions and are particularly prone to secretionrelated complications during periods of bronchial hypersecretion that occur with respiratory tract infections or after general anesthesia. Effective coughing or secretion clearance in these patients requires expiratory muscle and airway function capable of producing peak cough expiratory flows that exceed at least 3 L/s on glottic opening.74 Noninvasive techniques for secretion clearance include manually assisted coughing, mechanical insufflation-exsufflation, and mechanical oscillation.

Manually Assisted Coughing: This technique accelerates expiratory flow by application of quick thrusts to the subxiphoid region (similar to those used in a Heimlich maneuver) that are timed to coincide with the patient’s expiratory effort. Successful use of manually assisted coughing requires a cooperative patient, good coordination between the patient and caregiver, adequate physical effort, and frequent application. This technique should be performed preferably when the patient’s stomach is empty.17 Its use should be preceded by an insufflation in patients with vital capacities of #1,500 mL. In patients with impaired cough due to neuromuscular disease, it is very useful, but in the presence of significant scoliosis, it is often ineffective. In the presence of an osteoporotic rib cage, it must be performed carefully.

Mechanical Insufflation-Exsufflation: This noninvasive technique for secretion clearance consists of using a mechanical device to deliver 30 to 40 cm H2O inflation pressure via a mouthpiece, mask, or endotracheal tube and then to abruptly decrease pressure to 230 to 250 cm H2O.17,18 This 90-cm drop in pressure occurs over 0.2 s and raises peak expiratory flow to .6 L/s. Insufflation and exsufflation pressures are independently adjusted for comfort and efficacy. A typical treatment consists of five cycles of insufflation-exsufflation followed by a period of normal 306S

breathing for 10 to 20 s. Five or more treatments are given at one time, and the treatments are repeated until no further secretions are produced and oxygen saturation returns to pretreatment baseline. If necessary during exacerbations, treatments can be repeated as often as every 10 min.

Several portable mechanical insufflation-exsufflation devices were manufactured during the 1950s and 1960s, but production ceased and the devices fell out of use. In early 1993, however, a mechanical insufflator-exsufflator was approved by the Food and Drug Administration and is now commercially available.

Mechanical insufflation-exsufflation is usually reserved for use when manually assisted coughing is inadequate. It is contraindicated in patients with bullous emphysema or other disorders associated with a predisposition to barotrauma.

Mechanical Oscillation: Mechanical high-frequency oscillation consists of rapid small amplitude pressure swings above and below atmospheric pressure that are applied by oscillator devices externally to the chest wall or abdomen or directly to the airway. These applications were found to have beneficial effects on mucociliary transport.75 Oscillators may not provide any additional benefits for patients with neuromuscular disease who successfully use manually assisted coughing or mechanical insufflation-exsufflation, but they may be useful for patients with airflow limitation or chest wall disease.

Some commercially available oscillators have adjustable I/E ratios that permit asymmetric inspiratory and expiratory pressure changes (for example, 13 to 26 cm H2O).

Because these adjustments favor higher exsufflation flow velocities to optimize secretion mobilization, such devices may be preferable to those with a fixed I/E ratio. Another oscillator device is the hand-held internal airway percussor that delivers 30 mL sine wave oscillations through a mouthpiece at 20 Hz. One evaluation of this device found that overall tracheobronchial clearance of an inhaled radioaerosol was significantly improved by a combination of physiotherapy and high-frequency oscillation, although not by either modality alone.75 A similar oscillator device, the intrapulmonary percussive ventilator, may also be useful in the treatment of postoperative atelectasis and secretion mobilization in COPD patients. However, further studies comparing high-frequency oscillation to manually assisted coughing and mechanical insufflation-exsufflation are needed to determine whether the theoretical benefits of the high-frequency devices will translate into improved patient outcomes.

Recommendation: Manually assisted coughing is recommended for patients with weakened expiratory muscles who have excessive secretions.

Techniques such as mechanical insufflation-exsufflation and mechanical oscillation may be beneficial in certain situations, but further study is required.

Mechanical Ventilation Beyond the Intensive Care Unit

Invasive Positive Pressure Ventilation As already emphasized, NIV is preferred over invasive ventilation, especially for patients with neuromuscular or skeletal disorders who require noncontinuous ventilation because of ease of administration, preservation of upper airway function, enhanced quality of life, and lower cost.

Even patients with severely weakened or paralyzed respiratory muscles whose time off the ventilator is negligible may be treated with NIV.70 However, invasive ventilation should be considered in patients who have persistent symptomatic hypoventilation despite repeated trials of NIV. Further, patients with more rapidly progressive neuromuscular syndromes that impair upper airway function, such as the Guillain-Barre´ syndrome, are usually treated with invasive ventilation when ventilatory support is indicated. For all patients, the decision to switch from noninvasive to invasive ventilation should be individualized and take patient and practitioner preferences as well as environmental resources into account.

Tracheostomy Tubes For short-term intubations, translaryngeal tubes are appropriate, but they are less stable than tracheostomy tubes, traumatize the larynx, and interfere with speech and swallowing.76 When patients cannot be weaned and when noninvasive methods cannot be used, the translaryngeal tube should be replaced with a tracheostomy tube, of which many types are available, as soon as the need for long-term ventilatory support (for .3 weeks) becomes apparent.77 Selection of tracheostomy tubes depends on the integrity of the patient’s upper airway and whether the need for ventilatory assistance is continuous or intermittent. Tubes may be cuffed or uncuffed, fenestrated or nonfenestrated, metal or plastic. The goal of both selection and management of tracheostomy tubes should be to assure optimal speech and swallowing and to minimize complications.

Tube Selection If the patient has problems with chronic aspiration and is unable to speak (as after a brainstem stroke), use of a cuffed, nonfenestrated tracheostomy tube is recommended.

If the patient aspirates but is capable of speech, a cuffed tracheostomy tube with a separate channel that directs compressed air upward and through the larynx can be tried. Because the cuff of the tracheostomy tube does not completely prevent aspiration, and the port directing air upward may not be optimally positioned for all patients, caution is required.

If the patient has no swallowing problems and is capable of speech, every effort should be made to assure optimal upper airway function and speech. This can be accomplished by deflating the cuff or using a cuffless tube to allow a leak sufficient to permit speech, and compensating for the resultant leak by increasing the tidal volume delivered by the ventilator. Exercise extreme caution in this manipulation because the leak can be positional. For at least several days after the leak is initiated, clinical

parameters, peak pressures, oximetry, and arterial blood gas levels should be closely monitored to assure clinical and physiologic stability. Alternatively, a one-way flap valve can be attached to the tracheostomy inlet that allows inhalation through the tracheostomy tube and exhalation through the upper airway.78 When used in a ventilator circuit, this valve prevents exhaled air from exiting through the ventilator tubing, and forces it upward around the partially deflated cuff and through the larynx. Use of the one-way valve may allow more functional speech than use of a cuff leak alone. To prevent hyperinflation with increases in PEEP as well as barotrauma, care must be taken to assure that the patient can exhale around the tube through the upper airway.

If the patient can breathe spontaneously for extended periods ($1 h), consider a fenestrated tracheostomy tube.

The fenestrated tube can then be plugged and the cuff deflated for periods of unassisted breathing. The fenestration may reduce airway resistance due to the tracheostomy tube and facilitate breathing through the upper airway.

During plugging of the tracheostomy tube, encourage speech and eating by mouth. If aspiration is a problem, swallowing should be evaluated further.

Tube Management For cuff inflation, use of the minimal occlusion technique or minimal leak technique is recommended; some investigators have suggested that cuff pressure should be closely monitored.79 Cuff pressure should be kept below 20 cm H2O, and optimal cuff inflation volume should be ,6 to 8 mL. If cuff volume must exceed 10 mL for minimal occlusion, consider changing the tracheostomy tube, with direct inspection of the trachea for the presence of tracheomalacia. Avoid using tubes of increasing diameter because they may promote further tracheomalacia. If cuff volumes become too high, consider foam cuff tubes because they maintain minimal cuff pressure.

Recommendation: Tracheostomy tubes should be selected and managed to assure optimal speech and swallowing as well as to minimize complications.

Application of Invasive Ventilation: For patients who require long-term invasive ventilation after a bout of an acute respiratory failure and fail to respond to repeated weaning attempts, consider the possibility of weaning to NIV. If the patient has difficulty with aspiration, upper airway obstruction, or severe debilitation, however, this may not be feasible. Weaning to just nocturnal ventilation should also be considered because this may allow plugging of the tracheostomy during the daytime. For example, in one study, four patients with severe kyphoscoliosis and chronic respiratory failure who were refractory to treatment with supplemental oxygen, tracheostomy, inhaled bronchodilators, and diuretics were treated with 12 h of nocturnal PPV via tracheostomy.80 All four patients demCHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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onstrated reductions in daytime PaCO2 and the level of dyspnea, with improved sleep and reversal of cor pulmonale.

When patients remain dependent on long-term invasive mechanical ventilation, maintain their comfort and stability: Use standard tidal volumes (8 to 12 mL/kg) or adequate inspiratory pressures to provide these volumes. Also, use the assist/control mode with a backup rate set to allow triggering (or to maintain a desired PaCO2 if the patient is incapable of triggering the ventilator).

If possible, maintain adequate oxygenation by providing adequate ventilation or, when necessary, by using appropriate oxygen supplementation. The goal of therapy is to maintain a PaO2 of at least 65 to 70 mm Hg and an arterial oxygen saturation (SaO2) of at least 91 to 93%. These levels are generally adequate to maintain a margin of safety, and higher levels of oxygenation provide little additional benefit.

Avoid the synchronized intermittent mandatory ventilation (SIMV) mode on portable ventilators because the demand valve may increase the work of breathing and contribute to patient discomfort.81 (See also the discussion of ventilator modes in chapter 5.)

tinum, pneumothorax), hypotension, atelectasis, gastric distention, and impaired hepatic and renal function.83 Still other complications are related to the need for an artificial airway and prolonged immobility, such as impaired communication skills and swallowing, whole body deconditioning, and psychosocial issues.

The possibility of accidental ventilator disconnection requires an adequate alarm system. The possibility of ventilator malfunctioning in the home or at other longterm care sites, which could have devastating consequences for invasive ventilation patients, requires careful attention to preventive maintenance and quality control protocols for ventilator equipment. Data on the prevalence and severity of ventilator complications outside of the ICU are lacking. However, data on types and incidence of ventilator malfunction in critically ill patients in the ICU have revealed inadequate humidification (13%), overheating of inspired air (2%), malfunction of high or low pressure alarms (4%), and failure to deliver the set volume (2%).84 Because eradication of all equipment-related complications is highly unlikely despite advances in ventilator design and durability, patients who require $20 h of mechanical ventilation each day for life support require a backup ventilator and alternate power source.2

Complications of long-term invasive ventilation include the following: tracheomalacia—monitor cuff inflation volumes closely;76 granuloma formation interfering with suctioning or ventilation; soft-tissue infections around the tracheostomy stoma; and dissection of the tract into tissue planes around the trachea. Monitor the patient’s tracheal stoma site, respiratory tract secretions, respiratory symptoms, and clinical status closely; bronchitis and pneumonia should be treated vigorously because tracheostomies allow direct access to the lower airways.82 Other complications include those that are common and well reported in all patients receiving mechanical ventilation: purulent tracheobronchitis, alveolar hypoventilation or hyperventilation, barotrauma (pneumomedias-

Summary Recommendation: NIV is preferred over invasive ventilation because of ease of administration, preservation of upper air function, enhanced quality of life, and lower cost.

Summary Recommendation: A second mechanical ventilator and alternate power source should be available for emergency use in the home and at all care sites for patients who cannot sustain independent, spontaneous ventilation for >4 h.

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Mechanical Ventilation Beyond the Intensive Care Unit

Chapter 4. Planning for Discharge, Care, and Rehabilitation Once a VAI meets the criteria outlined in Table 3 (for discharge to non-ICU acute and intermediate care facilities) and Table 4 (for discharge to long-term care facilities or home with the goal of improving the quality of life during long-term care), discharge planning should be initiated to make decisions regarding the optimal site for transfer and for the plan of care.2,85,86 This chapter focuses on discharge planning and rehabilitation, a major goal for discharge of VAIs. (See also the section on deciding on the most appropriate site for long-term ventilation in chapter 2.)

Discharge Planning The discharge planning process should ensure not only a smooth transition but also patient safety and optimal outcome in the new site. Although discharge planning usually implies that the patient will be discharged to the home, planning is also required when the patient is transferred to a non-ICU acute care facility, an intermediate care facility, or a long-term facility other than home.

Patient assessment should result in clearly defined patient goals, a list of patient needs including personnel requirements, specific equipment needs, and the availability of health insurance coverage for care at alternative sites.

Guidelines for the discharge planning process have been written by the American Medical Association,87 the AARC,88 and a group of health-care professionals at a university medical center.89

Discharge Planning Team Successful transition of a VAI from the ICU to an intermediate or long-term care site outside the traditional hospital setting, particularly to the home, requires the collaborative efforts of a discharge team.4,90 The team identifies all patient care issues that must be resolved prior to discharge and develops a discharge plan to facilitate transfer. The team, which includes the patient and his or her family, should be comprised of key hospital and community-based personnel, many of whom will play an ongoing role in the patient’s care once he or she is discharged.

In a recent survey of hospitals, only 60% of responding facilities had active discharge planning teams.91 In the other facilities, discharge of VAIs was managed by a social worker, physician, nurse, or RCP. Although there is as yet no standard method for coordinating the discharge of VAIs, a team approach as described in this section should be encouraged not only because of the complexities involved in this type of discharge but also to ensure the success of the discharge.

Discharge planning team members should include the following.

Patient and Family: The most essential members of the discharge team are the patient and the patient’s family.

Particularly for discharge to home, all decisions regarding care should be made in conjunction with the patient and

family, and care should be directed by the patient or, when that is impossible, by the patient’s family.

Discharge Coordinator: One team member should be designated as the coordinator who will serve as a liaison among the multiple disciplines involved.85,92 Because of the special expertise required in respiratory issues and care at alternate sites, including the home, the coordinator is most often a nurse (pulmonary nurse specialist), RCP, or hospital discharge planner. The coordinator is the most appropriate person to define explicitly the roles and responsibilities of each member of a home care team, including the patient and family.

Physician: Overall responsibility for the transition and care of VAIs always resides with the primary physician, preferably a pulmonary or rehabilitation medicine specialist experienced in the management of long-term mechanical ventilation. When the primary physician is not a pulmonary specialist, consultation and input should be obtained from one such specialist. Because sending a ventilator-dependent patient home imposes a significant burden on the family, the physician should inform the patient and family of the burdens as well as the benefits of home mechanical ventilation.93,94 The American Medical Association has outlined the physician’s role in the discharge planning process.87 Social Service/Hospital Discharge Planner: Because of the many reimbursement-related issues as well as the potential need to secure space in a non-ICU acute care facility, intermediate care facility, or long-term care facility other than the home, a member of the social service department frequently coordinates discharge. It is also normally this department’s role to manage the financial aspects of discharge and placement even when discharge coordination is not provided by a social service department member. Financial issues include coverage of durable medical equipment (DME) by health-care benefits, coverage of nursing personnel, and payment for alternate site care. Identification of any health-care benefits covered by a third party, entitlements, and assistance available from community organizations, self-help groups, and from federal, state, or local agencies are important factors to consider in determining the appropriate site of care. The economic costs and social burdens of the long-term care plan should be clarified for the patient and family.

The social worker can also provide an evaluation of the alternate site as well as of community and home resources and support available for long-term care. The available resources identified should be compared with the resources needed for long-term mechanical ventilation to allow responsible planning and decision making. Significant gaps between available and needed resources may be a serious barrier to long-term care, particularly home care.

Psychological support for the patient and family may be provided by the social worker or psychologist. The patient and his or her caregivers should be encouraged to meet other people who use long-term mechanical ventilation and their caregivers. Peer counseling and networking through community support groups and independent living centers can provide valuable information about ventilator use and support and may assist with decision making.

Clinical Staff Nurse or Pulmonary Nurse Specialist: The CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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patient’s primary nurse plays an essential role in teaching basic nursing care skills to the patient and the family, ensuring that other members of the discharge team are aware of the unique needs of the individual, and devising nursing care plans with alternate site or home health agency personnel. Depending on the facility, the continuing care nurse may assume the role of discharge coordinator and work closely with social service to ensure that all aspects of the discharge process progress smoothly.

Respiratory Care Practitioner: The hospital-based RCP, in conjunction with the RCP from the home health or DME service, usually selects the specific types of home respiratory care equipment and ensures that the patient, family, and other caregivers have a detailed understanding of the operation and use of the equipment. In some settings, the RCP may function as discharge coordinator.

DME Provider: When patients are discharged to longterm care, including the home, the equipment and equipment maintenance required for the continuation of ventilatory assistance is provided by the DME company. In addition, beds, wheelchairs, and other general medical equipment are provided by this vendor. (See the checklist in Table 5 for equipment and supplies required beyond the ICU.) It is usually the responsibility of the DME provider to evaluate the long-term care facility and ensure appropriate electrical capabilities and the availability of backup systems. The DME provider also ensures adequate access if patients are wheelchair dependent. RCPs from this service provide respiratory care support after discharge and assist in teaching patients and caregivers respiratory care techniques and operation of equipment in the home and other long-term facilities.

Home Health Agency or Alternate Site Representative: Skilled nursing care of ventilator-assisted patients in the home is provided by home health agency personnel. They may also provide other services, as needed by the patient and family (eg, physical, occupational, speech, and respiratory therapy; social services). Families may also contract with private duty nurses to provide ongoing skilled nursing care, but this should be coordinated through the discharge planning process. When discharge is planned to a nonICU acute, intermediate, or a long-term care facility other than the home, a representative of the clinical staff at the accepting facility should be involved in discharge planning.

The clinical representative is responsible for implementing the plan of care at the alternate site and assuring a smooth transition for the patient.

Appropriate caregivers are needed at the intended non-ICU location. If the location will be in the community, it is particularly important that the caregivers are competent to provide the required care and are also trained for emergency response. Depending on the patient’s functional level, caregivers may be needed on a 24-h basis to ensure continuity of care and patient safety. In the home setting, caregivers need to be appropriately supported by licensed professional staff, including a physician, nurse, and RCP as well as a social worker, physical therapist, occupational therapist, or nutritionist. The responsibility of the professional staff is to provide help with assessment, care coordination, monitoring, teaching, and prescribing appropriate care.

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Some patients are able to do all the necessary care for themselves. However, if the patient is physically limited, caregiver assistance may be needed for most activities of daily living and homemaking as well as for medically related tasks. The patient, family, and both professional and nonprofessional caregivers need to be trained and competent before assuming responsibility for long-term care.

Personal Care Attendant: Ventilator-assisted patients often require ongoing basic nursing care in the home setting. In most cases, this can be provided by nonprofessional attendants hired and trained by the family. Because patient care includes observation, assistance with movement, and basic nursing care, attendants can assume most of these functions and provide a cost-effective alternative to skilled nursing care.32 Occupational Therapist: Occupational therapists should be consulted if the patient must learn new skills to facilitate discharge or rehabilitation. The occupational therapist may participate in home assessment, especially if the patient is wheelchair bound. An occupational therapist also assesses the need for assistive devices that increase patient function and enhance performance of daily activities, and trains patients in work simplification and energy conservation.

Physical Therapist: Many patients require consultation by a physical therapist. Rehabilitation prior to discharge and as an intermediate step before discharge home is frequently needed to increase the patient’s strength, endurance, and function. The physical therapist also assists the patient in choosing the appropriate wheelchair, especially when a motorized chair is needed.

Case Manager: Because the care of a technologydependent patient is resource intensive and expensive, a case manager should be involved in all stages of the discharge planning process. The case manager may be employed by the health-care benefits provider or by an independent agency. Case managers can provide assistance in communicating the complexities of care to the health benefits provider and may be instrumental in obtaining reimbursement of the costs of care at home or in alternate sites when that care is cost-effective.

Summary Recommendation: A patient-specific discharge plan should be developed and implemented by a discharge planning team. Discharging a VAI from an ICU requires a coordinated team of health-care providers, including the individual and his or her family, a physician, social worker/discharge planner, nurse, respiratory therapist, DME provider, home health agency or alternate site representative, physical and occupational therapists, and the insurer’s case manager.

Discharge Plan The discharge plan is developed incrementally by the team through regularly held meetings. The team sets a Mechanical Ventilation Beyond the Intensive Care Unit

target date for discharge and plans the discharge process.

Participation of all team members is essential in all discharge planning conferences in order to ensure that team members, including the VAI and family, are working toward the same outcomes and using compatible teaching processes.

The discharge plan should contain three components: assessment, education and training, and a plan of care.

Assessment should be performed in three key areas: patient stability as noted in the discharge criteria outlined in Tables 3 and 4; the environment and resources in the proposed discharge site; and caregiver skills, education, and training.87 The discharge plan is customized to meet the individual’s needs as identified by the team.

Assessment of the Environment: An environmental assessment should be performed early in the discharge planning process. When home care is planned, this assessment is customarily done by the DME provider’s RCP and the case manager from the home health agency, with input as necessary from a physical therapist, social worker, and nurse familiar with the patient’s needs.95 Factors that should be evaluated include geographic location, available space, and accessibility.

Geographic Location: In developing a plan of care, the geographic site is important. The patient may live in a remote rural area that is not serviced by a home health agency or DME provider capable of assisting in patient care. In some cases, it may also be difficult to locate an intermediate or long-term care facility that admits VAIs and that is near the family and easy for them to visit.

Available Space: Sufficient space is required for the medical equipment and supplies, which include not only the ventilator but also the hospital bed, patient lift, and wheelchair. (See the checklist in Table 5 for equipment and supplies required beyond the ICU.) The home should be clean, have a suitable area for cleaning nondisposable supplies, and not present a health or safety hazard. The environment should also be suitable for assisted daily living activities as well as the prescribed exercise and ambulation program.

Accessibility: Care facilities, including the home, should allow patient mobility and independence outside the site and should be accessible in the event of an emergency.

For patients discharged home, the physical therapist can indicate modifications to the home to enhance accessibility and safety, such as ramping, doorway widening, bathroom remodeling, and placement of assist devices.96,97 Patient accessibility to medical services and the outside community should also be ensured by a working telephone in the home, preferably in the room where the patient spends most of his or her time.

Assessment of Resources at the Proposed Alternate Site of Care The proposed alternate site of care should be assessed for the type and amount of professional services available, the types of support systems available to the patient, and the patient’s financial resources to pay for care.

Professional Services: If a patient is discharged with the

Table 5—Checklist of Equipment and Supplies That Should Be Considered for Ventilator-Assisted Patients Beyond the ICU* Mechanical ventilator† Primary Secondary or backup system (portability†) 12-V battery and connecting cable for emergency (power source†) Ventilator circuit† Exhalation valve Tracheostomy tube adapter/connector Humidifier† Humidifier and heater Humidifier bracket Heat and moisture exchanger Manual resuscitator Oxygen† Oxygen supply system (stationary and portable) Oxygen bleed-in adapter to ventilator Oxygen tubing Tracheostomy collar or t-tube adapter Nasal cannulas Noninvasive patient interfaces Face mask Nasal mask or nasal pillows Mouthpiece: customized, standard, lipseal Head gear, chin straps Suction machine (stationary and portable)† Suction catheters Connecting tubing Suction collection container Gloves Other secretion clearance aids such as cough inex-sufflator† Disinfectant solution Vinegar/water 1:3 Quaternary ammonium compound Tracheostomy supplies Spare tracheostomy tube (including next smaller size) 10-mL syringe used only to inflate or deflate cuff Hydrogen peroxide Tracheostomy dressings or Velcro trach tube strap Tracheostomy tape Sterile saline solution Antibiotic ointment Cotton-tipped applicators Monitors and alarms for ventilator and patient† Patient communication system† Compressor for aerosolized medications Wheelchair Hospital bed and mattress Commode, bedpan, urinal, or elevated toilet seat Patient lifter Safety bars in bathroom Hand-held shower Shower chair *Modified from O’Donohue et al.2 † See text for special considerations concerning these items.

goal of improving quality of life and the objectives of care are largely rehabilitative in nature, sufficient rehabilitation services and professionals should be available to achieve these objectives. Physical, occupational, recreational, and speech therapists may be required in alternate sites or in the home. A physiatrist may be helpful in guiding the rehabilitation program.

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The services of a variety of professionals, such as nurses, therapists (physical, occupational, speech), or hospice and social service personnel, may be required in the long-term care setting, including the home. An important part of the discharge plan is choosing the DME provider. Not all DME providers have personnel trained to manage ventilator-assisted patients in the home; it is essential that the personnel managing the ventilator patient in the home are RCPs and not lay persons trained to be “respiratory technicians.” Ideally, the DME provider should be accredited by the Joint Commission for Accreditation of Health Care Organizations for both equipment management and clinical respiratory services. Because of the DME provider’s major role in patient care, the responsibilities of the DME provider and the DME provider’s RCP should be explicitly defined with clearly established emergency plans. As already noted, it is usually the role of the RCP from the DME provider to train the patient, caregivers, and other staff in the use and maintenance of the ventilator and other medical equipment as well as in some of the care techniques, such as suctioning and tracheostomy care. The DME provider should schedule a RCP to be available on an around-the-clock basis and have backup equipment ready at all times to handle emergencies. The DME provider should also have an emergency response time clearly defined. The RCP should also be expected to perform routine and nonroutine assessment of the patient and to provide follow-up care as defined in the discharge plan of treatment and plan of care.95 If the patient requires home health nursing, the agency selected to provide the care should have adequate staff available and have a nurse case manager to follow the patient and the nursing care and staffing provided. The case manager may work with the patient and family and serve as the liaison to the physician in assessing and arranging for additional services such as physical, occupational, and speech therapy and rehabilitation and social services.

The physician plays a vital role in the care of the patient in alternate sites of care, including the home. The physician may visit infrequently but should be kept apprised of the patient’s status by communication with the clinicians caring for the patient. Based on the information the physician receives, changes can be made in the plan of treatment if an acute problem occurs, eliminating the need for the patient to come to the hospital for treatment in most instances.

A multidisciplinary team comprised of key members of the care team should meet periodically to review the plan of care and to determine whether the patient’s goals are being achieved and the patient’s needs are being met.

These meetings might be held at least every 3 or 4 months and are in addition to the follow-up and problem solving done on routine and as-needed bases. Communication among all team members and the family is a key aspect of care in the home and at alternate sites.

Recommendation: Methods of communication between health-care personnel and the patient 312S

and family in the home should be assured. Mechanisms should be developed to assure timely reporting and management of problems, in order to optimize care of the VAI.

Support Systems: For patients being treated in longterm settings, including the home, anticipating problems that will require emergency outside assistance and making contact with agencies providing those support services are important. Power companies should be notified of the electrical requirements and location of persons who require mechanical ventilation; electric companies should assign these locations a service priority during power failures. Fire departments should also be notified; some fire departments supply and maintain emergency generators for persons who need life-support equipment in the home.

The local rescue and ambulance service should be informed about the needs of the patient so that it is prepared to provide emergency treatment or transport. If special equipment is needed to move the patient, caregivers should request it when calling for emergency medical transport. Most important, a hospital must be designated that will accept the ventilator-assisted patient in the event readmission becomes necessary. In the event of an emergency transport, the ambulance company may be legally bound to take the patient to the nearest hospital, and for nonemergency transports, the patient’s health-care benefits policy may not cover ambulance transport to the hospital from which the patient was originally discharged.

Other support systems for the VAI in long-term settings such as the home may include respite care, hospice services, homemaker services, and transportation to school and to outside recreational pursuits.

Financial Resources: At the outset of the discharge planning process, the amount of funding available from the patient, the patient’s health-care benefits provider, and community resources should be determined as well as the type of professional services covered by the insurer.

Insufficient funding is a major obstacle to the discharge of the VAI.39,98,99 Many carriers will not pay for nursing care in the home or may not pay for skilled care in an intermediate or long-term care facility. Some health-care benefits policies have a lifetime ceiling or cap on benefits.

It is important to determine that the patient is not close to that cap so that the benefits will not be lost after the patient is discharged to a long-term facility, including the home; if the patient is close to reaching his or her policy’s ceiling, an alternate source of funding must be arranged.

Good case management will help the patient use limited resources effectively. Further, there is usually a copayment on the medical equipment and supplies, which could prove to be prohibitive for the patient and family.

It is necessary to verify with the patient’s health-care benefits carrier that all the medical equipment and supplies believed to be essential to the care of that patient are covered. Reimbursement is often based only on a determination of medical necessity or usual practice (often based on national Medicare/HCFA guidelines). Some Mechanical Ventilation Beyond the Intensive Care Unit

devices may not be reimbursable, such as electric hospital beds, motorized wheelchairs, customized seating, and computer-assisted communication aids. In many cases, a secondary or backup ventilator may not be covered even when it is considered essential. A clear written explanation and justification from the physician of the medical necessity for items that are not covered may be helpful. If noncovered items are deemed to be vital to the patient, or if copayments cannot be met by the patient, alternate funding sources will need to be identified.

Assessment of Caregivers: The skills, education, and training of caregivers should be carefully assessed, as should their availability and psychosocial characteristics.

An adequate number of caregivers must be available in the chosen site of care. In health-care facilities, sufficient staffing should be available to cover the around-the-clock needs of the VAI. In the home, because it is extremely difficult for a single person to care for all the needs of a ventilator-assisted patient and continue to care for self and household, a sufficient number of caregivers should be identified to allow time for sleep, work, and respite. These caregivers include family members, licensed health-care professionals, and nonprofessional paid caregivers.31,32 The quality of care can be high and the costs and stress to the family greatly reduced when personal attendants are used in lieu of professional nursing care.32 The identified caregivers should be able and willing to undergo the extensive training required to perform all the patient care procedures and must be able to dedicate the time required to learn these procedures while the patient is still in an acute or intermediate care facility. Not all caregivers are willing to learn procedures they find particularly distasteful, such as suctioning, bladder catheter care, or even bathing. Some caregivers are intimidated by the ventilator and other medical equipment and may be reluctant to learn how to use it. Patience is a virtue when training family members, who may need considerable time to learn the required skills and to feel comfortable with medical tasks such as suctioning. If staff in a health-care facility or home nursing agency staff will be providing care for the patient, these individuals must be trained and their competency assured in care of VAIs. In addition, an adequate number of ventilator-trained nurses should be available to staff the contracted hours of care. Inadequate staffing can delay the patient’s discharge unless other caregivers, such as the patient’s family, are used to cover those hours.

Recommendation: Sufficient personnel should be available in the home and other long-term sites to meet the needs of the patient. In the home, asufficient number of caregivers should be available to allow family members adequate time for sleep, work, and respite.

Education and Training: Not only the patient and family but also those only peripherally involved with the patient must be educated about the care of the VAI. This

may include the emergency medical team, fire department, utility company, police department, and hospital emergency department.

Education and training should cover all aspects of ventilator care, including the care and function of the ventilator, use of accessory equipment, airway care, oxygen therapy, and emergency measures. While the patient is in the hospital, most of the training is done by the hospital-based team members. Respondents of a survey of discharged VAIs in Tennessee outlined an ideal format for the training: “teaching should occur (1) at the bedside, (2) with one or more family members, (3) with only the team member doing the teaching, (4) for a 30-min session, and (5) using demonstration techniques.”100 Scheduled times should be set aside for training caregivers in the techniques that will be used in the home. The patient should be trained to perform as much of his or her own care as possible. The multidisciplinary team must decide who will be teaching and in what sequence. The patient and family must not be inundated with information; tasks should progress from the simple to the more complex. Isolating one or two procedures to teach the caregivers at one time and keeping the number of different instructors to a minimum helps to avoid confusing and conflicting instructions.101 When a family member has learned a skill and can demonstrate competency, he or she should be encouraged to perform this care while the VAI is still in the hospital, with as-needed additional mentoring.

Emergency measures need particular attention, and the patient and family should be taught in a step-by-step fashion. Periodic review is important because emergency situations may not occur at all or infrequently. Teaching methods should be tailored to the individual patient and family; learning styles differ greatly from one person to another.

The patient should be given mechanical respiratory assistance with the type of ventilator that is to be used in the alternate setting as early in the discharge planning process as possible, and the patient should be discharged directly with that equipment. Placing the patient on the portable ventilator allows the hospital staff sufficient time to fine-tune the ventilator settings and assure that the ventilator can meet the patient’s needs. Caregivers should be trained on the ventilator during patient use so that caregivers can learn, under supervision, how the ventilator helps the patient breathe, what types of alarm situations are common to the patient, and how to respond to the alarms.

To document that all caregivers have been trained and have demonstrated proficiency in all required procedures, a skills checklist is essential.85,102,103 The checklist should include not only procedures related to caring for the ventilator but also procedures for tracheostomy care, suctioning, bladder or bowel care, medication administration, and emergencies. Who did the training, who was trained, and the date that the trainee demonstrated competency in performing each of the required procedures should be documented.

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have each caregiver work an 8-h shift with the patient and assume complete responsibility for the care of the patient, with the facility staff acting as backup. Using time in the acute or intermediate care facility in this manner helps to impart a sense of confidence to both patient and caregivers and identify any areas of weakness that require additional training.

Recommendation: Before the patient’s discharge to the alternate site, all caregivers must be trained and demonstrate competency to the satisfaction of the discharge team in all care procedures the patient will require.

Plan of Care: A written comprehensive management plan, covering both respiratory and other medical care, should be developed for the alternate site.2,85,91 The management plan should accomplish the following: identify primary and consulting physicians; identify the local hospital emergency department; specify the appropriate medical center for care reevaluation; designate the roles of health-care providers; designate the role of patients and others in daily care; provide a method to select and train future caregivers; guarantee adequate resources and funding; determine necessary modifications of the care environment; assess community resources to meet health, social, educational, and vocational needs; itemize equipment and supplies needed; identify equipment dealers and services they provide (such as maintenance, surveillance); and outline alternative emergency and contingency plans.2 A checklist for the respiratory care plan is provided in Table 6. This plan should outline how the ventilator is to be used (eg, continuous, nocturnal, with free periods) and the ventilator settings. In patients using invasive ventilation, it should prescribe clean or sterile technique for suctioning, how often tracheostomy care should be done, and how often the tracheostomy tube should be changed as well as whether the tube change will take place in the alternate site or at the hospital. It should also include any procedures necessary to assist the patient with communication, either with speaking valve, cuff deflation, or tube plugging.

The plan for other medical care should describe nursing care procedures such as gastrostomy tube maintenance and activities of daily living. It should specify ways of addressing needs for physical, occupational, and speech therapy. In addition, the comprehensive plan should contain guidelines for caregivers on medical conditions that might require treatment, and on psychosocial developments that might necessitate evaluation, to help the caregivers understand not only what should be reported but also when to contact the physician, nurse, or RCP for assistance.

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Table 6 —Respiratory Care Plan Checklist*† Mechanical ventilator Type and characteristics (including backup when indicated) Manual resuscitator Ventilator power source Electrical requirements Battery/generator powered Ventilator circuit Detailed description of circuits Description of alarms Instructions for cleaning, assembly, and use; documentation of the education of caregivers Use of ventilators Specific times on and off the ventilator FIo2 and range of oxygen Mode of ventilation Desired change with exercise or sleep Acceptable limits of dialed/measured exhaled volume Desired pressure ranges Appropriate alarms and monitors For ventilator dysfunction, power failure For high and low pressure, exhaled volume Others as needed Notification of local emergency care facilities Name and type of artificial airway* Size and type Cuffed or uncuffed, fenestrated Double or single cannula Instructions for care of artificial airway* Cuff inflation (conditions for inflation/deflation) Airway care plan (tube changes, cleaning, problem solving) Airway suctioning Speaking tube operation, if appropriate Adjunctive techniques Medications Aerosol (bronchodilator) Chest physiotherapy Oxygen therapy Secretion clearance devices Communication systems Intercom Physical sound (bell/siren) Telephone/beeper system *For invasive ventilatory support only. List should be tailored to the needs of the individual patient. † Modified from O’Donohue et al.2

site. This plan should be based on the physician’s orders and used by the caregivers and ancillary personnel to guide them in the daily care of thepatient. This plan should also identify the areas of responsibility for the caregivers and homecare professionals who follow up the patient.

Follow-up Care: Members of the home-care team should make periodic visits to the alternate site or home to assess the patient, caregivers, and environment. Immediately after discharge, until the situation stabilizes and the caregivers and patient become accustomed to their roles, these visits may need to be made on a daily basis. After the Mechanical Ventilation Beyond the Intensive Care Unit

initial stabilization period, home-care team members may visit only as often as deemed medically appropriate. When making a visit, the patient’s medical status, functional abilities, mental and nutritional status, and medication usage should be assessed. It is important to determine whether the patient and caregivers are using all medical devices properly, are performing all care procedures as per instruction, and are compliant with the physician’s orders and plan of care.95,104 On all visits to alternate sites, review of performance of procedures and education are mandatory.

The RCP employed by the DME company providing the ventilator is one of the most frequent professional visitors and may, in some cases, be the only health-care professional to visit the VAI at home. These visits are necessary not only to maintain the equipment but also to assess the patient and caregivers and identify any problems with the care of the equipment. If so ordered by the physician, the RCP also performs specific elements of physical assessment, such as vital signs, oximetry, and selected pulmonary function tests. For a patient in stable condition, the follow-up visits should be made no less frequently than every 4 to 6 weeks. More frequent visits should be based on medical or psychosocial necessity.

Regular and timely reports of the RCP’s visit findings should be sent to the physician, and if necessary, the physician may be contacted from the patient’s home for more immediate problems. The patient may also be followed up by the case manager and the home healthy agency nurse. As the patient’s care evolves, a physical therapist or a social worker may also be needed.

The patient in stable condition should be seen by his or her physician at appropriate intervals; more frequent visits are required immediately following transfer to the alternate site and as warranted by the patient’s medical condition. Few physicians make house calls, but the ventilator-assisted patient may be transported to the physician’s office. Most of the patient’s medical needs may be met by telephone, and the other health-care professionals serve an important role as the physician’s “eyes and ears” in the alternate site or home. However, physician home visits are justified and medically necessary for evaluation of changes in clinical status and for case management when care plan evaluation and modification are necessary.

The physician has an important ongoing role as a coordinator of medical and other health-care services for the patient.

Summary Recommendation: An ongoing follow-up program should be an essential element of the VAI’s discharge to an alternate site or home. This follow-up is done by the members of the home-care team, comprised of the patient’s physician, nurses, case managers, therapists (physical, occupational, and speech), social worker, and the DME provider’s RCP. Homecare team members (including RCPs and physicians) should be adequately reimbursed for necessary services in the home.

Rehabilitation of VAIs The major goal of discharge for a VAI is to achieve the maximum functional potential of the individual in order to realize a desired quality of life. Optimal functional status will be different for each patient depending on his or her underlying disease process and goals. Patients with underlying lung disease who require ventilatory support may regain sufficient strength and endurance to resume their daily personal care; the goal for these patients is to increase or normalize their activities of daily living.105 Patients with neuromuscular disease may not be able to perform any self-care. However, they can be taught to direct others in their care and to teach new caregivers, and many maintain gainful employment.93 Assistive devices, environmental controls, and robotics can greatly increase independent function.106,107 The rehabilitation team needs to understand the patient’s desires; if the goals of the team and the patient are not identical, frustration and anger result. For some patients, getting home is the only goal, and they may not initially understand the complex process involved in being at home safely.

Rehabilitation includes medical management, education, therapeutic exercise, nutritional intervention, psychosocial support, speech/communication therapy, alteration of the physical environment to improve functional capabilities, and use of adaptive equipment. Because the underlying disease may impact many systems, a multidisciplinary team approach is best suited for VAIs. Evaluation of the patient by the rehabilitation team members should take place as early as possible during rehabilitation. Each member of the team determines with the patient both short- and long-term goals, and these goals must be achievable and realistic in order to provide the patient with positive feedback on his or her progress.

Limited mobility is a major barrier to an improved quality of life. There are four general methods to improve mobility: improve muscle strength, increase muscle endurance, optimize use of ventilator-free time, and use portable ventilators mounted on specialized wheelchairs or carts. Physical therapy and nursing may begin with range of motion and stretching exercises and progress to sitting the patient in a chair. A bicycle ergometer may be adapted for use while the patient is in bed so as to begin endurance training of the legs and arms. The patient may then progress to sitting on a bike at the bedside. Patients with neuromuscular disease may need splinting and/or bracing to prevent further contractures and to help them sit in a chair. These patients may also benefit from lung expansion exercises, insufflations, and air stacking to assure optimal volumes for coughing. Some patients and families will need to learn transfer techniques from bed to chair, or chair to toilet or bath, such as sliding board, pivot turns, or mechanical lift.

Once medically stable, many patients can benefit from transfer to a specialized rehabilitation unit where they can receive comprehensive rehabilitation. For the patient who will require a specialized wheelchair, the evaluation should begin as soon as permitted by the patient’s condition. Wheelchair construction and modCHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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ification, and approval for third-party reimbursement, may take a long time, which can prolong the hospitalization/rehabilitation and hinder patient mobility. However, wheelchair prescription must often await plateauing of physical function (eg, for spinal cord-injured individuals) and thus must often be deferred until late in the rehabilitation process. When the patient has progressive neuromuscular disease, such as one of the muscular dystrophies, wheelchair modifications should be made with the patient’s disease progression in mind.

For example, initially, the patient may be able to sit upright breathing spontaneously without head support, but within the next 6 months to 1 year, head support, a reclining back or seat, and a ventilator tray for daytime ventilator use may be needed. If the patient needs a recliner, should it have a manual or power control? If the patient is to use a powered wheelchair, will he or

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she be able to get from room to room and out of the house? How will the patient be traveling for recreation and medical appointments?

Physical therapy, when applicable, should begin as a progressive exercise program for upper and lower extremities. The intensity and duration of the exercise should be increased depending on improvements in the patient’s overall medical condition and physiologic response to exercise. Heart rate, respiratory rate, BP, and pulse oximetry should be monitored to assess the response to exercise as the exercise intensity increases. When patients have respiratory dysfunction, the upper extremity muscles are often used as accessory muscles of breathing. Training these muscles is important and should be done initially while the patient is receiving ventilatory assistance to minimize the simultaneous use of the muscles for both exercise and breathing.

Mechanical Ventilation Beyond the Intensive Care Unit

Chapter 5. Equipment and Resources for Care Beyond the ICU Essential for care of VAIs beyond the ICU are not only mechanical ventilators and oxygen but also a wide array of other equipment and supplies that depend on individual needs such as nasal or face interfaces for NIV, tracheostomy dressings for invasive ventilation, or compressors for aerosolized medications. Table 5 provides a checklist of the equipment and supplies that may be needed for VAIs in non-ICU care facilities, including the home, and that should be considered in discharge and care plans. Note that patients, families, and other caregivers must be trained on the actual brands of equipment and supplies that will be used and that training must be completed prior to patient discharge. An essential resource for longterm care of any VAI and his or her caregivers is the DME provider.

Special considerations concerning mechanical ventilators (modes, types, portability, power sources, ventilator circuits, humidifiers) as well as oxygen, suction machines, alarms for ventilator and patient, and patient communication systems are outlined in this section. The importance of DME providers as a basic resource for long-term care is also briefly described.

Mechanical Ventilators The goal of long-term ventilator management beyond the ICU should be based on the principle of using the simplest technology whenever possible. Small, portable ventilators are appropriate both for intermediate and long-term care sites, including the home. Those currently marketed are reliable as well as less complex and expensive than typical ICU ventilators, fit easily on a bedside stand, and weigh 5 to 20 kg.

Occasionally, more complex ventilatory techniques than can be provided via small portable ventilators may be required to ensure respiratory stability in ventilated patients discharged to alternate sites with the goal of weaning. For example, some patients may require a specific wave form to ensure maximum comfort (ie, decelerating wave form in patients with severe COPD). For these select individuals, it may be more desirable and safer to use a hospital ventilator than to exceed the design capabilities of a portable ventilator. Nonportable ventilators may also be indicated during acute decompensation when clinical support requirements exceed the capability of the portable ventilator. However, because hospital ventilators are stationary, a second portable ventilator will be required for patient mobility. Also, a hospital ventilator may not be useable in the home environment due to power or high air pressure demands.

Modes Ventilatory modes on portable ventilators include control (timed), assist/control (spontaneous/timed), assist (spontaneous), and SIMV. The control, assist/control, and assist modes operate in exactly the same manner as in ICU ventilators; that is, each breath is a positive pressure breath either machine or patient triggered. However, the

SIMV mode on all portable home care ventilators differs greatly.81,108 With ICU ventilators, an assist/control mandatory positive pressure breath is delivered at the rate set by the operator, and in between the mandatory breaths, the patient breathes spontaneously by activating a demand system. With home-care ventilators, the mandatory breaths are also delivered as assist/control breaths at the rate set by the operator, but during the spontaneous breathing phase, the patient must draw gas either from the piston chamber, an internal one-way antisuffocation valve, or the exhalation valve. This results in a large increase in patient work of breathing109 and contributes to patient discomfort. At the current level of development, the SIMV mode on home-care ventilators cannot be recommended without the addition of an external continuous high-flow system or at least a one-way valve in the inspiratory limb proximal to a pass-over humidifier to decrease the effort of spontaneous breathing. The use of high-flow systems requires an air compressor and potentially large volumes of oxygen.

Summary Recommendations: Typical ICU ventilators are not recommended for use in long-term settings such as the home; only those ventilators specifically designed for home use should be employed.

The SIMV mode on home-care ventilators is not recommended without modification of the gas delivery system with a one-way valve in the inspiratory limb to allow inspiration from the atmosphere. A continuous high gas flow system may also be used but is not preferred in the long-term home setting.

Types Portable positive pressure ventilators, either volume or pressure targeted, are most often used in long-term care settings. Volume-targeted (or limited, preset, controlled, or cycled) ventilators deliver a preset inspiratory flow (or I:E ratio) until the preset targeted volume is reached, sometimes varying peak inspiratory pressure (Ppeak) in order to achieve this. Pressure-targeted ventilators, however, deliver a preset inspiratory pressure, but inspiratory flow and delivered volume may vary considerably, depending on resistance, compliance, and leaks in the system. In general, volume-targeted ventilators are able to compensate for changes in resistance and compliance by varying inspiratory pressure, whereas pressure-targeted ventilators are able to compensate for leak by varying inspiratory flow.

Although volume-targeted ventilators may be used for both noninvasive and invasive ventilatory support, currently available pressure-targeted ventilators should be used only for noncontinuous or noninvasive ventilatory support (nasal or full face mask or mouthpiece with or without lipseal) unless low pressure and disconnect and antiasphyxia values are in place.

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by a piston, have specific gas delivery wave forms (sine waves), and are relatively inflexible in their gas delivery pattern. To avoid excess inspiratory pressures while attempting to deliver the set volume, most volume-targeted ventilators have a mechanism to continue inspiratory gas delivery after an upper pressure limit has been reached by venting excess volume to the atmosphere. Most volumetargeted ventilators currently available in the United States do not incorporate PEEP/CPAP into the basic unit and are not designed for consistent and precise delivery of oxygen.109,110 However, disposable or interchangeable PEEP valves can be added to the exhalation. Such additions necessitate readjustment of the sensitivity setting; that is, if 5 cm H2O PEEP is added, the sensitivity should be set at 14 cm H2O so that only 1 cm H2O pressure change is necessary to trigger inspiration. In the SIMV mode, the sensitivity readjustment affects only the mandatory breath, and during spontaneous inspiration, the patient not only has to overcome the work associated with breathing through the ventilator but must decompress the PEEP before inspiration is possible,110 another reason for avoiding the SIMV mode with these ventilators.

A volume-targeted ventilator can compensate for changes in resistance and compliance, however, and can also serve to monitor the patient’s physiologic status via changes in airway pressure. Thus, advantages over pressure-targeted systems include the ability to deliver set volumes even in the face of mucous plugging or bronchospasm and the presence of built-in high pressure and low pressure/disconnect alarms. In addition, most have built-in back-up batteries, and because power is required only during the inspiratory phase of the respiratory cycle (unlike blower-based pressure-targeted systems), battery life is longer. For these reasons, portable volume-targeted ventilators are preferred for long-term invasive ventilation in patients who are unable to breathe spontaneously.

Pressure-targeted positive pressure ventilators generally operate by a gas compressor or blower. Because they provide a continuous gas flow, they also provide PEEP/ CPAP and pressure support, sometimes referred to as bilevel (inspiratory and expiratory) positive airway pressure ventilation. Because of the continuous flow feature, a minimal level of CPAP (2 to 3 cm H2O) is always present that can be raised if desired. This provision of PEEP as a basic aspect of machine function distinguishes pressuretargeted ventilators from portable volume-targeted ventilators, and, in addition, the trigger sensitivity is PEEP compensated (ie, the setting of PEEP does not affect the patient effort needed to trigger the ventilator). Like volume-targeted devices, they are not designed to provide precise levels of oxygen. As already noted, most do not incorporate alarms (although optional alarm systems are available) and are designed for noninvasive ventilatory support.

Pressure-targeted systems such as bilevel positive pressure ventilators are often used to deliver NPPV. Bilevel positive airway pressure ventilatory assist devices have several advantages for patients who can breathe spontaneously for substantial periods of time and require mainly nocturnal ventilatory assistance.111 These devices incorporate independently adjustable inspiratory positive airway 318S

pressure and expiratory positive airway pressure, and cycle using flow triggering or time triggering. They are simple to operate, highly portable, lightweight (4.5 to 6 kg), and less expensive than standard portable volume-targeted ventilators. Basic models also lack alarms, which makes them useful in patients requiring only nocturnal ventilatory assistance for whom the alarm may interfere with sleep.

Pressure-targeted systems, such as bilevel positive pressure devices, are also sometimes used in tracheostomized patients who receive assisted ventilation on an intermittent basis. Further, because volume-targeted ventilators cannot fully compensate for the presence of airway leaks and can underventilate patients with uncuffed tracheal tubes, a pressure targeted ventilator may ensure more uniform tidal volumes in the presence of variable leaks for these patients. However, pressure-targeted devices should not be used for patients who are entirely ventilator dependent unless adequate external alarms are added, and risks of mucous plugging and bronchospasm are low. Standard portable volume ventilators that include built-in alarms are usually preferred for this application. Further, despite their disadvantages, standard portable volume-targeted ventilators may also be used for patients who require only nocturnal ventilatory assistance, particularly if they require higher inflation pressures (.30 cm H2O) than can be achieved with currently available bilevel positive pressure devices. Also, patients with neuromuscular disease with secretion problems can be taught to “stack� breaths (ie, to close their glottis between ventilator-delivered breaths) to retain higher lung volumes for assisted coughing, and may prefer volume-targeted ventilation.

Summary Recommendations: If invasive ventilation is necessary, a portable volume-targeted ventilator in the assist/control mode is recommended. Bilevel positive airway pressure devices await further evaluation for this indication.

Simple bilevel pressure-targeted ventilatory assist devices are preferred for patients requiring only nocturnal ventilatory assistance. More sophisticated volume-limited ventilators are recommended for patients requiring continuous ventilatory support or who are likely to require continuous ventilatory support in the near future. Even when spontaneous breathing capability is severely limited (<4 h/d of ventilator-free time), NIV is acceptable if the patient can do GPB; but ventilator disconnect alarms should be used and a backup ventilator with alternative power source should be readily available.

Research Recommendations: The indications, safety, and efficacy of bilevel pressure-targeted ventilatory assist devices need more evaluation for invasive applications.

Comparisons of morbidity and mortality outcomes in patients using invasive vs NIV for continuous ventilatory support are needed.

Mechanical Ventilation Beyond the Intensive Care Unit

Portability Even totally ventilator-dependent persons can be mobile with a small ventilator mounted on a standard or motorized wheelchair or wheeled cart. However, not all ventilator-assisted persons require portability in their ventilator systems. Such a system is warranted in patients who have little free time from the ventilator, when mobility is required for access to emergency and routine medical care, and when quality of life can be improved through increased mobility, both within and outside the home.

Portability in ventilator systems is indicated only when patients take advantage of and routinely use the increased mobility.

Portability requires that the necessary equipment and supplies be incorporated into a mobile system. A tray for the ventilator may be mounted at the rear of a motorized wheelchair; but with a nonmotorized wheelchair, care must be taken to assure that the wheelchair frame is strong enough to support the weight of the ventilator and that the chair is properly balanced. Although the motorized wheelchair battery could be used to power the ventilator, in an emergency, separate batteries for both are recommended for longer battery life, unless a special battery designed for dual use can be installed. A reliable, experienced wheelchair vendor with in-house resources to modify the equipment is invaluable in adapting the chair. For ventilator humidification, heat and moisture exchangers should be considered for mobile systems so that large water-filled reservoirs are not necessary. If the patient requires oxygen, liquid systems are lighter and last longer than compressed gas cylinders and should be considered for incorporation into the mobile system. A battery-powered suction machine and a manual resuscitator should be available as part of all mobile ventilator systems.

Even with a portable ventilator system, travel may be difficult. Adequate oxygen and power for longer trips often require special arrangements. For example, oxygen may be provided by home-care vendors along the route, and the ventilator may be powered by the automobileâ&#x20AC;&#x2122;s battery by using an adapter that plugs into the cigarette lighter.

Air travel is also possible with the use of dry cell batteries and supplemental oxygen provided by the airline. Foresight and planning are necessary to assure safety while traveling.

Recommendation: Sufficient ventilation equipment, power sources, and supplies should be available in long-term care settings to allow patient mobility.

Power Sources Most ventilators require an electrical power source, and requirements are most conveniently met by using standard alternating current. Small ventilators designed for longterm home use draw little power and will not overload normal household circuits, but the electrical requirements of the ventilator and all other accessory equipment (eg,

alarms, monitors, suction machine, oxygen concentrator) should be checked to make sure that the electrical system in the long-term setting can meet these needs. A separate electrical circuit for the ventilator and accessory equipment is the safest way to avoid circuit overloads. The necessity for a backup electrical generator for possible power outages must be determined on an individual basis.

However, these generators are often unreliable if not properly maintained, and they require storage of gasoline.

Most ventilators designed for use beyond the ICU can also be powered by a 12-V direct current battery (deepcycle marine type batteries are recommended). Batteries are indicated for home use when power failures are common, when patients may suffer adverse consequences during even brief outages, and in cases where mobility is important. Length of time during each day that is required for ventilator assistance is the most important factor in determining the need for a battery. A person requiring only nocturnal mechanical ventilation may not need a battery. However, a patient who requires continuous ventilation should have a battery, not only to allow mobility in a wheelchair but also to avoid catastrophic consequences in the event of a power failure. Battery charging should be performed in a well-ventilated area to avoid accumulation of hydrogen gas. Dry cell batteries may be preferable to avoid problems with accidental acid spills from wet-cell batteries, and only dry-cell batteries are acceptable for air travel. Some small portable ventilators have built-in batteries that can provide temporary (,1 h) power for the ventilator in a power failure, thus allowing time to correct the problem or switch to an alternate power supply. In some ventilators, the built-in batteries are charged only when they are plugged in and in use.

These batteries must be checked regularly to assure proper function. The need for an alternate power supply may determine the type of ventilator used in the home.

Recommendation: A backup emergency power source is required for all VAIs in all facilities. In long-term settings, including the home, a 12-V battery is preferred when power failures are common, particularly when patients may suffer adverse consequences during even brief outages. Backup generators may be useful in remote areas where power failures may be prolonged.

Ventilator Circuits Ventilator circuits may be either disposable or nondisposable. In general, nondisposable circuits are preferable for long-term settings, including the home, because of lower overall cost. However, nondisposable circuits must be cleaned periodically. Equipment cleaning techniques vary, but clean rather than sterile technique is usually recommended. Ventilatory tubing should be washed thoroughly with dishwashing detergent and water to remove all foreign matter, disinfected by a vinegar and water or CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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commercial solution, then rinsed and completely air dried.

Clean tubing should be stored in a clean, dry area. Placing clean circuits in plastic bags may aid in maintaining cleanliness prior to use. Some studies have suggested that ventilator circuits in acute care facilities may be changed weekly without increased risk of infection.112,113 The risk of infection in the home is generally considered to be less than in the hospital, so ventilator circuits may require changing less often than weekly, unless soiled by secretions.

Research Recommendation: Further studies on the frequency of ventilator circuits in long-term care sites and the home are needed.

Summary Recommendation: Nondisposable ventilator circuits are preferred for use in long-term settings, such as the home, and may be changed or cleaned at intervals of 1 week or longer.

Humidifiers All patients receiving continuous mechanical ventilation by way of a tracheostomy require a method of warming and humidifying the inspired gas to prevent drying and inspissation of tracheobronchial secretions. Humidifiers may be either the water reservoir type (bubble through or pass over) or the heat and moisture exchange type (artificial nose). Because water-reservoir type humidifiers are more effective, they are recommended for all tracheostomized patients, except during periods away from home or other care setting. During short periods (,12 h) away from the care setting, heat and moisture exchangers are preferred. However, because the maximum absolute humidity provided by these devices rarely exceeds 28 mg/L, they are not recommended for continuous use, especially in patients with increased secretions. Some patients may tolerate brief periods (,4 h) without humidification.114 Humidifiers are not required in many patients using noninvasive nasal or face mask ventilation, but are needed for patients in dry climates or during the winter months or for those using lipseal or mouthpiece ventilation. Unheated pass-over or bubble-through humidifiers will usually provide adequate water vapor content to prevent upper airway drying and discomfort, but heated pass-over humidifiers may also be used if unheated devices are insufficient. A heat and moisture exchanger is not recommended because there is a large volume of gas moving through the device and much of the exhaled gas may not be directed through the exchanger. Also, these should be avoided with bilevel positive airway pressure devices because they add resistance to the circulation and may alter inspiratory and expiratory pressures.

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needed during NIV. Heat and moisture exchangers may be used for short periods (<12h) during invasive positive pressure ventilation, such as during trips, but are not recommended for patients using NIV.

Oxygen Most home-care ventilators are not designed to blend oxygen and deliver precise concentrations of oxygen at all FIo2 values, especially with varying ventilatory patterns.

Most currently available units either increase the FIo2 by adding an oxygen reservoir to the piston gas inlet port or by titrating oxygen into the ventilator at the point where gas leaves the ventilator and enters the inspiratory tubing.115 In noninvasive nasal or face mask ventilation, oxygen may be added at the mask. With any system, however, a constant FIo2 is not possible unless the control mode is used. Because a fixed liter flow of oxygen is added to the system, alterations in minute ventilation (rate or tidal volume) or leaks result in alterations in FIo2. However, with most patients in stable condition, a specific FIo2 with a 65% range can be maintained.110 The blood gas criteria for use of supplemental oxygen during mechanical ventilation are similar to those for patients with chronic lung disease who are not ventilator dependent.116,117 Hypoventilating patients without lung disease (eg, patients with neuromuscular disease or chest wall deformity) usually require no oxygen supplementation once CO2 retention is corrected. When indicated, supplemental oxygen should be added continuously (day and night) to keep the PaO2 above 60 mm Hg. Once the appropriate liter flow necessary to maintain the proper PaO2 is established, monitoring patient oxygenation can be accomplished with pulse oximetry.118,119 However, because of the limited accuracy of pulse oximeters (63%)120 and the variation in accuracy among oximeters (between and within models), a single oximeter should be used to follow oxygenation trends in long-term settings. However, the use of continuous pulse oximetry in long-term settings is rarely, if ever, indicated in adults.

Recommendation: The need for supplemental oxygen during long-term ventilatory support should be established by arterial blood gas analysis, after which periodic assessment of SaO2 may be performed by pulse oximetry. However, continuous pulse oximetry in the home and other long-term care sites is rarely indicated in adults.

Suction Machines Although sterile technique is mandatory in acute and intermediate care facilities as well as in long-term skilled nursing facilities, clean technique is used for suctioning in Mechanical Ventilation Beyond the Intensive Care Unit

congregate living centers and the home. In this technique, nondisposable suction catheters can be cleaned and reused; however, it is still important for caregivers to maintain universal precautions.

Suction machines may be electronically or battery powered. In areas prone to electrical outages or where mobility for extended periods is needed, battery-powered units are indicated.

Recommendation: Airway suctioning in acute and intermediate care facilities as well as long-term skilled nursing facilities should be performed using sterile technique. Suctioning in other longterm settings such as the home should be performed using clean technique, with maintenance of standard precautions.

Alarms for Ventilator and Patient All currently manufactured volume-targeted positive pressure ventilators are appropriately alarmed for home use. Most of these ventilators include alarms for high pressure, low pressure/apnea, low battery, power switch off, ventilator malfunction, and power failure. However, no alarms are built into the older volume-targeted units and pressure-targeted bilevel units; most of these units require the addition of high- and low-pressure alarms.

A remote alarm and patient call system to signal attendants are needed for all patients requiring continuous support. Such alarms are also useful for the patient who lives in a large or multilevel home where alarms may not be heard by caregivers if they leave the room. An emergency light and telephone access are also useful for many individuals.

Patient Communication Systems Not all ventilator-assisted persons with a tracheostomy can speak using the techniques described in chapter 3.

However, effective communication is required not only for social interactions but also, most importantly, so that the

patient can direct his or her own care and inform others of potentially dangerous medical situations. An appropriate method of communication, including alarm devices, should be available for all ventilator-assisted persons beyond the ICU. The most commonly used ancillary methods of communication include the electronic larynx and resonating and amplifying devices.121 The hand-held electronic larynx, which is placed on the outside of the neck, is commonly used by laryngectomy patients. The electronic resonator, which is activated by a small tube placed in the mouth, does not require functional upper extremities.

Visual methods vary from writing with ordinary pen and paper for persons with good hand and arm function to typewriters or computer terminals driven by a stick held in the mouth or by a sip-and-puff switch. Consultation with a speech and language pathologist experienced with communication devices is often useful.

Recommendation: A method of communication should be available to all VAIs. Communication methods range from an uncuffed tracheostomy tube and a one-way speaking valve to a bedside computer.

DME Providers DME providers/home care equipment vendors are an essential resource and should be chosen on the basis of their ability to provide and maintain the necessary equipment as well as their ability to assist in patient follow-up.

A 24-h equipment maintenance service and an adequate equipment inventory to meet equipment failures in longterm settings such as the home are mandatory. Close liaison with the discharge planning team and with other care personnel must be established. Providers who make home visits must be knowledgeable and experienced in patient education and should review and reinforce patient education during each visit to the home or other long-term setting. The use of RCPs, who are skilled at both patient and equipment assessment and education, is essential.

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Chapter 6. Management of Pediatric Patients Requiring Long-term Ventilation Successful management of the ventilator-assisted pediatric patient requires close persistent attention to the changing anatomy and physiology of the developing respiratory system. In most adolescents, respiratory system function is similar to that of adults, but in normal infants and young children, the respiratory system is immature, unstable, and subject to dysfunction as well as constant changes through growth and development.122-125 Because of pulmonary and chest wall mechanics, respiratory load is increased; there are fewer alveoli and therefore less surface area available for gas exchange and less elastic support for intrapulmonary structures. This predisposes the infant to manifest lung disease such as atelectasis, airway obstruction, increased pulmonary vascular resistance, and pulmonary edema due to developmental immaturity of pulmonary mechanics. Less ventilatory muscle strength and endurance increase the infantâ&#x20AC;&#x2122;s susceptibility to fatigue.124,125 In addition, neurologic control of breathing in the infant is an intrinsically unstable system, which predisposes to apnea and hypoventilation.122 As the child grows, the balance between these factors is continually changing. Further, infants and young children are also subject to external factors that influence the function of the respiratory system, such as frequent respiratory tract infections in early childhood.126-129 The ability to sustain spontaneous ventilation can be viewed as a balance between neurologic mechanisms controlling ventilation together with ventilatory muscle power on one side, and the respiratory load, determined by lung and airway mechanics, on the other.130,131 Significant dysfunction of any of these three components of the respiratory system may impair the ability to breathe spontaneously.128,132 In normal children, central respiratory drive and ventilatory muscle power exceed the respiratory load, and they are thus able to sustain adequate spontaneous ventilation. However, if the respiratory load is too high and/or ventilatory muscle power or central respiratory drive is too low, ventilation may be inadequate, resulting in respiratory failure. If the abnormalities cannot be corrected, the child will require long-term ventilatory support. Chronic ventilatory failure, then, is the result of an uncorrectable imbalance in the respiratory system, in which ventilatory muscle power and central respiratory drive are inadequate to overcome the respiratory load.

Once the decision has been made to institute long-term mechanical ventilation in an infant or child with a stable or progressive disorder of the respiratory system, caregivers should consider the adverse impact of a long-term ICU confinement on the life of the child and family. For some children requiring prolonged hospitalization, mechanical ventilation may be performed in a non-ICU setting where psychosocial development and quality of life can be improved. Long-term ventilatory support in the home (or in an alternative home-like setting) is, for many patients, a safe and relatively inexpensive alternative that optimizes overall health, rehabilitative potential, psychosocial development, and family well-being.2 This chapter focuses on ventilator management of 322S

infants and children, and of those adolescents for whom pediatric considerations are more applicable because of immaturity. The first section examines the diagnoses requiring ventilator assistance for children and infants.

The following sections focus on special considerations for children and infants concerning criteria for discharge to non-ICU facilities, sites for care, ventilation techniques, and ventilation equipment and use.

Pathophysiologic Considerations Infants and children may require long-term ventilatory support due to three categories of respiratory system dysfunction: increased respiratory load (due to intrinsic cardiopulmonary disorders or skeletal deformities), ventilatory muscle weakness (due to neuromuscular diseases or spinal cord injury), or failure of neurologic control of ventilation (central hypoventilation syndrome).127-129 Those children who have stable disorders may qualify for care beyond the ICU.2 Diagnoses for which long-term ventilatory support outside the ICU might be applicable for infants and children are shown in Table 2.

Increased Respiratory Load (Cardiopulmonary Disorders or Skeletal Deformities) The criteria for chronic respiratory insufficiency due to primary cardiopulmonary disorders in infants and children are listed in Table 7. These criteria require therapeutic intervention to resolve the condition. If medical treatment is unsuccessful, mechanically assisted ventilation must be considered and should be instituted in many children. The criteria vary somewhat depending on the specific patient, age, and diagnosis.

It is important to remember that the chronic pulmonary diseases that appear severe in infancy may improve with age.133,134 Normal growth results in an increase in the normal to abnormal ratio of the lungs, often translating into improved physiology. Thus, many infants and young children with pulmonary disease who require mechanical ventilation will improve.126,133,134 This justifies prolonged mechanical ventilation due to the potential for growth and development of the lungs. With mechanical ventilation, such infants will be chronically stable, and lung growth will permit eventual withdrawal from mechanical ventilation, whereas without mechanical ventilation, they will be unstable, have frequent acute decompensation (including lung damage), and fail to thrive. This is an important difference between children with chronic lung disease and most adult patients with COPD. Bronchopulmonary Dysplasia: The chronic lung disease that has most frequently been treated with prolonged mechanical ventilation in infants and children is bronchopulmonary dysplasia (BPD).135,136 BPD represents sequelae of neonatal lung injury and is usually diagnosed in an infant who had bona fide requirements for mechanical assisted ventilation or supplemental oxygen during the first month of life, and who has clinical pulmonary disease and radiographic changes after such treatment.126 Relatively few of these patients require prolonged ventilatory support, and children with BPD can often be weaned at Mechanical Ventilation Beyond the Intensive Care Unit

Table 7—Criteria for Chronic Respiratory Failure due to Cardiopulmonary Disorders in Infants and Children Clinical criteria • Decreased inspiratory breath sounds • Increased retractions, use of accessory muscles • Cyanosis breathing room air • Decreased level of normal activity/function • Poor weight gain (mass) (IMPORTANT) Physiologic criteria • PaCO2 .45 mm Hg • PaO2 ,65 mm Hg • Oxygen saturation ,95% breathing room air

home,126,133,134,137 but a small number of infants with the severest disease do require long-term support. In general, these patients are in unstable condition, and proper patient selection is important.

Hypoxia and Hypercapnia: Many children require mechanical ventilation primarily to improve growth impeded by chronic ventilatory insufficiency (hypoxia and hypercapnia). This is a group of patients in unstable condition with an uncertain prognosis, even with mechanical ventilation. However, many have been successfully treated beyond the ICU or at home,135,136 and some have been weaned from ventilatory support at home.138 In general, this is a higher-risk group than children requiring mechanical ventilation for neuromuscular diseases.139 Other Types of COPD: Other types of pediatric COPD have not been treated with long-term mechanical ventilation as frequently as BPD. Some patients with severe pulmonary disease from cystic fibrosis theoretically may require prolonged mechanical ventilation, but these patients are usually young adults by the time this need occurs. However, despite the increasing use of home mechanical ventilation for adults with COPD, its use in cystic fibrosis remains uncommon. Other rare types of pulmonary disease may occasionally require prolonged mechanical ventilation. In children, chronic pulmonary diseases often are accompanied by airway hyperreactivity, which in general must be controlled reasonably well to enable successful home ventilation.126,140-142 Restrictive Parenchymal Lung Diseases: These are often more difficult to manage with long-term mechanical ventilation. However, infants with hypoplastic lungs may be candidates. For some infants, prolonged mechanical ventilation may be used as a bridge to lung transplantation if there is little likelihood of improvement in lung function.

In general, these children are poor candidates for home ventilation and have a poor prognosis. As with other groups of patients, there are many reasons for instituting long-term mechanical ventilation. Some patients with poor prognosis for long survival may achieve a better quality of life for the last several months of life, which justifies use of this technique.

Chest Wall Abnormalities: Severe scoliosis, kyphosis, or thoracic dystrophy are among the chest wall abnormalities that may cause restrictive disease severe enough to require long-term mechanically assisted ventilation. The prognosis for these children is variable and unpredictable. In some

Table 8 —Criteria for Chronic Respiratory Insufficiency due to CNS, Neuromuscular, and Skeletal Conditions in Infants and Children Clinical criteria • Weak cough • Retained airway secretions • Increased use of accessory muscles • Incompetent swallowing • Weak or absent gag reflex • Decreased level of normal activity/function (IMPORTANT) Physiologic criteria • Vital capacity ,15 mL/kg • Inspiratory force ,20 cm H2O • PaCO2 .40 mm Hg • PaO2 ,70 mm Hg • Oxygen saturation ,97% breathing room air

children, the chest wall abnormality will cause progressive restrictive pulmonary disease, ultimately resulting in death even with mechanical ventilation. Other children appear to improve clinically, even in the absence of changes in the chest wall anomaly. Some patients have even been weaned from mechanically assisted ventilation.

Recommendation: Caregivers should take into account the effect of lung and chest wall growth and development as a rationale for long-term mechanical ventilation and how the site of delivery will affect growth and development.

Ventilatory Muscle Weakness (Neuromuscular Diseases or Spinal Cord Injuries) Ventilatory muscle weakness results in inspiratory muscle weakness, causing inability to inspire fully, resulting in atelectasis; expiratory muscle weakness, causing inability to cough, predisposing to pulmonary infection; and hypoventilation, resulting in inadequate gas exchange. The clinical and physiologic criteria for chronic respiratory insufficiency due to CNS, neuromuscular, and/or skeletal conditions in infants and children are listed in Table 8.

These criteria require therapeutic intervention to resolve the condition. If medical treatment is unsuccessful, mechanically assisted ventilation must be considered and should be instituted in many children because it often decreases weakness and improves spontaneous ventilation in a variety of conditions associated with ventilatory muscle weakness (metabolic, neurologic, muscular, and structural). With prolonged mechanical ventilation, these conditions can improve due to growth and development of the lung parenchyma and chest wall (including increased muscle strength) and/or slowing of progression (eg, the positive effect on progressive thoracic deformity and delay of chest wall deformity in Duchenne muscular dystrophy,143 and the elimination of cor pulmonale). Mechanical ventilation also often causes clinical improvement, and the use of nocturnal mechanical ventilation commonly imCHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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proves the patientâ&#x20AC;&#x2122;s ability to sustain adequate ventilation during wakefulness. However, in a large, randomized French study that investigated the outcomes of early use of mechanical ventilation in patients with Duchenne muscular dystrophy but without hypercapnia,144 the use of nasal PPV did not delay the onset of hypercapnia or alter the decline in FVC. Ventilatory muscle weakness, dysfunction, or paralysis can occur because of neuromuscular disease (motor neuron disease, primary myopathies affecting the diaphragm and ventilatory muscles), or as a result of spinal cord injury. Note that because children with ventilatory muscle weakness often do not have severe intrinsic or parenchymal lung disease, they are good candidates for home mechanical ventilation.2,129,145 Motor Neuron Disease: Motor neuropathies affect the phrenic nerve, resulting in diaphragm weakness or paralysis.146-150 Newborn infants may experience unilateral or bilateral diaphragm paralysis from birth injury129 due to stretching of the phrenic nerve, although phrenic nerve function will often return after several months. Diaphragm plication may help to wean an infant before phrenic nerve function returns, however, and does not hinder subsequent phrenic nerve function when the nerve heals.129,151 Spinal muscular atrophy is a common motor neuropathy causing chronic respiratory failure.152 The onset may be during infancy or adolescence. Ventilatory failure will eventually occur in most patients. For these patients, home mechanical ventilation both counteracts hypoventilation and is associated with prolonged life and improved quality of life.152 Static motor neuropathies can also cause chronic respiratory failure. Even though the neurologic lesion does not progress, children will often become ventilator dependent at or near the pubertal growth spurt.127,137 This occurs because the ventilatory muscles do not increase in strength while increased body mass places an increased functional demand on these muscles.122,131 Primary Myopathies Affecting the Diaphragm and Ventilatory Muscles Directly: Although the phrenic nerves may be normal, stimulation of weakened muscle does not produce a normal contraction. Poliomyelitis, now uncommonly seen in children, is a primary motor neuropathy.

Duchenne muscular dystrophy, today the most common myopathy producing respiratory failure,146-149 is another progressive disorder, with ventilatory failure eventually occurring in all patients. Home mechanical ventilation counteracts the hypoventilation and can improve the length and quality of life.

Congenital myopathies are often static. However, the conditions of children will deteriorate functionally with growth because weakened muscles are unable to cope with increasing body mass. Typically, during the pubertal growth spurt, children become nonambulatory and ventilator dependent.

Nemaline myopathy is a group of myopathies with variable prognoses. Some are static, some improve, and some are progressive.

Spinal Cord Injury: High spinal cord injury (above C-3) causes diaphragm paralysis. Bilateral diaphragm paralysis virtually always results in respiratory failure in infants and 324S

young children, and unilateral diaphragm paralysis frequently results in respiratory failure.129 This is especially true if there is paradoxic motion of the paralyzed diaphragm (pendelluft motion). In this case, during inspiration, the functional hemidiaphragm generates a negative intrathoracic pressure, which draws the paralyzed diaphragm upward into the thorax. During exhalation, the relatively positive intrathoracic pressure pushes the paralyzed hemidiaphragm down while the functional hemidiaphragm rises. Thus air is moved back and forth from one lung to the other without introducing much fresh air into the lungs. In some infants, surgical stabilization, or plication, of the paralyzed hemidiaphragm may result in enough improvement to allow weaning from mechanical ventilation.129,151 Trauma that causes permanent spinal cord injury above C-3 will result in permanent ventilator dependence.

Failure of Neurologic Control of Ventilation (Central Hypoventilation Syndrome) Disorders of neurologic control of breathing that are severe enough to cause chronic respiratory failure are uncommon to rare.128 The clinical and physiologic criteria for chronic respiratory insufficiency due to CNS, neuromuscular, and/or skeletal conditions in infants and children are listed in Table 8. These criteria require therapeutic intervention to resolve the condition. If medical treatment is unsuccessful, mechanically assisted ventilation should be considered.

Congenital Central Hypoventilation Syndrome (Ondineâ&#x20AC;&#x2122;s Curse): This disorder has an unknown cause and is characterized by failure of automatic control of breathing.127,153-165 Hypoxia and hypoventilation are worse during sleep than in wakefulness.145,166 Some children can sustain adequate ventilation during wakefulness but require assisted ventilation during sleep155,160,167 while others require full-time ventilatory support.167,168 Pharmacologic respiratory stimulants do not improve breathing in these patients.169,170 This is a lifelong disorder that does not improve with age.161 Acquired Central Hypoventilation Syndrome: Children quite rarely develop acquired forms of central hypoventilation syndrome as the result of brainstem trauma, tumors, hemorrhage, surgery, radiation, or cerebrovascular accidents. These have a clinical and physiologic picture like that of congenital central hypoventilation syndrome (CCHS).171 Myelomeningocele: Children with myelomeningocele usually have the Arnold-Chiari type II malformation of the brainstem,132,133,172 which is a defect of fusion of the occiput and atlas (a funnel-shaped posterior fossa), as well as hydrocephalus and herniation of the medulla and cerebellum through the foramen magnum. This results in compromised neurologic control of breathing in all patients.133 It could be predicted that the higher the spina bifida lesion, the worse the ventilatory muscle weakness component; but although this may be true as a general statement, studies have not correlated all disturbances in ventilation with the level of the lesion.132,133 However, a small number of myelomeningoMechanical Ventilation Beyond the Intensive Care Unit

cele patients are severely affected and require longterm mechanical ventilation.128 These patients should be assessed carefully for candidacy for home mechanical ventilation; they often have severe neurologic damage that ultimately causes death despite mechanical ventilation.

Developmental Disorders of Neurologic Control of Breathing: These disorders, which include apnea of prematurity, generally resolve with age, and patients with such disorders are not candidates for home mechanical ventilation.

Recommendation: The primary pathophysiology, anticipated complications, and expected clinical course due to specific pathophysiology should be used to guide the institution and application of long-term mechanical ventilation in pediatric patients.

Criteria for Discharge to Non-ICU Facilities Children with chronic respiratory failure and relatively stable ventilator settings, either part-time or full-time dependent, are candidates for long-term ventilatory support outside the ICU, including the home.2 With proper patient selection, home care is safe and optimizes the patientâ&#x20AC;&#x2122;s quality of life, rehabilitative potential, and reintegration with the family. As in adults (see chapter 2 and Tables 2 and 3), stability of the respiratory system, ventilatory requirements, and other medical conditions must be considered. This section highlights issues unique to children.

Respiratory System Stability The pulmonary component of the disorder is usually the most likely to provide instability. In children, the variability of the pulmonary component is often the result of bronchospasm, but may also be due to fluctuations in pulmonary compliance from lung water changes (edema) and pulmonary hypertension because of the highly reactive pulmonary vasculature observed in children.

Ventilator Requirement Stability Because delivering high peak pressures in the home is difficult, the requirement for Ppeak should be ,40 cm H2O. In some cases, specific pathophysiology (eg, tracheomalacia, bronchomalacia) may indicate the use of CPAP. Under these circumstances, CPAP can be delivered by circuits designed for this purpose, provided that families are well prepared for their use and proper monitoring is put in place.

Noninvasive techniques may be used in certain circumstances. However, nasal masks can be poorly tolerated in young children.

Stability of Other Medical Conditions For optimal care outside the ICU, all other medical problems should be controlled and relatively stable according to predetermined criteria.

Recommendation: Site-appropriate clinical stability criteria should determine when and if pediatric patients requiring long-term mechanical ventilation may be safely transferred from an ICU.

Sites for Care Appropriate equipment, personnel, expertise, and surveillance must be available to provide medically necessary respiratory care and assure the safety of ventilator-assisted children. Different facilities (acute, intermediate, longterm) have different resources, and therefore the level of care varies (Fig 1). Each facility may also have its own criteria for determining medical stability and the medical conditions that can be safely treated. General guidelines are as follows: Acute Care in the ICU: Children with unstable, acute respiratory failure, such as respiratory distress syndrome, sepsis, or severe pneumonia, are best treated in the ICU because the disorder is unstable, and the patient requires frequent or continuous monitoring as well as frequent changes in ventilator settings. Such care cannot generally be provided outside the ICU. Non-ICU Acute Care: Once a child has developed a chronic, relatively stable disorder, such as slowly resolving pneumonia in a child with neuromuscular disease or chronic pulmonary disease, the child may be cared for outside the ICU. For some children, prolonged but not indefinite need for mechanically assisted ventilation can be anticipated. Examples include patients with a potentially reversible neuromuscular disorder, such as infantile botulism or Guillain-Barre´ syndrome. These children may be cared for in the hospital in designated non-ICU settings such as a specialized respiratory care unit.173 For discharge to this type of care, clinical stability generally means no major diagnostic considerations or changes in therapeutic interventions requiring ICU resources within 1 week, but patients with greater or less stability may be cared for, depending on the individual unit capabilities.

Long-term Care: For other children, the need for mechanically assisted ventilation may be anticipated to be lifelong or to be lasting for several months or years, such as in patients with quadriplegia, muscular dystrophy, or CCHS. These children may benefit from care in a longterm setting such as the home. For discharge to home care, clinical stability means no major diagnostic considerations or changes in therapeutic interventions requiring hospitalization within 1 month. However, home care might also be considered for some patients whose respiratory failure is anticipated to be transient if the care can be provided less expensively and with greater potential for CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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psychosocial development and family function. Similarly, alternate community sites, such as a congregate living center or other home-like setting (medical day care, medical foster care, respite care), may supplement and/or substitute for home care and provide a quality of care that permits optimization of rehabilitative potential at less cost than in-hospital care. The basic discharge criteria for both groups of patients are similar.

Although successful care of the ventilator-assisted child at home demands compulsive attention to detail on the part of medical personnel, the child, and the family, the potential rewards are great. Many ventilator-assisted children do quite well at home, and home care of these patients can be designed safely and cost effectively. The high motivation of parents for the care of their children in the home often results in a high quality of care. After the transition from hospital to home, parent-child relationships and child development are enhanced. Potential for rehabilitation in all aspects of daily living is increased, and many children will experience a near-normal lifestyle.

However, families must be provided with adequate support, including a plan for respite care.

In all cases, flexibility must be used in deciding where an individual child can receive optimal care, and the degree of stability in the patient’s disorder must be matched to the facility’s resources. The degree of care required should be based on the patient’s clinical needs rather than the patient’s prognosis alone. Quality of life is a criterion for instituting long-term mechanical ventilation in some children. Even if patients are not in danger of death or serious health risk, they may enjoy a better quality of life from the greater strength and endurance that ventilatory support can provide to some patients.

Recommendation: Caregivers should take into consideration anatomic, physiologic, and developmental differences among infants, children, adolescents, and adults that affect decisions about long-term ventilation. Caregivers and others responsible for long-term ventilation at home or an alternative community site should also determine criteria of clinical stability appropriate to pathophysiology causing chronic respiratory insufficiency that are suitable to the site of delivery (care setting).

Financial Issues The costs of care for ventilator-assisted infants and children, like the costs of care for ventilator-assisted adults, are highest in the ICU and decrease with discharge to non-ICU facilities, including the home (Fig 1), although the actual decreases in costs depend on many factors specific to each setting and each patient’s needs. Enhancing quality of life, a basic objective for VAIs, is usually more achievable in the less costly settings.

Costs of caring for ventilator-assisted children can be reduced, and quality of life improved, by reducing the 326S

length of hospitalization. Many ventilator-assisted children remain hospitalized for lengthy periods of time, even after they meet the criteria for successful discharge.99 Several factors, not all of which are medical, contribute to these delays in discharge. One study found that the mean length of the hospitalization from which the ventilator-assisted child was initially discharged home was nearly 7 months and that nearly 75% of the total hospitalization time was required to resolve nonmedical issues. For example, it took 4 months for some third-party payers and health-care funding agencies to approve home-care funding but only 3 weeks to get the child home once funding was approved.99 The costs of purchasing equipment for home mechanical ventilation are roughly equivalent to 3 to 4 days of ICU care and thus are relatively small. The costs of nursing care are high because the respiratory system of infants and young children is immature and unstable, and families cannot usually provide all the medical care required at home for a ventilator-assisted child without help. Costs depend on the number of hours per day nursing is required and the training level of the caregivers. Infants and young children using full-time home mechanical ventilation may require 16 to 24 h/d of in-home nursing care; older children, or children with more stable medical conditions, may require less, or even no, in-home nursing care. However, even 24-hour-a-day RN-level home care is only about one third as expensive as care in an ICU. One study found that in Pennsylvania, monthly hospital costs for ventilator-assisted children averaged $58,600, but that home care of these children, including 12 to 15 h of nursing care, resulted in a 63% reduction of costs.174 Further, nonprofessional aides and personal attendants, such as parents, can be trained to provide a high level of medical care for these children.

As yet, to our knowledge, there are no published studies based on acceptable cost-accounting principles that provide valid cost comparisons of long-term mechanical ventilation according to care setting by comparing, for example, costs of care at home vs care in acute settings. Studies are needed that take into account real direct costs as well as indirect costs (increased costs due to increased space, electricity, health-care benefit, taxes) and opportunity costs (lost work, productivity). Many costs are increased due to approval requirements (eg, inflexible rules and regulations that do not permit individual case adaptability) as well as to bureaucratic/organizational procedural barriers (such as limitations of benefits determined by public policy, employer preference, or health-care benefit regulations). Cost savings could be generated by professional interactions and flexible negotiations among providers and payers. VAIs represent catastrophic costs and require physician case management and other innovative approaches to cost, quality, and risk management.175 This population is best served not by rigid policies and procedures, but by case-by-case flexible benefit management.

For ventilator-assisted children in a home setting, what works best is creative benefits management with negotiation based on individual needs and less stringent guidelines.176 Mechanical Ventilation Beyond the Intensive Care Unit

Research Recommendation: Cost outcomes research must be done to evaluate care setting alternatives for long-term mechanical ventilation in children.

Recommendation: Physician case management is recommended to determine medical necessityand coordinate the home-care plan after discharge of patients who require long-term mechanical ventilation at home.

Outcomes of Care in Non-ICU Facilities Few studies have examined outcome or success of providing care for ventilator-assisted children beyond ICUs; more are needed. However, one researcher has described a program in which an ICU adopted policies that eased restrictions on the activities of ventilatorassisted children and thus both created a more normalized environment and served as a first step toward permitting care of ventilator-assisted children outside the ICU.173 Outcomes of mechanical ventilation in a home setting in infants and children have been examined in several studies,135,136,146,152,158,160,163,171,177 and most show good longterm outcome for these children. The goals in home mechanical ventilation are as follows: to ensure medical safety; to optimize quality of life, rehabilitative potential, and integration with the family; and to achieve developmental potential for age-appropriate education level via appropriate applications of early intervention strategies.

Safety: All studies showed that appropriately selected infants and children can be safely ventilated at home.135-137,146,152,158,160,163,171,178 In addition, home ventilators may be used safely. Ventilator equipment failure is neither a frequent nor a serious problem for ventilatorassisted patients treated at home. In a survey of 150 ventilator-assisted patients over 1 year to assess the frequency of home ventilator failures, the causes of such failures, and the risk for injury or death they pose, no adverse outcomes, deaths, or serious injuries were associated with home ventilator failure.179 An analysis of the responses, which were made to the patientsâ&#x20AC;&#x2122; home respiratory care providers, found that there was one home ventilator mechanical failure per 10,925 hours of use (or approximately one failure for every 1.25 years of continuous use); that improper care, damage, tampering, or improper use of the ventilator by caregivers was not uncommon; but that generally ventilators could be replaced or fixed at the home.179 Quality of Life and Developmental Potential: The challenge of home mechanical ventilation with infants and children comes with optimizing quality of life, rehabilitative potential, and growth and development. The measure of a childâ&#x20AC;&#x2122;s ability to participate in society is attending school. Placement of a ventilator-assisted child in the school system has often been resisted by teachers and school district officials, but successful school attendance by increasing numbers of ventilator-assisted children has convinced most school districts that many of these children can and should attend regular school, especially if

they require assisted ventilation only during sleep. Whenever possible, it is desirable to educate a ventilator-assisted child in as normal a school setting as possible. When the discharge team works closely with school district personnel, the optimal educational setting for the child can often be arranged. Educating school officials about the true nature of the childâ&#x20AC;&#x2122;s disorder often eases fear and facilitates school placement and acceptance. Some children are obviously better served in special schools, but this usually depends on disease involvement of other systems besides the respiratory system. Many ventilatorassisted children have been successfully attending school for years.135,136,146,152,158,160,163,171 In addition, once families become accustomed to caring for their ventilator-assisted child at home, they become creative at participating in quality activities with their children, such as camping, Boy Scouts and Girl Scouts, swimming, and vacations.

Research Recommendation: Continuing clinical, developmental, and quality-of-life outcomes research is needed to evaluate care settings for long-term mechanical ventilation.

Ventilation Techniques The decision to initiate long-term ventilatory support in a pediatric patient may be made electively or nonelectively. In the past, most decisions to begin long-term ventilatory support were made nonelectively.150,152 When acute respiratory failure developed as a result of a respiratory infection or pneumonia, intubation and mechanically assisted ventilation were initiated as lifesaving measures. Subsequently, weaning the child was not possible.

The transition to long-term ventilatory support was made because it was emotionally difficult to stop mechanically assisted ventilation abruptly in an alert child who might experience severe distress without it. Thus, the child and family, who may have had no opportunity to discuss this therapeutic option in advance, had little choice about whether to initiate long-term ventilatory support.

The decision to initiate long-term ventilatory support is increasingly being made electively to preserve physiologic function, realize the growth and development potential of the lungs and chest wall, and improve the quality of life.150,152 Using this decision-making approach, the health-care team begins the discussion of options for long-term care, including long-term ventilatory support, with children who can be expected to develop chronic respiratory failure. The most obvious example is the child with a progressive neuromuscular disorder, such as spinal muscular atrophy or muscular dystrophy.150,152 Another example of an appropriate candidate for ventilatory assistance is the child with chronic pulmonary disease who has frequent acute decompensations requiring repeated or prolonged hospitalizations and fails to thrive. Discussion should begin long enough before the anticipated need to allow the child and family to evaluate options thoroughly and discuss their feelings.

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Various approaches to NIV may be attempted first on a nocturnal basis. However, noninvasive mechanical ventilation in infants and children has had limited use,180 even though it is increasingly emphasized in adults (see chapter 3). Noninvasive forms of mechanical ventilation are more difficult technically to apply in infants and young children than in adults. Further, noninvasive techniques may not be appropriate for use in children. These techniques require patient motivation and active cooperation. At this time, more outcome studies with NIV in centers with pediatric experience with different disease states are required before the technique can be recommended for general or specific application with infants and children.

If noninvasive support is not tolerated or is unsuccessful, if it is ineffective or not chosen, or if the small childâ&#x20AC;&#x2122;s ventilatory demands become greater, then a tracheostomy should be performed electively before the patient has developed major complications of chronic respiratory failure. Once the tracheostomy is performed, the child can begin nocturnal mechanical assisted ventilation electively.152 This often prevents the development of pulmonary hypertension (cor pulmonale) and other complications of chronic intermittent hypoxia because hypoventilation is worse during sleep than during wakefulness.181 This strategy both improves endurance for spontaneous breathing while awake and enhances quality of life because the child is initially ventilated only during sleep.152 With elective mechanical ventilation, the desired outcome is medical stability with growth and development of the lungs, and eventual withdrawal from assisted ventilation with enhanced functional reserve.

Recommendation: Elective long-term mechanical ventilation may be considered in infants and children to promote growth and development, achieve clinical stability, and enhance functional reserve.

Recommendation: More experience with NIV is needed in pediatric patients before it can be generally recommended.

Ventilation techniques that may be used for infants and children include PPV (via tracheostomy or nasal mask), NPV (via chest shell or tank), diaphragm pacing, rocking bed, and pneumobelt. A tracheostomy is usually indicated for access to the airway in small children using positive pressure ventilators in the home setting. A tracheostomy or CPAP may also be required for infants and young children using NPV, such as chest shell or tank respirators, or diaphragm pacing because obstructive apnea may be induced in these patients during sleep. Nasal or lipseal PPV may also be tried. Some older children may not require a tracheostomy for PPV, NPV, or diaphragm pacing, but many will when there is severe bulbar muscle dysfunction or lung disease.

PPV Via Tracheostomy PPV is the usual method of assisted ventilation in infants and small children.127,135,136,182 Positive pressure 328S

ventilators designed for home use are relatively portable and are the most common method of providing assisted ventilation for infants and children in the home.2,105,127,178,182-185 Portable positive pressure ventilators are not designed to be as technologically sophisticated or as versatile as larger hospital console ventilators, however. Consequently, when infants and children acquire a superimposed respiratory infection, portable ventilators may not be capable of adequately ventilating the child, and more intensive monitoring and hospitalization may be required.127,128 Further, portable ventilators are not designed to operate within certain limits (eg, tidal volume ,50 to 100 mL). Thus, portable ventilators may not be suitable for very small infants (,6 kg) with dynamic pathophysiology (changing impedance).

Children who are ventilated from infancy may develop chronic pulmonary disease126,134,186 of variable severity but generally are characterized by reactive airway disease. It is not known whether pulmonary disease develops because of the tracheostomy and mechanical ventilation, or whether these patients might actually have worse pulmonary disease if they had not received mechanical ventilation. Pulmonary disease often improves at 5 to 10 years of age or during adolescence, but the lungs may not be completely normal.134 A disadvantage of positive pressure ventilators in some patients is that a tracheostomy is required for ventilator access to the patient. Most ventilator-assisted infants and small children are subject to frequent nonbacterial respiratory tract infections, which often require assisted ventilation with higher rates and/or pressures. Thus, the tracheostomy provides ready access to the airway for hospital ventilators without the need for endotracheal intubation.2 Nevertheless, a tracheostomy increases the complexity and cost of home-care programs, increases the need for surveillance, increases risks of complications, and interferes with speech, nutrition, and development (see the section on tracheostomy tubes).

Tidal Volume: The majority of commercially available portable positive pressure ventilators for use with tracheotomized patients are volume-targeted preset ventilators (see also chapter 5). In traditional hospital practice, the tidal volume of 10 to 15 mL/kg delivered to the patient is used for mechanically assisted ventilation in infants and children. However, ventilator-assisted children generally have uncuffed tracheostomies, and a portion of the tidal volume delivered by the ventilator escapes in the leak around the tracheostomy. In some older children and adolescents, this leak is relatively constant, and a higher tidal volume setting can be used to compensate for the leak so that adequate ventilation can be achieved at home.

Higher tidal volumes also help the patient maintain speech. This tidal volume setting must be derived empirically and is much higher than the generally desired tidal volume delivered to the patient of 10 to 15 mL/kg. There is no way to predict the portion of a ventilator breath that escapes through the leak. In infants and smaller children, the tracheostomy leak is relatively large and variable. This leak may be many times as large as the desired delivered tidal volume, but it can usually be compensated for by a constant tidal volume setting.187 If not, the tracheostomy Mechanical Ventilation Beyond the Intensive Care Unit

leak can be compensated for by using the ventilator in a pressure plateau modality;127,128,188 alternatively, partially inflated cuffed tracheostomy tubes may be used.

Pop-off Valves: Some commercially available portable positive pressure ventilators have a high-pressure pop-off valve that is separate from the high-pressure alarm. The pop-off is adjusted down to the desired Ppeak. A very large tidal volume setting is dialed in, and the ventilator then functions as a time-cycled, pressure-limited ventilator. With the use of a pressure-limiting pop-off valve, the pressure limit is maintained, or plateaued, until the entire tidal volume is delivered through the machine. Excess volume escapes to the room rather than to the patient. If there is a large tracheostomy leak one moment, a larger portion of the tidal volume will be delivered through the ventilator into the airway, but the lungs will be inflated to the desired Ppeak. If there is a small tracheostomy leak the next moment, a lesser portion of the tidal volume will be delivered through the ventilator into the airway, but the lungs will still be inflated to the desired Ppeak.188 Given a constant pressure-volume relationship of the lungs in a child, the lungs will be inflated to the same tidal volume on each breath when the same Ppeak is achieved. This technique is effective in home ventilation of infants and small children and allows them to be ventilated successfully without use of PEEP, continuous flow, or cuffed tracheostomy tubes.145,150,158,188 It is also useful in older children or adolescents who have large or variable tracheostomy leaks.188

Recommendation: Users of commercially available positive pressure home care ventilators must take into consideration device specifications that may limit application with smaller children and infants.

Recommendation: Pressure plateau ventilation may be advisable when a variable tracheostomy leak cannot be managed by volume preset ventilation.

PPV Via Nasal Mask PPV via nasal mask can be used in some older children.

However, for children requiring full-time ventilation, it is cumbersome. Mouthpiece PPV pneumobelt and GPB should be considered. Pressure plateau ventilation is useful with a nasal mask, although volume-targeted ventilation also is effective. However, as already noted, infants and young children may not tolerate nasal masks.

Nasal mask ventilation has been used as a bridge to tracheostomy ventilation in children with progressive neuromuscular disorders, but this intermediate step is often unnecessary. Nasal mask ventilation is not usually recommended for use outside the ICU in hospitals because the airway is not secure. In general, there is not as much experience with nasal mask ventilation in small children as there is in adults, although with increasing use by pediatricians, this technique may increase in popularity. At

present, nasal mask ventilation in young children must be considered an investigational technique for research and/or use only by experienced centers.180 Further, to our knowledge, there are no published reports on the use of this technique in small children, and there are no generally accepted guidelines.

Recommendation: More clinical research with nasal mask ventilation in small children is needed before the technique can be more widely recommended. Use should be guided by outcome-based evidence.

NPV Via Chest Shell (Cuirass) or Wrap Ventilators The major benefit of this technique is that it can provide effective ventilation; however, because of the different upper airway anatomy in infants and young children, airway occlusion can occur when breaths are generated by a negative pressure ventilator during sleep,122 and thus infants and young children often require a tracheostomy when using a negative pressure ventilator. Therefore, this technique offers little advantage over PPV in the infant or young child. In addition, chest shell and wrap ventilators are not useful in children who require higher ventilator rates, tidal volumes, or distending pressures, as is the case with many cardiopulmonary disorders, because they are less powerful and versatile than portable positive pressure ventilators. Negative pressure chest shell ventilators are also not as portable as electronic positive pressure ventilators, nor are battery-operated models currently available.

Chest shells should be closely fitted in order to avoid large leaks and provide adequate ventilation. (Large leaks dissipate the negative pressure so that little chest expansion can occur.) Currently, the smallest commercially available chest shells fit children of approximately 4 years of age, making this technique difficult for children under this age. In children with chest wall anomalies such as scoliosis, custom-made cuirass shells are required and can be fitted in the community by orthotists. There is an extensive experience with Duchenne muscular dystrophy, and custom-made chest shells have been designed even for neonates.189 All chest shells need to be changed and refitted as the child grows, and the adequacy of gas exchange produced by negative pressure chest shell ventilation needs to be checked frequently to assure that the chest shell fit and ventilator settings are optimal. The problem of chest shell fit can be avoided by using a wrap ventilator.

Although not useful for infants or most small children, these negative pressure techniques may be ideal for some older children with neuromuscular disorders and less rigorous ventilator requirements in whom a tracheostomy may be avoided. They may also be useful for some children with a relatively stable, though transient, respiratory failure, such as patients with Guillain-Barre´ syndrome. In addition, negative pressure techniques have been used as a bridge to PPV via tracheostomy, especially CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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in children with progressive neuromuscular diseases, and they should be considered as alternatives to other ventilation techniques in selected cases early in the progression of disease. This is especially true in neuromuscular conditions and skeletal deformities where early application may delay complications (cor pulmonale) and/or provide muscle rest to enhance daily activities. Negative pressure techniques should also be considered for postoperative ventilation of patients with neuromuscular weakness or skeletal deformity when tracheostomy is not required for other reasons (secretion management or upper airway obstruction).

NPV Via Tank Ventilator Body tank ventilators, which completely encase the body below the neck and often make young children fearful, can provide effective ventilation in older children or adolescents without the use of a tracheostomy, although older children and adolescents who might benefit from this technique can often be ventilated by the more portable, less confining chest shell or wrap ventilators or NPPV. Because of the disadvantages of immobility and restricted access to the patient, negative pressure tank ventilators are not often used in the home.

As with other negative pressure devices, infants and young children may develop upper airway occlusion during sleep and thus need a tracheostomy. Some clinicians have successfully combined nasal CPAP with a small negative pressure tank ventilator to prevent the upper airway obstruction, which is often the limiting factor in infants and young children, and thus avoid a tracheostomy.190,191 These small negative pressure ventilators, now available for infants, may also be useful for non-ICU care of some patients with acute respiratory failure, especially when caused by ventilatory muscle weakness.190 In older children who have progressive neuromuscular/ skeletal conditions and require prolonged support after major surgical intervention (eg, scoliosis surgery) following extubation, tank ventilators may be useful as an alternative to tracheostomy. The tank should also be offered as an option to tracheostomy early in the course of the disease.

Recommendation: NPV may be considered as a means to provide ventilatory support without tracheostomy in selected patients. This may avoid or delay the need for tracheostomy. Such uses must be based on selection criteria that are specific to the care setting and its capabilities.

Diaphragm Pacing In this technique, electrodes are surgically implanted around the intrathoracic phrenic nerves to generate breathing using the childâ&#x20AC;&#x2122;s own diaphragm as the respiratory pump.68,165,192-196 The technique is not useful for hospitalized patients with temporary respiratory failure, but it is useful for patients with central hypoventilation syndrome or high spinal cord (C-1 to C-2) injury without 330S

primary muscle or phrenic nerve damage.68,165,192-196 The phrenic nerve electrodes are connected to receivers implanted subcutaneously68,194,196 and are electrically stimulated transcutaneously from an external radio frequency transmitter. Pacer rate and electrical current can be controlled,196 which determines the respiratory frequency and size, respectively, of each breath. Effective ventilation can be generated using simultaneous bilateral diaphragm pacing in infants and children if the phrenic nerves and diaphragms are functional.68,165,195,196 In adults, unilateral or alternating side pacing may provide adequate ventilation; but young children require simultaneous bilateral pacing due to the paradoxic respiration that occurs with unilateral pacing. Because phrenic nerve stimulation requires intact phrenic conduction and diaphragmatic contractility, diaphragm pacing is contraindicated in patients with primary phrenic nerve damage or primary diaphragm myopathy.

Most children and adolescents (and all infants and young children) with diaphragm pacing require a tracheostomy or use of CPAP to prevent upper airway occlusion during sleep;68 a small number of older children and adolescents do not. One alternative is to discontinue diaphragm pacing, utilizing nasal PPV overnight. Advantages of the diaphragm pacer system are that it is small, light, and easily portable as well as battery operated.

However, the surgical technique is tricky, and use of the pacers, once implanted, requires some experience. Diaphragm pacing should generally be performed only in experienced centers where the required diagnostic and staff support are available for evaluation and adjustments.

Although diaphragm pacing may benefit select groups of children with primary central hypoventilation syndrome or high cervical spinal cord injury, those who benefit most are ambulatory children with primary central hypoventilation syndrome requiring full-time ventilatory support.165 During the daytime, these children are not tethered to a short length of ventilator tubing. They can carry the small battery-powered transmitter in a backpack and attend school or participate in other activities while receiving the ventilatory support they require. Further, the breathing in children with CCHS can be improved with exercise,197 so that in some patients, diaphragm pacer settings may not require changes with moderate levels of exercise.

Wheelchair-bound C-1 to C-2 quadriplegics can choose to use either a portable ventilator via tracheostomy or a diaphragm pacer transmitter while on their power wheelchair. In some centers with experience, such patients can also successfully use NPPV. Diaphragm pacing is still an option that some quadriplegics may chose in order to gain independence due to enhanced mobility the technique permits.

Recommendation: Diaphragm pacing should be managed by centers with experienced and dedicated interdisciplinary teams.

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Rocking Bed and Pneumobelt Rocking beds occasionally may be useful for patients in hospitals outside the ICU, but the technique is less likely to be useful in small children and is neither effective nor recommended for infants. With other modalities of home ventilation available, rocking beds are used infrequently.

However, although an inefficient form of ventilation, the rocking bed does serve to relieve body pressure in patients who are mobility limited.

Pneumobelts are a relatively ineffective form of ventilatory assistance for infants and small children. However, they can be useful for daytime support of older children to complement nocturnal NPPV or NPV at other times of the day or night.

Recommendation: A combination of ventilatory devices/techniques may be considered along with “free time” to give patients greater mobility and independence.

Ventilator Equipment and Use Because PPV via tracheostomy is the most frequently used technique in infants and young children, specific aspects related to pediatric patients (modes of ventilation, humidifiers, tracheostomy tubes, ventilator settings) are discussed in this section, particularly with reference to discharge to a home setting. Pediatric considerations concerning ventilator alarms, secondary ventilators, DME providers, oxygen, nutritional support, communication methods, and automobile transportation as well as caregivers, including the family, are then presented. (See also chapter 5, “Equipment and Resources for Care Beyond the ICU.”)

Modes of Ventilation Different types of patients may optimally benefit from different modes of PPV. Intermittent mandatory ventilation (IMV) or SIMV, popular modes on hospital ventilators used in the management of acute respiratory failure, require compressed air or another gas source that can generate large continuous gas flows. These systems are not portable, and thus are not generally desirable for use in long-term care facilities or at home. Because home ventilators do not have continuous gas flow, SIMV or IMV dialed in on a home ventilator is not the same as on a hospital ventilator with continuous gas flow. The child requiring long-term assisted ventilation should be weaned from PEEP and switched from IMV or SIMV to a control or assist mode prior to discharge home.2,127 Most infants and young children can be ventilated in a control or assist/control ventilator mode. If the ventilator is set with a pressure plateau, then excessive Ppeak will not occur if a ventilator-controlled breath coincides with spontaneous exhalation.188 The ventilator circuit should include a one-way valve placed proximal to a pass-over

humidifier so that the child may breathe spontaneously with minimal effort. Spontaneous inspiration may also occur through the exhalation valve. The exhalation valve should be placed as close to the tracheostomy as feasible to minimize dead space during spontaneous breathing.

In the ICU, some infants and children with neuromuscular disease may require PEEP to prevent atelectasis. A higher rate and/or Ppeak can be used in an attempt to avoid the use of PEEP at home.2,127-129 Few children need PEEP to maintain a stable respiratory status if higher ventilator rates are used. However, PEEP can be applied to all portable positive pressure ventilators by attaching either a disposable or interchangeable PEEP valve to the exhalation valve. If this is done, careful readjustment of the sensitivity is necessary to prevent excessive effort during ventilator triggering (set sensitivity 1 cm H2O below PEEP level). Whenever PEEP is applied to volume-targeted home care ventilators, the effort required to draw gas spontaneously from outside the circuit is increased.

Recommendation: Modes of ventilation should be limited in number and simple to implement.

Some modes common in ICU environments may not be appropriate and may be logistically more difficult to use outside the ICU.

Humidification Ventilator gas must be humidified for infants and children. However, different children appear to require different degrees of humidification. For most infants and small children, the desired temperature range is 26° to 29°C (80° to 85°F).2 Condenser humidifiers (humidity moisture exchangers) are not as effective for infants and small children as heated humidifiers, but they can be used for travel or during wakefulness. An in-line thermometer may be placed in the circuit to monitor humidifier temperature. Placement of a one-way valve in the breathing circuit proximal to a pass-over humidifier decreases patient effort during spontaneous breathing. Spontaneous breathing can also occur via the exhalation valve, although the patient’s negative inspiratory efforts may partially close the exhalation valve. The circuit is usually connected to the tracheostomy with a swivel adapter. Dead space tubing between the exhalation valve and tracheostomy should be minimized to avoid CO2 retention.

Tracheostomy Tubes As already noted, a tracheostomy is indicated for access to the airway in small children using positive pressure ventilators in the home. It may also be required for infants and young children using NPV (chest shell or tank ventilators) and diaphragm pacing because obstructive apnea may be induced in these patients during sleep. Some older children may not require a tracheostomy for PPV, NPV, or diaphragm pacing, but many will.

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Disposable plastic tracheostomy tubes under size 4 do not have an inner cannula and thus should be changed on a regular basis at home. Most children require tracheostomy tube changes in the range of weekly to monthly.

However, to our knowledge, there is no documented evidence regarding the proper frequency of tracheostomy changes in the home, and frequency should depend on individual factors. For example, changes may need to be more frequent during respiratory tract infections or in patients with increased tracheal secretions.

All caregivers, whether they are performing routine tracheostomy tube changes or not, should be taught the technique in the event that an emergency or unexpected tracheostomy tube change is required. A second sterile tracheostomy tube must always be available in case of accidental decannulation. In addition, an endotracheal tube with an external diameter less than that of the tracheostomy tube is advisable for an emergency when the tracheostomy tube cannot be easily replaced.

Small tracheostomy tubes generally should be used.

This prevents tracheomalacia, and a large leak around the tracheostomy facilitates speech. A small tracheostomy may require increased Ppeak, but the advantages to the child outweigh the extra pressure required to overcome the resistance of the tracheostomy tube.

Recommendation: All caregivers must demonstrate proficiency in routine and emergency tracheostomy management.

Ventilator Settings For many children going home with long-term ventilatory support, weaning is not a realistic goal. To optimize quality of life, these children must have energy available for other physical activities. Thus, ventilators are adjusted to meet the ventilatory demands of these children completely, so as to leave much of their energy available for other activities.2,127 For children without significant pulmonary disease, ventilators are adjusted to provide an end-tidal Pco2 of 30 to 35 mm Hg and SaO2 (pulse oximetry) .95% (optimal ventilation).127-129,198 For children with pulmonary disease, these low Pco2 values may not be achievable, and supplemental oxygen may be required, in addition to mechanical ventilation, to achieve adequate oxygenation.

For the child requiring long-term assisted ventilation, mobility and quality of life are maximized if the child can breathe unassisted for portions of the day (ie, develop free time).105,127-129 Even if a child cannot be weaned completely from assisted ventilation, nocturnal ventilation preserves waking quality of life and allows the ventilatory muscles a recovery period during the time when the patient is at highest risk for hypoventilation due to the depression of neurologic control of breathing, which occurs during sleep.150,181 The weaning of daytime assisted ventilation may be accomplished via T-piece or tracheostomy weaning.199 From patient, parent, and caregiver 332S

standpoints, it is preferable to have a child who can be away from a ventilator for several hours a day than a child who must continue to receive mechanical ventilatory assistance at all times.2,105,127,128 For some children, weaning by reducing the ventilator rate may also be successful.

The weaning technique, like other aspects of home mechanical ventilation, must be individualized, but chronic hypercapnia must not be tolerated.

Prior to discharge, the patient’s respiratory status must be stable on the actual ventilator and circuits the child will use in the home, preferably for at least several days. This assures that the ventilator performs well and is a good match for the patient, and gives time to make any adjustments needed to achieve the desired gas exchange and for caregiver education.2,38,127-129 It must be emphasized that settings on a home ventilator do not provide the same ventilation in the child as the same settings on a hospital ventilator, and that the efficacy of home equipment must be evaluated in each child prior to discharge to alternate sites.38,127-129 Invariably, ventilator settings will need to be increased on the home ventilator to achieve the level of gas exchange achieved on a hospital ventilator.

PaCO2 should be adjusted slightly lower than physiologic PaCO2 (ie, 30 to 35 mm Hg) to provide a margin of safety and eliminate subjective feelings of dyspnea. In the home, ventilator settings cannot be changed frequently to maintain perfect blood gas values. Thus, settings should not be changed in response to minor variations in blood gas values, but only to correct persistent trends or major abnormalities.

Once the child is home, and as the child grows, ventilator settings must be evaluated to assure adequate gas exchange (pulse oximetry, capnography, transcutaneous Po2 and Pco2) on a regular basis. Although the optimal frequency for these evaluations has not been determined, these evaluations generally should be performed more frequently in infants and small children with rapid growth, but less frequently in older children with slower growth.127,128 Intervals that have been used, but that must be individualized for each patient because some children may benefit from more or less frequent evaluations, are as follows: first year of life—ventilator settings should be checked every 4 to 6 months;127,128 second through fourth years of life—ventilator settings should be checked every 4 to 8 months; after the fourth year of life—ventilator settings should be checked every 6 to 12 months; and following any change in the respiratory system (such as severe infection or hospitalization)— ventilator settings should be checked and readjusted.2 Polysomnogram evaluations may be performed during an overnight hospital admission so that continuous noninvasive studies of oxygenation (pulse oximetry) and ventilation (capnography) can be performed during sleep.

For patients with neuromuscular disease, evaluations may be performed using SaO2 monitoring at home. However, sleep studies during daytime naps may also be adequate for the evaluation of ventilator settings if the child’s clinical course is reasonably stable. Studies using capnography and pulse oximetry in the home may also provide accurate reflections of gas exchange. Further, Mechanical Ventilation Beyond the Intensive Care Unit

sleep studies may be used to predict the success of weaning during sleep when weaning schedules are advancing in the home. The home setting is a logical place to accomplish weaning because mechanical support is matched with daily activity and schedules.

Some children may be able to be weaned from mechanical assisted ventilation after months to years. Children with BPD, in which the relative pulmonary disease improves with time, due to the growth and development of normal lung, represent the most frequent examples. Children with other pulmonary diseases as well as with neuromuscular diseases may also be weaned for the same reason (growth and development of lung and chest wall).

Weaning can be performed at home with careful attention to the management plan, including observation, communication, and coordination. Such management often requires repeated clinical and physiologic assessment of the adequacy of ventilation by polysomnography. Home recording techniques that monitor oxygenation and CO2 noninvasively may also be useful. Information may be communicated traditionally (telephone/FAX) or interactively (1997, telemedicine).200

Recommendation: Ventilator settings must be evaluated and adjusted on an individual case basis with clinical and physiologic monitoring.

This may be accomplished in a designated center or at home.

Ventilator Alarms The current state of the art is to use positive pressure ventilators with low pressure or disconnect alarms that sound if minimally acceptable pressure levels are not being achieved. Most commercially available portable positive pressure ventilators have a built-in low-pressure alarm. To set the alarm, disconnect the ventilator from the tracheostomy tube and note the Ppeak developed during a breath when the circuit is connected to a patient. The low-pressure alarm threshold should be set 5 cm H2O below that value. Then disconnect the circuit from the tracheostomy tube to be certain the alarm functions at the level set. Many portable positive pressure ventilators also have alarms for high pressure, incorrect timing, and power failure. Patients who become completely apneic without ventilatory support should, in addition, have a chest wall impedance apnea and bradycardia monitor. Apnea-bradycardia monitors are also desirable for infants and children with small tracheostomy tubes. In the event of accidental decannulation, the resistance in the small tube itself can be enough to require the ventilator to develop a Ppeak greater than the low-pressure alarm threshold. Thus, the low-pressure (disconnect) alarm may not sound, and the apnea-bradycardia monitor serves as a lifesaving backup.

However, no alarm system can replace a well-prepared, alert, and trained caregiver.

Recommendation: Alarm systems can be justified as a medical necessity on an individual case basis. Recreating the ICU in the home setting is not desirable.

Secondary or Backup Ventilators Children who require home mechanical ventilation should generally have a secondary ventilator available.

Compared with adults, children have less respiratory reserve and consequently decompensate more quickly if the home ventilator fails. Thus, for children who have ,4 consecutive hours of free time from the ventilator, backup ventilators are necessary because these children cannot tolerate the length of time that may be required for the DME provider to bring a functioning ventilator to the patient. Backup ventilators are also necessary for children who live long distances from medical care or from their home DME providers.

Both the primary and secondary ventilator must be routinely maintained and evaluated for proper functioning, and both ventilators should be used alternatively to be sure that both remain functional.

Recommendation: A second ventilator in the home for pediatric patients must be justified by medical necessity based on individual case requirements.

DME Provider All mechanical equipment is subject to breakage, malfunction, and decalibration. Routine and emergency service must be available. Whether equipment is rented, leased, or purchased, payment should be preapproved in advance of discharge for equipment surveillance, tracking of failures, maintenance, and emergency repairs. DME providers/home-care equipment vendors should make home visits at least once every month to perform preventive maintenance and checks on ventilator function, and to reduce â&#x20AC;&#x153;emergencyâ&#x20AC;? calls due to ventilator malfunction.

On each visit, filters should be checked on positive pressure ventilators. Tidal volume, rate, oxygen concentration, pressures, and alarms should be calibrated and their function checked. Overall function of the ventilator and the patient should also be assessed.

Home ventilator failures are frequently due to caregiver misuse, tampering, misinformation, stress, or changes in the patientâ&#x20AC;&#x2122;s medical condition.179 The importance of thorough caregiver education cannot be overemphasized.

As children grow, ventilator requirements change. Ventilator requirements can be best assessed and adjustments made in the home under daily living conditions by skilled RCPs, together with family members. Under some circumstances, this reassessment requires a return to a more expensive institutional setting for medical, technical, or CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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social reasons. The RCPs, most often supplied by the DME provider, should be skilled in the clinical assessment of the childâ&#x20AC;&#x2122;s respiratory status. These home visits also provide an opportunity to discuss concerns of the parents or caregivers and to provide education about the equipment, including safety issues and proper cleaning procedures.

Recommendation: Home DME must have regular maintenance and available emergency service.

Recommendation: Family members and other caregivers must receive full training and education to prepare them appropriately in the use of home medical devices.

Recommendation: Skilled, experienced RCPs should make regular clinical assessments of patients receiving mechanical ventilation at home.

Oxygen Therapy The goal of home oxygen therapy is to maintain a sufficient arterial oxygen tension (PaO2) to prevent cardiovascular or CNS complications of hypoxia while optimizing the childâ&#x20AC;&#x2122;s lifestyle and rehabilitative potential.

This generally requires a PaO2 of .65 mm Hg (.95% SaO2 of hemoglobin) at sea level. Because PaO2 varies considerably with sleep, feeding, and physical activity, especially in infants and small children, continuous noninvasive monitoring techniques (transcutaneous oxygen electrode, pulse oximeter) should be used to assess the adequacy of oxygenation during periods of sleep, wakefulness, feeding, and physical activity. Pulse oximetry in the home may be necessary to optimize oxygenation in some patients, and caregivers should be carefully trained in its use because of the frequency of artifactual readings due to movement and extrinsic light. Some patients require increased supplemental oxygen during sleep; others may require less supplemental oxygen during assisted ventilation than during spontaneous breathing; many require increased supplemental oxygen during increased daytime activity. Supplemental oxygen is not a replacement for assisted ventilation in patients who hypoventilate.

Recommendation: Oxygen use at home must be justified on the basis of medical necessity, as determined by appropriate physiologic monitoring. CO2 should be minimized first by ventilator use before considering oxygen therapy, especially for patients with neuromuscular disorders.

Nutritional Support For optimal support, children who receive long-term mechanical ventilation should receive optimal nutrition.

This is critical for growth and development of the lungs and chest wall and may make possible the eventual withdrawal from mechanical ventilation.

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Infants and children with a tracheostomy who have intact swallowing coordination are able to eat and drink while being ventilated by a positive pressure ventilator.

Patients being ventilated with negative pressure ventilators or diaphragm pacing are at risk for aspiration if they attempt to eat or drink while they are being ventilated.

Most children receiving NPV or diaphragm pacing can breathe spontaneously during eating. When simultaneous eating and NPV or diaphragm pacing are necessary, patients must be trained to coordinate eating and breathing. Successful training usually can be accomplished only in older children or adolescents.

Many infants and children who require long-term ventilatory support also have discoordination of swallowing mechanisms. Nearly all ventilator-dependent infants and children should have adequacy of swallowing evaluated.

Those patients with discoordinated swallowing, and young children receiving full-time NPV, may benefit from feeding training by speech/language pathologists or occupational therapists. Some will require feeding by gastrostomy. Many of these patients have associated gastroesophageal reflux, which may require surgical correction at the time a gastrostomy tube is placed.

Recommendation: Swallowing function should be evaluated to assess pulmonary aspiration risks and to improve oral nutrition for children requiring long-term mechanical ventilation.

Communication Methods Infants and children with a tracheostomy experience difficulty with speech and often have a delay in speech development. When there is a sufficient leak around the tracheostomy tube, most children can learn to speak by occluding the tracheostomy during exhalation. For patients requiring ventilation only during sleep, the tracheostomy tube can sometimes be plugged during the day, permitting phonation by exhalation around the tube through the larynx. Alternatively, one-way speaking valves permit inspiration through the tracheostomy tube but direct exhaled air through the larynx to permit phonation, and their use may improve speech development in some children. The speaking valve allows nearly normal speech in children who can be off the ventilator. Although most children have enough air during mechanically assisted ventilation and do not need a speaking valve, some children gain increased power and volume in their voices using this valve with assisted ventilation. The speaking valve should be removed during sleep. However, one-way speaking valves are poorly tolerated by some younger children, and their use must be individualized. Evaluation by a speech/language pathologist is useful for nearly all children with tracheostomies, especially for those using one-way speaking valves. For those patients who cannot phonate, an audible alarm system is mandatory so the child can summon help in the event of an emergency.

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Recommendation: Communication function should be evaluated in all children with tracheostomies. This is especially necessary for those using special speaking devices.

Automobile Transportation Child safety restraints are required for children in motor vehicles. However, some technology-dependent children may be unable to use standard commercially available restraints. Further, there are no uniform methods for securely fastening the respiratory equipment, which could turn into dangerous projectiles during sudden stops or in accidents. A survey of methods of transporting technology-dependent children and their equipment in 52 ventilator-assisted children found that the ventilatorassisted children were restrained as safely as their healthy siblings (control subjects) during automobile transportation.201 However, the survey also revealed that over two thirds of these ventilator-assisted children transported heavy medical equipment inside the vehicle passenger compartment and that nearly half did not securely fasten this equipment. Thus, ventilator-assisted children may be at increased risk for injury or death from motor vehicle accidents, primarily due to equipment that is not securely fastened.201 Recommendation: Patient and caregiver education and planning for safe transportation practices should be a part of discharge planning for all ventilator-assisted children.

Caregivers Prior to discharge from the hospital, the family must become familiar with all aspects of the child’s care.2 It is difficult to meet psychosocial and developmental needs of ventilator-assisted children in the hospital,173 but it also can be difficult for families to meet these and other needs of their ventilator-assisted children in the home. Family members must demonstrate competency in equipment operation, tracheostomy care (including changing the tracheostomy tube), pulmonary physiotherapy, administration of medications (including aerosols), and cardiopulmonary resuscitation. Family members also need to become adept at recognizing signs of respiratory compromise.

Most families become skilled in these tasks, yet it is not realistic to expect that they can provide care for their ventilator-assisted infant or young child in the home without support. Parents or primary caregivers need rest so that they remain alert. They need respite care so they can work outside the home, which is especially necessary when employment is the source of medical care funding (health-care insurance).

They also need assistance, which may be provided by nurses, nonprofessional aides, extended family members, or self-help groups, in caring for the ventilator-assisted infant or young

child at home. The community resources available to each family differ, and these must be balanced against the stability of the ventilator-assisted child. Optimally, individualized arrangements for support need to occur for each ventilatorassisted child.

Surveillance Issues: All caregivers should be constantly aware of the child’s respiratory status. Because ventilatorassisted infants and children have very little respiratory reserve, they are more likely to acquire viral respiratory tract infections than adults. Consequently, these children can have rapid changes in their clinical condition that affect the adequacy of both spontaneous and assisted ventilation. Thus, before the child is discharged from the hospital, each caregiver, nurse, or aide who will care for the child at home should not only receive in-service training on the care of the child, preferably from the child’s home care discharge team, but also on assessing color change, chest excursion, respiratory distress, tachycardia, tachypnea, diaphoresis, edema, lethargy, and tolerance for spontaneous ventilation off the ventilator.

Changes in these parameters may be clinical signs that ventilation is inadequate, and should be checked by noninvasive blood gas monitoring (pulse oximetry, capnography, transcutaneous Po2 and Pco2). A recent study of 56 home-care patients found the incidence of death and severe hypoxic encephalopathy resulting from airway accidents in the home to be 2.3 per 10,000 patient-days, or nine times greater than in the ICU.174 The authors of the study also indicated that their more recent experience suggested reduction of these complications with the use of pulse oximetry in the home. Continued evaluation of the child’s clinical condition can be provided by a mix of well-trained, well-prepared caregivers that include family members, nurses, registered nurses, licensed practical nurses, certified nursing assistants, and appropriately trained and supervised personal attendants.

Recommendation: Surveillance should be provided by a mix of potential caregivers who must be well trained and prepared.

Stress Issues: Important sources of stress on families caring for ventilator-assisted children at home include both financial and lifestyle issues.185,202,203 One study found that after the ventilator-assisted child first came home, it took .4 months before caregivers went out together and left the ventilator-assisted child in another person’s care.204 Other studies found that healthy siblings in the families of these children felt ignored and had behavior problems.203,205 In addition, many caregivers are unable to pursue career choices, education, or job changes because of care requirements for their ventilator-assisted children.203,204 Furthermore, they often cannot change employers because new employer medical health-care benefits are likely not to cover the ventilator-assisted child’s preexisting medical condition.203,205 Caregivers of ventilator-assisted children at home may experience significant distress.206 Some of this distress arises because of their perceptions of unmet CHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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demands from health-care professionals.203,207 Increased distress, as well as increased marital discord and decreased family cohesion, accompanies poor coping abilities in many caregivers,208 with no differences found between caregivers with or without in-home nursing.138 The distress is inversely related to caregiver coping resources and to the length of time the ventilator-assisted child has been at home.195,206 Thus, it is possible that as ventilator-assisted children are longer at home, their caregivers experience less distress because they have more time to develop coping strategies.206 Furthermore, reducing marital discord and improving family support may improve coping abilities, which may re-duce distress.203,206,208 Nevertheless, the stress of caring for a chronically ill child at home causes marital discord in most families, including families of ventilator-assisted children,203,209 although families of ventilator-assisted children experience relatively few divorces and separations.205,209 Despite the difficulties, nearly all caregivers see home care as less stressful than separation from the ventilatorassisted children when in the hospital.203,205 Nearly all also believe that they provide better medical care for their

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ventilator-assisted children at home than they received in the hospital,207 and that having their child at home is predominantly a positive experience.204 The stresses that caregivers experience nevertheless require health professionals to provide strong psychosocial support to families, including access to mental health professionals for both the ventilator-assisted children and the caregivers. Respite care is also extremely important and ultimately cost saving because it prevents caregiver burn-out and the need for rehospitalization. Self-help groups should be encouraged as helpful to many caregivers because they provide support for families that professionals cannot give and because they provide a perspective that can be shared only with those who have directly experienced these issues.

Recommendation: Supplemental and respite care support for families should be considered. This may be provided by professionals, nonprofessionals, and self-help groups.

Mechanical Ventilation Beyond the Intensive Care Unit

Chapter 7. Ethical Issues Informed Decision Making and Advance Directives Today’s technical ability to extend life using mechanical ventilation often leads to the question of whether it should be done rather than the question of whether it can be done. Patients should have a major role in answering the question. They should be encouraged to participate in health-care decision making and should understand their health-care rights. The professional staff should provide sufficient information to allow the patient and his or her family to understand the medical condition and prognosis, options for care, and the plan of care advised by the physician and multidisciplinary team. This information should include the benefits, risks, and burdens involved in long-term mechanical ventilation. Those patients at high risk for respiratory failure (which include those with chronic progressive lung diseases such as COPD and cystic fibrosis, neuromuscular disease such as amyotrophic lateral sclerosis [ALS], and musculoskeletal disease such as kyphoscoliosis), should thoroughly discuss the potential need for mechanical ventilation carefully and repeatedly with an experienced physician prior to initiation of ventilatory assistance.

The professional staff should seek to understand the patient’s health-care wishes and values fully and clarify any advance directives concerning invasive and noninvasive mechanical ventilation. Failure to review and understand patient wishes concerning mechanical ventilation leads to inappropriate use of long-term mechanical ventilation. For example, some people may inappropriately avoid longterm mechanical ventilation due to lack of an opportunity to review and discuss the options. Others who want to avoid invasive ventilatory assistance may find themselves endotracheally intubated as a consequence of emergency and critical care, if they have not previously discussed their desires with health-care providers.

Health-care professionals should honor the informed patient’s assessment of his or her preferences regarding long-term mechanical ventilation and quality of life. Some patients clearly prefer mechanical ventilation compared with alternatives such as death. For example, many patients with ALS and other neuromuscular disorders, despite severe physical limitations, elect long-term ventilation, evaluate their quality of life as satisfactory, and would choose ventilation again.90,95,210 Studies have shown that ALS patients who cannot be weaned from invasive mechanical ventilation often feel that their life quality is satisfactory, even in situations that seem inappropriate and burdensome, and are reluctant to stop the ventilator.211,212 In addition, the increasing use of NIV in patients with respiratory insufficiency due to neuromuscular disease and COPD patients with acute exacerbations has substantially changed the perceptions of many patients and providers regarding mechanical ventilation. Many patients who decline invasive mechanical ventilation are willing to undergo a trial of NIV. Discussion of the issues involved between patient and physician (or other health-care professional), and between

patient and family members, is essential. Patient wishes related to cardiopulmonary resuscitation, intubation, reintubation, limits of care, or aggressiveness of care should be discussed and recorded. Patients should also be asked to identify a surrogate (proxy) decision maker to represent their wishes in case they become unable to express themselves, and these wishes should be reviewed from time to time and recorded. Using a legal document, such as the Durable Power of Attorney for Healthcare, should be encouraged. However, a patient cannot legally be required to identify advance directives or a surrogate decision maker.

Role of Family and Friends The professional staff should also seek to understand the point of view of family or friends fully. Family members or friends should understand the medical confidentiality and decision-making issues that are controlled by the patient as well as the physician’s responsibility to identify the medically appropriate care options and advise a care plan. Family members or friends should understand that they can make decisions regarding issues that will directly affect their lives, such as participating as caregivers in the home, but that they should not be coerced or manipulated. A family member or friend who decides to be a caregiver for a disabled ventilator-dependent person at home may be taking on an extraordinary responsibility and burden.213 When this is not a fully informed and freely made decision, the likelihood of frustration, anger, interpersonal problems, and caregiver burnout is increased.

Withholding and Withdrawal of Mechanical Ventilation The patient should understand that he or she can refuse or ask to be withdrawn from any life-sustaining therapy advised by the physician, even when such requests result in the patient’s death.214,215 This right extends to withdrawing mechanical ventilation. To make an informed decision, the patient must have health-care decisionmaking capacity, a durable decision, and no evidence of acute depression. The physician must review the medically appropriate options with the patient, educate the patient to allow an informed choice, and provide medically appropriate care. Consultations, such as with a hospital’s bioethics committee, may be considered for difficult care problems or persisting ethical dilemmas.

Resource Limitations Limited, fragmented, or nonexistent resources to support long-term care for the ventilator-dependent patient may limit the options available. At the extreme, some people decide to withhold or withdraw from long-term mechanical ventilation when resources are not available, when they would be a major burden for their family, or when they would have to be in an institutional care setting.

Without adequate resources, patients may lack services for personal assistance, equipment to assure mobility, specialCHEST / 113 / 5 / MAY, 1998 SUPPLEMENT

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ized forms of transportation, and special communication devices. A recent tendency to consider these personal and social assistance needs as medical needs has made services more expensive because they are delivered by health-care professionals. As these costs are shifted to medical-care programs, home-care costs rise and often become more expensive than institutional alternatives for the physically limited VAI. Thus, the goal of returning VAIs to the least restrictive environment is often not sufficiently supported by community and social services. These resource gaps result in great anguish, frustration, and limitation of choice for many people who would otherwise be appropriate for home mechanical ventilation.

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Recommendation: Patients have the right to choose whether to institute and continue or to withhold and withdraw long-term ventilatory assistance. The physician is responsible for educating the patient and family so an informed decision can be made. The use of advance directives such as the Durable Power of Attorney for Healthcare should be encouraged.

ACKNOWLEDGMENTS: The panel wishes to thank Barbara L. Mathesius, Coordinator, ACCP Division of Health and Science Policy, for her assistance in the preparation of this consensus statement.

Mechanical Ventilation Beyond the Intensive Care Unit

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