A Publication of Hospice Compassus
“Patients expect to be treated with respect and to have an outcome that’s consistent with what they have defined.” Sen. William H. Frist, M.D. chairman Hospice Compassus Scientific Advisory Council
Doctors in our House
articles, stories, and quotes
from our dedicated colleagues and compassionate communities
hysicians play a vital role in every patient’s and family’s hospice journey. It is a physician’s duty to understand the progression of
every patient’s illness and to foster the conversations necessary to address and cope with the end-of-life process as it comes into view; and it is a physician who leads the care team, assuring that each patient receives the comforting support that fulfills the hospice promise all of us make to those we serve. Physicians, however, also have other critical roles to play in hospice. We look to them to lead the way in breaking down the social, cultural, economic, and bureaucratic barriers that keep as many as 50% of those who are eligible for hospice from ever receiving its benefits. We look to them to identify eligible patients earlier in their disease progression, enabling those who qualify to receive hospice benefits not just for their
We’d love to hear what you think about our Company and
brief final hours, but for the full measure of time they deserve. We also
our Colleagues. Please contact
look to physicians to advocate for hospice in our communities and in
us on our website at
our national forums, where so many different facets of our healthcare
system compete for increasingly dear resources. In this edition of Everyday Compassion, several physicians join with the patients, family members, volunteers, chaplains, social workers, nurses, and others who contribute their stories. I hope you enjoy what they have to share, and I invite you to let us hear your reactions.
Jim Deal Chief Executive Officer
A Quilt for Shirley . . . . . . . . . . . . . . . . . . . . . . . . . 2 Serving with Heartfelt Compassion . . . . . . . . . . . . 2 It’s Never Too Late . . . . . . . . . . . . . . . . . . . . . . . . . 3 Payson’s Shining Example for Health . . . . . . . . . . 3 Hospice Compassus Launches Industry Quality-Care Initiative . . . . . . . . . . . . . . . . . . . . . 4 Top Performer of the Year . . . . . . . . . . . . . . . . . . . . 5 Roses Are Red . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 The Doctor in Our House . . . . . . . . . . . . . . . . . . 21 My Time with Tony . . . . . . . . . . . . . . . . . . . . . . . . 22 Life after Death, Part II . . . . . . . . . . . . . . . . . . . . . 23 Celebrating Compassion Every Day . . . . . . . . . . . . 26 Welcome! . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 In Memoriam . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 Hospice Compassus Locations . . . . . . . . . . . . . . . 29
Doctors in Our House
With Our Hearts and Our Knowledge . . . . . . . . . . 6 Creating Access and Breaking Barriers . . . . . . . . . . 6 Team Leaders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Hospice: “Original Medicine” . . . . . . . . . . . . . . . . . 9 Celebrating the Human Condition . . . . . . . . . . . 10 Back to the Start . . . . . . . . . . . . . . . . . . . . . . . . . 12 Many Minds, One Goal . . . . . . . . . . . . . . . . . . . . . 14 How Doctors Die . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Not All Pain Is Physical . . . . . . . . . . . . . . . . . . . . . 20
Ask the Experts . . . . . . . . . . . . . . . Back cover Everyday Compassion is published periodically by Hospice Compassus. Please address any comments or questions to: Editor, Everyday Compassion, Hospice Compassus, 12 Cadillac Drive, Suite 360, Brentwood, TN, 37027.
PUBLISHER: Hospice Compassus EDITOR: Brooke Legnon, Marketing Director ASSISTANT EDITOR: Jan Shaffer, Senior Human Resources Consultant CONTRIBUTORS: Dale Willis, Nicole Altamura, Teresa Severs, Roberta Bayles, Melanie Kilgore-Hill, Roberto Lopez-Santini, M.D., Kermit E. White, M.D., Paul Tatum, M.D., Louis J. Lux, M.D., Lisa Singleton, Kurt Merkelz, M.D., Vicki Brown, Ken Murray, M.D., Carol Coffin, Burt M. Bujard, M.D., Linda Tillery, Tom R. Van Sickle, Judy Ermold, Margi Carlson, Jan Shaffer, Julia Logan-Mayes. CREATIVE: Tallgrass Studios, Inc. Copyright © 2012 Hospice Compassus. All rights reserved. No part of this periodical may be reproduced in any manner without the prior written consent of Hospice Compassus.
A Quilt for Shirley S
hirley was only eleven months old when her mother died. One of the few things she received from her mother was an assortment of handmade quilted square tops. As Shirley grew up, those fragments of quilted tops became her most prized possession – and among her only connections to the mother she never had a chance to know. Shirley intended to create a full-sized quilt from the pieces and fragments. But, never having learned how to quilt – and distracted by a never-ending list of other things to do – she relegated the collection to a closet. Sixty-nine years later, that collection of cherished quilt tops had faded into patches of dingy yellow, and Shirley was facing her own death; her diagnosis was cancer, and she had only weeks to live. As Shirley’s daughter, Cheryl, observed the hospice team – the nurse, aide, chaplain, social worker – provide comfort and care for her mother, she contemplated what she could do to bring a sense of peace and joy during her final days. Then she remembered a bit of unfinished business. In reply to an e-mail appeal, Angela Weithman, a volunteer with Hospice Compassus, stepped forward and said she could help. Wasting no time, she spent a good portion of that weekend piecing together the precious fragments of Shirley’s past. The following Wednesday, Cheryl stopped by the hospice office to pick up the finished product. When the full-sized quilt was unfolded and presented to her, Cheryl
Serving with Heartfelt Compassion
Shirley rests peacefully with her new quilt.
was stunned and silent. Speechless as she stared at the beautiful, yellow-stained quilt, tears came to her eyes. “This is more than I ever dreamed for,” she said. And off she went with the quilt, eager to present it to Shirley, knowing that it would light up her life. And it did. Shirley died just two weeks later. Compassionate colleagues and volunteers. Completing unfinished business. Peace. That’s what hospice is all about. – Dale Willis, Volunteer Coordinator Columbia /Macon, Missouri
Left: Shirley’s daughter, Cheryl, with the new quilt. Below: Angela Weithman is the Hospice Compassus volunteer who helped make it all happen.
Colleagues of Hospice Compassus use this approach every day when providing care and support to thousands of patients and their families. What would happen if we took this to a new level: Colleagues Serving Colleagues with Heartfelt Compassion? Compassus C.A.R.E.S. – Colleague Assistance and Relief in Emergency Situations– allows us to do just that. The program’s purpose is to grant financial assistance to Colleagues in times of catastrophic need. Compassus C.A.R.E.S. was launched on Feb. 14 with a two-week participation drive to raise awareness of the new program. Compassus C.A.R.E.S. will enable each of us to help all of us, even when we’re unaware of the specific needs. The program raises money primarily through small, continuous payroll deductions. Colleagues elect the dollar amount of their donations. If every Colleague donated just $5 per paycheck, we’d collect roughly $150,000 in a year! In addition, Hospice Compassus will match every donation up to $25,000 a year. That would result in $175,000 a year. Imagine how much good we could do with donations of $10 per paycheck! Each application for assistance is treated with strict confidentiality. The program is handled by the Director of Colleague Relations, and all identifying information is removed before requests are considered by a committee of Colleagues selected from across the country. Thank you to all current and future contributors! – Nicole Altamura, Human Resources/ Compassus Cares Intern Brentwood, Tennessee
It’s Never Too Late
Earning a college degree at any age is quite an accomplishment. At age 88, it’s a crowning achievement. Lola Ide graduated from high school in Ohio and attended college for two years before she married her first husband, Wilbur Lindsey, a seminary student. Financial aid was unavailable in those days, so it was customary for wives to support their husbands through college. She and Wilbur had four children. He died in 1960. Lola later married Conrad Ide, a widower with four children. They soon had a child of their own, completing their family of nine. Conrad was also a minister. Lola says, “I loved being a minister’s wife. I must have loved it to do it twice!” She describes her life as being busy and happy, but she always dreamed of returning to college. “In my dreams, I went to almost every college in the state of Kansas,” she says. Conrad passed away in 2004, and Lola began to consider taking courses at
Pittsburg State University. A visit to her alma mater with some of her children confirmed her resolve. She enrolled in 2006, taking prerequisite classes for a general studies degree. She attended classes on campus during the spring and summer months and enrolled in online courses in the winter. Last May, five years after her journey began, Lola walked across the stage to receive her well-deserved diploma. The audience erupted into a standing ovation, including the students who had attended classes with her, many of whom were at least 65 years younger. “It feels good to finish what I started,” Lola says. After Conrad’s death, Lola found ways to fill her time. She became a volunteer for our Pittsburg, KS, office in 2005. She arrives nearly every Thursday to help in the office. She is like a ray of sunshine, a petite lady who walks with a cane wrapped
with a scarf that matches her outfit. She never has a harsh word to say and always wears a smile. Her advocacy is based on first-hand knowledge. Conrad was a Hospice Compassus patient, and she encourages those with life-limiting illnesses to engage hospice early for maximum benefit. If you’re ever in Pittsburg on a Thursday morning, stop by the Hospice Compassus office. The highlight of your day will be running into our irrepressible Lola Ide. – Teresa Severs, Volunteer Coordinator Pittsburg, Kansas/Joplin, Missouri
Payson’s Shining Example for Health
imberly Poer has energy to burn. Serious Payson Spring Triathlon and ultimately the energy. Triathlon energy. In fact, when she Vineman 70.3 Ironman. In an effort to defray entry fees, Kimberly is joined Hospice Compassus as Admissions Nurse in 2011, she requested time off a year in advance to collecting wrappers from energy bars and granola bars. These wrappers will be participate in the Ironman Triathlon Send in Your Wrappers! recycled into products that will competition in Sonoma, CA, in July To assist Kimberly’s cause, be sold, and the proceeds will be 2012. She also requested time off send energy and granola distributed to charity. The entry fee for her participation in her graduabar wrappers to will be waived for the competitor tion with a BSN from the University Hospice Compassus who collects the most wrappers. of Phoenix. 511 S. Mud Springs Road So, the invitation is hereby Her passion for health and fitness Payson, AZ 85541 extended: Send in your wrappers! began with an early interest in gymnastics. Now that interest has turned toward Support Kimberly’s example of a healthy lifestyle. How does this effort relate to Kimberly’s work with running, biking, and swimming, which comprise the segments of a triathlon. After raising her two chil- Hospice Compassus? “Staying active and healthy is dren – Alycia, who recently returned to the United important to me, not only because it makes me feel States following a three-year tour in Japan, and A.J., better physically, but I also have energy,” she says. who is vying for a soccer scholarship at several col- “Exercise is a great stress reliever, and I believe it leges – Kimberly renewed her dedication to fitness helps me think more clearly, which reflects in the and began participating in marathons and triathlons. work that I do. I need to be at my best every day for Currently, Kimberly is accelerating her training every patient and family that I see.” to prepare for this July’s Ironman competition. She – Roberta Bayles, RN, Director of Clinical Services will compete in the Arizona Half Marathon, Tri for Payson, Arizona a Cure, Marquee Triathlon, RioSalado Triathlon, |3
Hospice Compassus Launches Industry Quality-Care Initiative By Melanie Kilgore-Hill. Reprinted with permission from the Nashville Medical News
nd-of-life issues typically aren’t the focus of healthcare reform, but one local company is hoping to change that. Brentwood-based Hospice Compassus, which operates a nationwide network of 50-plus community-based hospice programs, has launched a national campaign to improve quality care and patient outcomes for the 1.5 million Americans in hospice care each year. “Keeping the Promise 2012” “Keeping the Promise 2012” is a national effort to achieve delivery of the highest possible quality care to hospice patients. Launched in September 2011, the initiative calls for healthcare professionals to actively measure and collect data as it relates to patients’ pain levels and the education they receive regarding medication, treatment and symptoms. Hospice Compassus voluntarily began tracking these and other indicators in January 2011
Corina Tracy, Senior Vice President, answers questions during the “Keeping the Promise 2012” launch in Scottsdale, Ariz.
From left to right: Toni Cutson, M.D., Medical Director, Duke HomeCare & Hospice, Duke University Medical Center; Bruce Ferrell, M.D., Professor of Clinical Medicine, Division of Geriatrics, Geffen School of Medicine at UCLA; Sean Morrison, M.D., Hermann Merkin Professor of Palliative Care at the Mount Sinai School of Medicine, Director of the National Palliative Care Research Center, and immediate past president of American Academy of Hospice and Palliative Care; Louis J. Lux, M.D., Chief of Hospital Medicine at St. David’s Round Rock Medical Center, Vice President and Co-Founder of Central Texas Hospitalists, Medical Director of Hospice Compassus in Austin, Texas, and Clinical Assistance Professor and an Internal Medicine Clerkship Director at Texas A&M Health Science Center, Department of Internal Medicine.
to measure its performance against selfimposed quality standards. “This is a really important step in the industry,” said Corina Tracy, Senior Vice President of Clinical Services for Hospice Compassus. “However, it’s only effective if we’re willing to look at gaps in the system and take it one step further. We’re asking everyone to step up to the plate, not only by educating their staff but by reaching out to the community and to other healthcare professionals.” Hospice and Medicare “Keeping the Promise 2012” comes months before the release of hospice quality measures set by the Centers for Medicare & Medicaid Services (CMS) — the predominant source of payment for hospice care. Beginning in 2014, hospice programs, like other managed care industries, will be required to publicly report on their measures. In 2012, hospices will voluntarily be able to enter Quality Assessment and Performance Improvement data on a CMS website. Patient care indicators will include symptom management, care coordination, patient safety and patient preferences.
Under the current Medicare Hospice Benefit, patients eligible for Medicare Part A (hospital insurance) can receive hospice care when certified terminally ill with a life expectancy of six months or less. Patients who live longer than six months can receive hospice care for an unlimited number of 60-day periods, assuming recertification is provided. Patients can stop the service at any time or in the event of remission and can recertify for hospice care if the illness returns. Hospice also has been shown to reduce a patient’s Medicare costs by $2,300. “Most Medicare dollars are spent on a patient in the last year of life,” Tracy said. “By improving the quality of hospice, people will start to ask more questions and really begin to understand and rely on the service.” By the Numbers In 2009, an estimated 1.56 million Americans received hospice care. According to The National Hospice and Palliative Care Organization, approximately 41 percent of all deaths in the U.S. were under the care of a hospice program. And patients who choose hospice live an average of one month longer than those without.
H Still, it’s estimated that the service goes unused by nearly 50 percent of those who qualify. And with a national senior population of 40 million, it’s more important than ever that families understand the options available to aging loved ones. Busting Hospice Myths Nearly four decades after the nation’s first hospice opened, Tracy said physicians and families often are unaware of the many benefits of hospice care or the advantages of early enrollment in the service. In fact, surveys conducted by Hospice Compassus found that most families wish they had accessed hospice care sooner. “We’re not about the last few days of life,” said Tracy, a former hospice nurse. “Physicians need to know they have a resource in hospice medical directors, not only for pain control but for when they see patients who might not be here a year from now. It’s tough to have that conversation, but hospice medical directors can be a resource for that.” Physicians also may delay hospice care for fear of losing control of a patient’s care. “Hospice really is a patient- and family-driven plan of care, and attending physicians are a large part of that,” Tracy said. “Patients also can get hospitalization while in hospice care, whether they’re in an assisted living center or at home.” While the service often is associated with terminally ill cancer patients, it’s now a welcome option for those living with lung disease, heart disease, Alzheimer’s and other irreversible illnesses. Strengthening the Industry Tracy’s hope for “Keeping the Promise 2012” is that hospices will begin to mandate quality before government regulations require it, and that it will give consumers something besides a brochure to consider when choosing a hospice provider. “Changes to hospice measures are coming down the pipe for everyone,” Tracy said. “What we’re trying to get across is that hospices need to embrace a spirit of achieving quality as opposed to just collecting data. It’s much more about patients, their families and their care.”
Congratulations! Hospice Compassus - Yuma, Arizona, for a dazzling year in 2011. First, the Yuma organization must be applauded for winning the 2011 Top Performer of the Year Award from Hospice Compassus. In addition, the Yuma Sun newspaper conducts a “Yuma’s Best” competition each year. For 2011, Hospice Compassus-Yuma won four awards: H First Place, Best Customer Service H First Place, Best Place to Volunteer H First Place, Best Public Service H Second Place, Best Medical Service Provider
Kudos to Amberly Hodgin, Executive Director, and her dedicated team. Seated from left to right: Alma Clark, Volunteer Coordinator; Frances Rodriguez, Hospice Care Consultant; Sharon Booth, Admissions Nurse; Amberly Hodgin, Executive Director; Michelle Roden, Hospice Care Consultant; Salvador Aquino, Bereavement Coordinator. Standing: Isabel Garcia, Business Office Coordinator and Cathrine Amate, Program Assistant.
Doctors in Our House
Creating Access and Breaking Barriers By Kermit E. White, M.D.
With Our Hearts and Our Knowledge
Why would a patient who is offered all the benefits of hospice
Bringing a caring, compassionate,
care refuse these services? One of the most common mindsets
concerned and knowledgeable staff to a
of any person facing a life-threatening illness centers on denial.
patient’s home is our primary goal. The personal touch makes us who we are.
Medical Director – Detroit, Michigan Member – Hospice Compassus Medical Director Advisory Council
Denial is one of Kübler-Ross’s five stages of dying, of course; but we physicians need to understand how deep a handicap it is in the care of the patient. Besides the
Knowledge is gained from the books,
many cultural and personal subtexts
but the implementation of knowledge
in which it presents itself, denial is
defines our difference.
the most important barrier to palliative or hospice care. It creeps into the process of resolution for both
We feel privileged to be invited into the
patient and support system. The
home at a time considered hopeless and
patient’s assessment of his condition
private. Patient trust is what makes us
remains the most important factor in
the company to call at the time of need.
determining his willingness to move
Hospice Compassus. We’re there when caring counts the most.
Kermit E. White, M.D.
on in the process of “letting go.” Apart from the fear of the unknown,
the belief that “I’m not sick enough for hospice” is the patient’s
By Roberto Lopez-Santini, M.D. Medical Director Waveland, Mississippi
driving motivator for refusal of care. Patients and their families benefit more from hospice care if they enroll early enough to develop relationships with the hospice team and prepare for end-of-life needs. Patients and doctors sometimes avoid discussing hospice, but patients are better served if the goals of care are realistic and targeted to their true needs. Conversations with seriously ill patients about goals of therapy should happen regularly and should be modified as necessary so that when the need for hospice arises, it does not come as a surprise.
To overcome barriers, patients, their Primary Care Physicians (PCPs) and their families need accurate information. For example, many may not be aware, despite our best efforts at informing them, that choosing hospice care does not preclude patients from keeping their PCP, staying at home, choosing treatments or withdrawing from hospice care and reinstating hospice at a later time. Most patients are referred to hospice too late for either the patient or the family to receive the full benefit from the expertise of the hospice team. A common barrier to hospice enrollment is the belief that it is needed only when a patient is in the final stages of dying; hence the denial mantra of “I am not that sick” or “I don’t need hospice yet.” From the provider’s side, the physician may defer hospice referral because a patient “still has a good performance status.” Regardless of the motives for this refusal on the part of providers or patients and their families, studies have shown that hospice care is optimal when relationships between the hospice team and the patient and family have time to develop – more than the last few weeks of life. Experienced hospice workers help prepare patients and families for what they can expect throughout the stages of illness and dying: • what to do when common symptoms arise, and • how to react when unforeseen events occur. Many hospitalized patients envision hospice as a place where they will go after discharge, such as a nursing home or a rest home, involving separation from their loved ones. Occasionally, physicians share this misconception. In fact, most patients receive hospice services in their homes, and most direct care is provided by family members in deference to a patient’s desire to stay and ultimately to die there. If a patient wishes to remain at home, the hospice staff will make every effort to honor this preference. Hospice also provides care in nursing homes. A stay in a nursing home may be needed to better manage
To overcome barriers, patients, their primary care physicians and their families need accurate information. ••• Hospice is about living not dying. A patient does not have to be in the final stages of dying to receive care.
••• Hospice patients can retain their personal physician and pharmacy.
••• Hospice patients can receive care at home or a nursing home facility.
symptoms, to provide laborious caregiving or for other reasons. Every Medicare-certified hospice must offer the option of inpatient care for symptom management in either a hospital or an inpatient hospice unit. Respite care, involving a brief stay at a nursing facility or inpatient hospice, is also available to provide a break for the family in the event of caregiver fatigue, illness or necessary travel. Although respite care is typically limited to five days at a time, no limit is generally placed on the number of times it can be used during the course of the hospice stay. One of the thornier issues in modern hospice care is what level of intervention is appropriate in the care of a dying patient. The kinds of intervention can vary widely; and as mentioned above, hospice does not require a patient to stop seeing his or her primary physician. The philosophy of hospice is to neither hasten nor postpone death. Surveys of Americans show that they prefer the dying process to occur naturally. However, this does not preclude treating common complications that may occur, and many advanced treatments are available. Electing the type
and timing of treatment will always involve the hospice team’s discussion with the patient and family, taking into account the patient’s condition, prognosis, personal preferences, symptom distress and even psychosocial influences. Finally, the potential benefit of any treatment must be carefully weighed against the burden of such treatment. If a patient desires an intervention that hospice does not provide or that the hospice staff believes is inappropriate, the patient can always withdraw from hospice and revert to regular insurance coverage. Hope is thought to be essential for most patients, and conversations about hospice should not detract from that. Physicians often worry that a patient will lose hope if they discuss the possibility of palliative as opposed to curative treatment. But respecting a patient’s desire to maintain hope should be balanced with the obligation to provide accurate information and a realistic prognosis. Hope at the end of life often manifests itself as an expectation that something will happen to change the situation. This is natural and not necessarily unhealthy; and yet, hope should not interfere with the planning and provision of optimal care for current needs. At times, hope overlaps religious faith, and patients hope for a miracle from a higher power. It is healthy to acknowledge faith while at the same time planning for care in case the miracle does not occur. As the benefits of life-prolonging therapy diminish, hope can be refocused on different goals, such as spending time with loved ones and achieving closure to strained relationships or unfinished business. Communication is the key. Through honest and informed communication, we learn to understand concerns, discover goals and desires, convey accurate and appropriate information, and provide comfort to both patients and families.
Article source: ‘I’m Not That Sick!’ Overcoming the Barriers to Hospice Discussions; K. Mitchell Russell, M.D., and Susan B. LeGrand, M.D., The Harry R. Horvitz Center for Palliative Medicine, Cleveland Clinic.
Team Leaders The changing role of the Medical Director in hospice care
he hospice Medical Director role has rapidly transformed from a dedicated volunteer to one of increased specialization and professionalism. At the same time, hospice patients have become increasingly complex; they are living longer and now tend to have By Paul Tatum, M.D. many more chronic illnesses that interact. To meet the complex Medical Director – Columbia, Missouri hospice patient’s needs, it takes Member – Hospice Compassus Medical Director Advisory Council a high-functioning, interprofessional team; and for any team to work, it takes a leader. Gone is the day of the Medical Director practicing the 4 S’s: “Show up, Sit down, Shut up, and Sign the form.” The Medical Director must be an expert in palliating complex illness and a leader of the team. Hospice Compassus has done a great job supporting the professionalization of its Medical Director over the past few years. To provide context, this article will describe the history of Paul Tatum, M.D. medical direction in hospice, the current hospice Medical Director demographics, and a future pathway for hospice Medical Directors to be accredited. Historical Developments in the Role of the Hospice Medical Director In 1988, 250 hospice physicians gathered at a retreat in Colorado to form the first association for physicians working in hospice and palliative medicine. In 1996, the American Board of Hospice and Palliative Medicine emerged and awarded the first physician certification in hospice and palliative care. This organization became the American Academy of Hospice and
Palliative Medicine (AAHPM); which now has over 3,600 members. In 2006, hospice and palliative medicine was recognized as a formal board-certified specialty, achieving subspecialty status with the American Board of Medical Specialties. Formal fellowship programs now provide specialty training toward this board certification. In 2008, numerous changes were made in the Hospice Medicare Conditions of Participation. Among those changes were updates clarifying the roles and responsibilities of hospice Medical Directors. Subsequently the role of the Medical Director was expanded with the requirement for formal face-to-face visits to recertify hospice patients after 180 days. But since the population continues to age and the number of patients needing hospice care continues to rise, the reality is that most hospices will not be served by board-certified, fellowship-trained medical directors. Characteristics of the Hospice Medical Director In a study of all hospice Medical Directors in the state of Missouri, we found them to be seasoned clinicians, most of whom do part-time hospice work. The average age for HMDs was 52.3 years old (median: 51.0 years; range: 33-74 years). The average number of years in practice was 21.5 (median: 21.0 years; range: 5-49 years), with an average of 9.1 years working as a Medical Director for hospice (median: 5.5 years; range: 1-25 years). Nearly one fourth (22.6 percent) were board certified (by the American Board of Hospice and Palliative Medicine process), and none reported being certified from the American Board of Medical Specialties. Additionally, none had completed a Palliative Medicine fellowship, although 41.9 percent had completed training from the American Medical Association’s Educating Physicians about End-of-life Care (EPEC) curriculum. Certification by Experience In response to the great demand of those practitioners working as hospice Medical Directors who will be unable to sit for the Palliative Medicine boards, the AAHPM is developing the National Board for Hospice Medical Director Certification. The Board, led by Dr. Gail Cooney, was formed this spring and met at the AAHPM annual assembly. The plan is for a certification exam in 2013. Stay tuned!
Hospice: “Original Medicine” By Louis J. Lux, M.D. Medical Director – Austin, Texas Member – Hospice Compassus Medical Director Advisory Council
am still somewhat amazed by the comments I get from friends and colleagues in medicine when I tell them how much I love my hospice work: “Oh, that is so great – I am glad there are people who can do that.” Or, “That must be very depressing.” I enjoy telling them, “You are quite wrong.” I admit I get some special pleasure topically, stone nailing of the skull to watching the surprised reactions when relieve headache pain, a chant or dance, I mention that hospice care is the most and most important: a forged human satisfying work I do in medicine because connection with the suffering patient, it is, in truth, original mediconveying empathy and cine. When I say that, my concern as well as providing colleagues usually display an opportunity to explain a head-twisting, puzzled what happened and what look; and before they can will happen. ask why, I quickly explain: In Europe during the both from a historical perMiddle Ages, nuns and spective and as a personal monks of various religious motivation to enter the orders cared for weary or medical profession, hospice ill travelers. Patients often and palliative care medicine died or were expected to die. is about a direct patient Remedies did not always connection and the need to work: the Greek word help remove the suffering of pharmakos means both cure fellow human beings. Not only and poison. Nevertheless, Louis J. Lux, M.D. did the medical field have the ministry of caring for its foundations in meeting these needs, strangers was born. The word hospice but the vast majority of physicians – past, comes from the Latin hospes meaning host present, and future – also entered, or will to guests and strangers. This word also is the enter, the profession on some level to root for hospital and hospitality. satisfy this urge. Several scientific revolutions lead to Prehistoric tribal bands had their shaman dramatic advances in the understanding or healer – an individual whom others and treatment of diseases: antibiotics, could turn to when suffering physically anesthesia, new surgical methods, cancer and/or spiritually. A toothache or a wound therapies, and transplants. Life expectancy sustained in battle, a headache perhaps, nearly doubled in the past 125 years. The or the despair of delivering a stillborn role of the physician evolved as well, from child caused the tribal patient’s distress. healer and spiritual adviser into that of The person designated to take on the role the medical scientist. Public expectations of the healer would use different tools: changed from accepting the finality of life remedies from plants or animals to take to potential infinite existence. During this internally, pastes and poultices to apply time of tremendous progress, however, the
uncomfortable fact began to emerge that the world death rate was still 100 percent, and, more difficult, that more than half of us would die in pain or with some other treatable symptoms. Medicine made strides against diseases but forgot about the patient and the suffering at life’s end. During this same time period, the essential connection between patient and physician seriously decayed. Insurance companies valued profit over people; government regulators valued excessive documentation over time between physician and patient; the medical malpractice legal explosion promoted the notion that all problems and bad patient outcomes were a doctor’s, drug company’s, or hospital’s fault, and that an exchange of money would solve all those problems. The result of all of these factors was the breakdown of trust and confidence between patients and their physicians, and a breakdown of the fragile, critical physician-patient relationship, which significantly affects healing and suffering on multiple levels. Fortunately, the trend is reversing and the hospice movement is helping to lead the way. Dame Cicely Saunders, a WWII nurse in London, saw what was happening to the suffering patient. She went to medical school at age 39 to take care of patients “that medicine forgot’’ – those suffering at the end of life. She opened St. Christopher’s Hospice in London in 1967, the same year as the world’s first heart transplant and the first modern heart-bypass operations. Today, hospice and palliative care is a recognized specialty, available nearly everywhere in America, and part of the Medicare benefit and most insurances. Dr. Saunders is credited with being the founder of the modern hospice movement; but more broadly, she represents the physician’s return to the patient’s original needs: the relief of suffering and the growing recognition of quality of life as opposed to merely quantity of life. (Continued on next page)
My interest in medicine began as a Boy Scout, having to complete the first-aid merit badge. I enjoyed the practical science, the excitement of learning how to manage certain emergent and tense situations, and most of all the heightened responsibility that comes with human problem solving. I also was desperate to use a newly acquired snakebite treatment kit – complete with scalpel, tourniquet, and a blood-sucking pump! I did get a chance to use the snakebite kit, not on snakebite but on my ingrown toenail. The resulting serious infection caused my family physician to insist that I curtail any further surgeries until I reached medical school. My initial affinity for medicine was the satisfaction of learning about the body, its diseases, and disease treatments; but quickly the satisfaction I received on a daily basis came from the connection to the human element: the people and their struggles underneath the disease. Soon the relief of a patient’s symptoms began to have more importance than whether the disease was “cured.” With maturity, I realized that we in medicine “cure” very little, and only prolong and protract and manage the most serious illnesses. I also understood that teaching patients about how diseases unravel the body was just as important as writing a prescription. Hospice, it turns out, is the ideal field for me to satisfy these professional and personal yearnings. First, the goals of care are usually straightforward, and family and other loved ones generally are on board with the plan. The outcome is one that is expected, and time can be spent with patient and family explaining what to expect and how we will help. Opportunities to teach are everywhere: the patients, their loved ones, and the staff. And last, in patients with life-limiting illness, a clarity often settles upon the patient, caregivers, and the hospice team that helps to bring people together, creating additional comfort and meaning more powerful than any drug or procedure. Old family divisions are set aside, petty grievances paved over, and spiritual wounds soothed. This latter force transcends any “healing” experience I have enjoyed or witnessed outside of palliative care, and it is abundantly available while caring for the hospice patient. This is why I believe hospice and palliative care to be such a rich and satisfying field. It is truly original medicine.
Celebrating the Human Condition
For Dr. Jerry Bruggeman, age is an irrelevant statistic
Those who work in and/or around our hospice organization recognize that it takes an exceptional physician to assume the role of Medical Director at Hospice Compassus. Carrying innumerable expectations, high standards and complex cases, these shoes are not easy to fill. In Columbia, MO, we are blessed to have not one but four outstanding Medical Directors. Dr. Jerry Bruggeman has served with distinction as one of them for more than three years. Recently, I had the opportunity to ask Dr. Bruggeman about his career and the path that led him to his role as Medical Director. By Lisa Singleton
Team Coordinator – Columbia, Missouri
What is your approach to your work as a Medical Director at Hospice Compassus? In a discipline that deals daily with emotion and loss, I try very hard to keep things cheerful and collegial. I try to include all team members in all of our tasks – every observation, contribution and opinion is valuable. Most important, the patient’s and family’s wishes are paramount. How were you attracted to this work? During the past few years, I have become heavily involved in long-term care and eldercare, which naturally caused me to experience loss and the end of life more frequently. I am truly drawn to this population of patients and families, which can be easily marginalized in our fragmented healthcare system. Hospice care became a natural direction for my career to take – allowing me to care for the patients I feel most aligned with, as well as enabling me to learn something new each day and celebrating the human condition. The underlying current to this adventure, however, is spiritual. Everyone deals with loss and mortality in their own personal way. Working with hospice has come to be a way of facing the losses in my own life and of helping to fit them into the framework of my Christian faith. What keeps you going? Basically, I try to elbow my way back on the time line – to act younger than I am. I do this by spending time with my friends and family, who share my passions. I have a wonderful wife, three sons and a playful Welsh Terrier. We all love to goof off together, and we have many travelrelated adventures. I also spend time with close friends, my mother and my in-laws, some of the best people put on Earth. How extraordinarily fortunate for me that they are all so accessible and generous with their time. I am exceedingly blessed and exceedingly thankful. How do you maintain a sense of humor? I suppose I just refuse to grow up! While I can’t prevent the accumulation of birthdays, I can try to put the years in places of my choosing.
Although modest and understated, Dr. Bruggeman is widely held in the highest regard for his professional practice and collaboration across disciplines. He is an example of dedication and commitment to patient advocacy. He delivers personalized care to all patients in all circumstances, enabling others to do the same. We are truly grateful to have not only Dr. Bruggeman but also the many other Medical Directors as dedicated members on the Hospice Compassus team.
Dr. Bruggemans’ work and vision have a significant impact on individual lives, particularly those of the most vulnerable patients. Hospice Compassus colleagues’ comments help illustrate his considerable attributes: “Dr. Bruggeman spent his Christmas holiday in Florida. He continued to answer every call placed to him. He even found a fax machine out in the middle of nowhere to make sure we received required signatures in time. Recently a Medical Director from another office was faced with a family tragedy. Dr. Bruggeman promptly offered to cover all his calls as well as facilitate his IDT as long as needed.” – Melissa, D.C.S. “Dr. Bruggeman is always pleasant, no matter the circumstance. His dedication and compassion are evident through his work. His tireless efforts to ensure every patient is given the highest level of care speak volumes about his character.” – Mary, M.S.W. “I contacted Dr. Bruggeman for an urgent patient order. He answered the call while on an outing riding bicycles with his family. He expressed no complaints and cheerfully took care of the needed order without delay.” – Lee Ann, R.N.C.M. “We call numerous physicians and Medical Directors weekly. Dr. Bruggeman responds to every urgent request in a friendly, hospitable manner.” – Nancy, O.C.R.N. “Dr. Bruggeman maintains a great sense of humor, which has a positive impact on what can be a very stressful work environment.” – Shelly, R.N.C.M.
“Dr. Bruggeman never makes staff feel inferior. He is quick to communicate what a great life he has, but he never mentions the hardships his role often brings.” – Kathy, R.N.C.M.
Back to the Start Remembering the first tenet of medicine By Kurt Merkelz, M.D. Medical Director – Houston, Texas Member – Hospice Compassus Medical Director Advisory Council
he question that I put to the medical students was simple and straightforward: “What are some simple recommendations that can be given for a patient who is complaining of shortness of breath?” The response was universal and not exactly what I was hoping to hear – morphine! Having worked and lectured in a variety of settings around the world, hearing this as the first or only response generated grave concern. Although quite effective in reducing the sensation of shortness of breath, morphine has become a panacea in the hospice world. The prescription of this drug has become so commonplace that we risk losing one of the core tenets of medicine: First, do no harm. Morphine has many known and common side effects including nausea, constipation, urinary retention, dehydration, lethargy, confusion, mental dullness, etc. Not only should we not jump at every opportunity to prescribe this medication, we need to remember that many proven recommendations can be and should be put forth well before reaching for it. In addition, many well-known remedies exist that have nothing to do with drugs, including one I was humbly reminded of. I was lecturing to a large group at the Amrita University of Medical Sciences in Kerala, India. As a somewhat cherub-looking, redfaced and young physician, I was intimidated to be presenting to such a manly looking group of professionals, many of whom sported full beards and mustaches. I was nervous, concerned that my talk on pain management might be too basic for this group of physicians. I reviewed all the science behind the assessment and treatment of acute and chronic pain. I reviewed the physiology of pain transmission and presented a good pharmacological overview of the available medications, following the World Health Organization (WHO) stepladder approach. At the end of my talk, during the questionand-answer session, one of the physicians in the audience stood and thanked me for a clear and helpful lecture. He said, however, I hadn’t touched on a very important aspect of pain management. I didn’t mention anything about “loving” my patient. As a caregiver, he said, we have the ability to give love to, and receive love from, a patient; and this love
Kurt Merkelz, M.D., with his family.
could do much in the way of alleviating a patient’s pain and suffering. He explained how this love could be shown in the ways we touch, comfort and interact with the patient. How humbled I was. In much of India, and in many parts of the world, including Africa, narcotic medications cannot be prescribed. Many areas simply have none available. Many years prior to my India lectures, I organized a medical brigade in southern Honduras. As assistant director of international health at the University of Cincinnati, I helped coordinate these brigades around the globe. During one, a father arrived having carried his 6-month-old baby four hours over switchbacked mountains to the church where our brigade was setting camp. The baby had a swollen and reddened hip. There was no history of trauma, but the leg did appear out of place, and any movement of the child’s leg sent the child crying in pain. We were in the middle of the jungle; certainly no X-ray or ultrasound was available. The baby had been breastfed, and the man arrived without his wife, left behind with the other children. The best option was to try to reset the hip; but without pain medications, our options for anesthesia were limited. Time was running out, and the baby was not taking the formula. I fashioned a hip cast and loaded the baby up on benadryl for the painful trip back to his home deeper in the jungle. By allowing time and the cast to reduce some swelling
and inflammation, I hoped the hip would reset itself. I checked on the baby four days later during a break. After several hours of hiking, I found a happy mother and baby with no further pain or swelling – and no fracture. Thankfully for us, medications and more aggressive treatment options are generally just around the corner. But aggressive interventions are not always the best option, and they are by no means the only treatments at our disposal. Let’s look, for example, at shortness of breath, a common symptom described by patients with life-limiting illness, even if that illness does not involve the lungs. Before medications are offered, the underlying disease process should be considered; and we should think about other ways of addressing the patient’s symptom that have fewer side effects than drugs. These techniques are simple, safe and shown to be an effective therapy for a variety of factors contributing to the sensation of breathlessness. • Independent of the underlying illness, patients will often report that their breathing is more comfortable sitting upright rather than lying flat. This position allows the lungs to better expand and the rib thorax to form a barrel shape, providing easier breathing. • A cool room with moving air has been shown to be helpful, reducing the feeling of claustrophobia. • Providing a fan to blow air softly and directly into the face can be just as effective as giving oxygen. • Energy-conserving techniques such as walking aids for patients with COPD frequently has good results. • Where over-stimulation and anxiety are contributing factors, creating an open environment and reducing noise and distractions can assist. • Guided imagery, music and other relaxation approaches can help. Clearly we have many alternatives to be explored before turning to morphine or other drugs to relieve the feeling of shortness of breath.
As a caregiver, we have the ability to give love to, and receive love from, a patient; and this love could do much in the way of alleviating a patient’s pain and suffering. ••• Hospice Compassus can provide the many other therapies that offer effective benefits without the inherent risks.
In 2004 I worked with Dr. Anne Merriman, founder of Hospice Africa, helping to support the first conference on palliative care in Uganda. Prior to 1990, morphine was unavailable in Africa. Now, more than 12 countries have powdered morphine available for reconstitution. This mainstay drug of hospice care is widely available. Morphine is an excellent and simple drug to treat pain and shortness of breath. However, side effects from this drug, as well as patient and caregiver fears, do exist. This fear of morphine still restricts many physicians from adequately treating patients’ symptoms. I was happy to see the new medical students recognize this drug, but I was concerned that so many useful non-medication treatments were not mentioned. Fortunately, trained caregivers in teams such as those at Hospice Compassus can provide the many other therapies that offer effective benefits without the inherent risks.
Many Minds, One Goal
The Medical Directors of Southwest Missouri bring experience and expertise to hospice care By Vicki Brown Volunteer Coordinator Springfield/Osceola, Missouri
ometimes when “great variety” is combined, it can be overwhelming, producing results that deviate from the original goal. You know, like too many spices in the beef stew. But not in our case. Take a look at our recipe for a diverse but harmonious group of Medical Directors. Together, they create a wonderful balance of experience, expertise and guidance that meets our goal – to be excellent hospice providers. What seamlessly blends this group of Medical Directors together is their agreement that hospice should not be perceived as giving up. Dr. Billings explains, “Medical school does not include extensive training
Dr. Christopher Billings
Dr. William Cunningham
Dr. Timothy Jones
Dr. Christopher Billings was born in Kirksville, MO, and received his medical degree from the College of Osteopathic Medicine at Oklahoma State University. His residency was with the University of Kansas School of Medicine, Wesley Medical Center, Wichita. Dr. Billings practices family medicine at several local LTCFs. He and his wife, Jill, have two children, Brooke, 16, and Zach, 15. Spending time with family comes first, but he also enjoys golf and running. He accompanied his physician grandfather on house calls into rural areas when only seven years of age, deciding early that medicine would be his life’s ambition.
Dr. William F. Cunningham joined the Oncology Hematology Associates of Springfield, MO, in 1984. Born in Boise, Idaho, and a graduate of Duke University, Dr. Cunningham and his wife, Charlene, have five children ranging from 22 to 33 years of age. According to Dr. Cunningham’s wife, he has no hobbies because he is always connected to his work, but he has been active in mission trips since his early college days. Although there were several engineers in his family, Dr. Cunningham chose medicine, perhaps partly because his mother was a nurse. His specialty, oncology, was selected because cancer has been prevalent in his family.
Dr. Timothy Jones was born in Springfield, MO, and graduated from the Kansas City University of Medicine and Bio-Sciences. His residency was with Cox Family Medicine. He practices family medicine at Steeplechase Family Physicians in Springfield. Dr. Jones and his wife, Kendra, have two children, Chandler, 13, and Lexi, 10. He is an avid traveler and enjoys the outdoors. He lists golfing, camping and fishing as hobbies. An aunt can be credited for arousing his interest in medicine when he was a sixth-grader. She sent him a pocket-sized Gray’s Anatomy. He remembers understanding very little of its content but being captivated nonetheless.
on end-of-life or palliative care, and some physicians are not comfortable in working with hospice.” Dr. Watt agrees, “By training we are programmed to prolong, to save lives; to treat illnesses, not palliate them. The goal has been to cure.” And Dr. Jones observes that people are afraid of dying. Because they are uncomfortable with the subject, physicians don’t like to bring it up. Those involved in caring for hospice patients always hope that families connected with the process come through the experience believing that the patient’s end of life was as full and comfortable as possible. It is also important for everyone to understand, as Dr. Cinningham says, “We are not agents of death – we are supportive.” Dr. Billings agrees. “We want families to have a positive, supportive environment for the end-of-life experience with their loved one,” he says. The entire hospice concept can be summed up by Dr. Watt’s observation: “Hospice is all about quality – not quantity – of life. We are here by no means to shorten that life. We hope we are helping people understand that dying is a part of everyone’s life. Celebrate that life and appreciate that life.” (Continued on next page)
Dr. William Moore
Dr. Wayne Morton
Dr. William Moore was born in St. Joseph, MO, and graduated from medical school at the University of Missouri-Columbia. He is an internist at Ferrell Duncan Clinic. Dr. Moore and his wife, Julie, have two children, Benjamin, 13, and Bethany, 10. Outdoor activities, sports and working out help Dr. Moore relax. He sings in his church choir and remains active in mission work. Dr. Moore’s wife says that her husband’s inspiration to care for others can be attributed to his twin brother, Wesley, who has had to face medical issues since birth.
Dr. Wayne Morton grew up in a small town in Nebraska and graduated from the University of Nebraska Medical School. Following a family practice residency in Wichita, KS, he is now part of The Morton-Vanzantan Clinic in Osceola, MO. Dr. Morton and his wife of 43 years have three children and seven grandchildren. For relaxation, Dr. Morton enjoys raising beef cattle on his farm. He also enjoys restoring acreage to prairies, glades and savannahs. His love for working with people and for living in a small, rural setting led him to the medical field.
Dr. Robert Powers Dr. Robert Powers was born in Kansas City, MO. After a bachelor’s degree from Truman State University, a year of liver research on glucose/ insulin metabolism and a year in medical technology, Dr. Powers entered and graduated from Kirksville College of Osteopathic Medicine. He completed his internal medicine residency at what is now known as Deaconess Hospital in St. Louis, MO. Dr. Powers has been in the Springfield area since 1991; and since 2000 he has been part of Ozarks Community Hospital. Natalie Jane and Dr. Powers have three children: Olivia, 15, Brad, 22, and Brett, 25. He became a physician for two reasons. His father was a pharmacist and, at an early age, Dr. Powers was recruited to do chores in the pharmacy. His father encouraged an interest in the medical field. Second, a fraternity brother helping an ill patient with physical therapy got Dr. Powers involved. Caring for this patient inspired Dr. Powers to enter the medical field to help others. To relax, Dr. Powers likes to “try to play golf” and enjoys fly fishing, especially for salmon.
We are very proud of our Medical Directors. Their compassion and support of our hospice philosophy are always visible. Our staff is honored to have such a wonderful group of physicians on our hospice team. As unbelievable as it sounds, these eight Medical Directors bring with them over one hundred and ten years of hospice experience! As a member of all our Hospice Compassus - Springfield/Osceola teams, I get to observe each of these individuals at work, and I am impressed. They are entertaining, educational, professional, and always approachable.They have our admiration for what they do and how they do it.
Dr. Scott Turner Dr. Scott Turner was born in Wichita, KS, attended Ouachita Baptist University in Arkadelphia, AR, graduated from St. Louis University School of Medicine and completed a family medical residency at Cox in Springfield, MO. He practices at Patientcare Family Clinic in Springfield. Dr. Turner and his wife have two children. Garrett, 25, is a graduate student in Boston, and Kaitlyn, 22, is director of HOPE House in Sulphur, LA. For relaxation, Dr. Turner enjoys duck and turkey hunting, cheering on the Cardinal baseball team and growing garlic. Asked why he chose the medical field, he replies that his mother told him to! Actually, he loved science, was good at it and did well at his pre-med major, though it was â€œtough.â€? He decided that a smalltown atmosphere suited him well, so family medicine became his goal.
Dr. Kevin Watt Dr. Kevin Watt was born in Fort Scott, KS, and received his medical degree from Kirksville College of Osteopathic Medicine. His residency was completed at Tulsa Regional Hospital. He is a family practice physician with an office in Rogersville, MO. Dr. Watt serves as Medical Director for several local LTCFs and is boardcertified in geriatric medicine. He and Kristine, his wife of 33 years, have three children, Sarah, Zachary, and Emily. In his spare time, Dr. Watt enjoys deer, and sometimes quail, hunting. He is also a knowledgeable and dedicated saltwater aquarium enthusiast.
How Doctors Die
It’s Not Like the Rest of Us, But It Should Be
ears ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds – from 5 percent to 15 percent – albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him. It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently. Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen – that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right). Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of
By Ken Murray, M.D. This article was originally published at Zócalo Public Square (www.zocalopublicsquare.org)
this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict (Continued on next page)
on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo. To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice. How has it come to this – that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system. To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not. The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a
reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering
When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions. But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or
effort, especially if the doctor is advising against further treatment. Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital. Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died. It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation
and do whatever they’re asked, with little feedback, to avoid getting in trouble. Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later. Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment. But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather
than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common. Several years ago, my older cousin Torch (born at home by the light of a flashlight— or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me. We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20. Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.
Roses Are Red Rose are red, violets are blue, there is no one like you. A blessing was sent, a prayer was answered, to care for my brother who has cancer. You are a gift to him and us, stopping the confusion and fuss. Touching him with your care, like a breath of fresh air. Trading his pain for comfort, helping him not to suffer. We are blessed to have you, and thankful for all you do. You will always be in our thoughts, all your love and care will never be forgot.
B y C arol C off in Sister of Hospice Compassus patient J. Caviness Jefferson City, Missouri
Not All Pain Is Physical Gaining new insight to hospice care
By Burt M. Bujard, M.D. Medical Director – Lafayette, Louisiana
have practiced internal medicine for 44 years privately and for six years as a hospitalist at Dauterive Hospital in New Iberia, LA. When I first started as a hospice Medical Director, I was under the impression that hospice care was physical pain relief for a dying person. I learned that care of the hospice patient is more complicated than I had envisioned. Relief of physical pain is certainly primary, but what I didn’t consider is that pain and suffering can be divided into three categories: physical pain, mental pain, and spiritual pain. To give total hospice care, all three of these pain categories must be relieved. In order to do this, one must first have compassion for the terminally ill patient. If a hospice Medical Director or nurse does not possess this quality, relief of pain will probably not be optimal. Thus the name of our organization, “Hospice Compassus,” is apt. Relief of physical pain is certainly primary. This pain can stem from multiple sources, and we must relieve it to the patient’s satisfaction at all cost. There are a number of medications that can be used, singly or in combination, to ensure that this goal is met; drugs are available to control pain on an extended basis, as well as those that are effective for break-through pain. The hospice Burt M. Bujard, M.D. team is well-prepared to provide whatever is necessary so the patient does not suffer physical pain. Mental pain and suffering can be almost as bad as physical pain. Most patients become increasingly anxious and depressed when terminally ill. These symptoms are magnified after being accepted by hospice, because they
perceive that their regular doctors have given up on treatment and that there is no cure for their illness. They will probably die soon. As hospice doctors and nurses, we must relieve this mental pain and suffering and also be alert to any signs of suicidal ideation. Nurses should have appropriate medications in the emergency kit to use immediately, because acute agitation or delirium can be very hard on the patient and frightening to the family. Spiritual pain and suffering should be given as much attention as physical and mental pain. This is why each Hospice organization has its own spiritual adviser. The doctor, nurse and spiritual adviser should attempt to make the patient feel at peace with their God during the last few days or months of life. We should always ask Catholics whether they have received the Sacrament of the Sick and Dying, because at times of severe illness and stress, the family and patient may forget to do this. The family is sometimes reluctant because they are afraid it will scare the patient. My experience as a doctor is just the opposite. It has a calm, soothing effect. After this, the patient is not afraid to die. In addition to the visits from the hospice spiritual adviser, the patient and family should request periodic visits from their own pastor or priest and support from prayer groups. These efforts relax the patient, who loses the fear of dying. A well-organized hospice organization is a must. As one of three Medical Directors, I am fortunate to work for Hospice Compassus in the south Louisiana city of Lafayette. We are like one big, happy, caring family, and this atmosphere is transmitted to our patients and their families. I now understand more what hospice care is about and because of this, I am proud and honored to be a Medical Director for Hospice Compassus.
The Doctor in Our House By Linda Tillery
Volunteer and Grief Support Group Member Columbia, Tennessee
e were retiring! Finally! After all these years of marriage, raising kids, saving money and planning on how we would spend this wonderful time of our life, it was here. We would spend a few months in the Florida sunshine. We would walk on the beach, scuba dive, kick back and enjoy the fruits of our labor. But the best-laid plans sometimes go astray. And ours did. We had sold our farm and moved to town, as so many retirees do, downsizing, getting ready for the “rest of our lives.” This is when we got the news: You have cancer, the fast-growing kind. We must do surgery, have treatments. And then after the treatment, during the first check up, the words nobody wants to hear, “The cancer has returned and it is bad. There is nothing else we can do. No more options. Get your affairs in order, then call hospice.” Call hospice. That means the end, right? I never wanted to hear those words. I never thought it would happen. The place we bought when we downsized was a plain little house with a basement. Living room, kitchen, bedroom all on the same
Lamar and Linda Tillery at home.
level. What we failed to realize was that to get to this level, we had to confront stairs, lots of stairs. Every alternative meant steps; and and now he is sick and how will I get him out of the house, down those steps, in the car and to the doctor? The doctor. How important, all of a sudden, that person has become. Now the only time we go anywhere is when we go to the doctor. Appointments, treatments, scans, all concerning the doctor. He is the most important person in our lives now. We know words we didn’t know before cancer became our constant companion. We speak in ways we never thought we would. Life is coming to an end. Things are changing. We wait for the doctor’s report, the doctor’s prescriptions, the doctor’s opinion, the doctor’s knowledge. He becomes almost our god as we hold our breath while he reveals the results of the latest test. And now we can no longer go see that doctor. We are now on hospice. What will we do? How will we manage? Where is our doctor now? Well the one we had is still in his sterile office, looking at scans and blood work and tumor markers. But with hospice, we have our own doctor. When I see our hospice nurse coming into the room with her bag of medicines, or her syringe, or her notebook, I feel relief. I think, “Here comes the doctor.” She brings with her a peacefulness and gentleness that I have come to recognize as part of dying this way. She is a professional. She is the doctor. And she is here, in the house. There is pain, but the moment it comes, our nurse is there, with whatever it takes to make it better, or as better as it can be made. I never saw the actual person who was serving as our doctor. But I knew he was as near as a phone call from the nurse.
Linda Tillery, seated, is surrounded by Hospice Compassus colleagues, from left to right: Sarita Fields, Bereavement Coordinator; Janette Mayberry, R.N. Case Manager (R.N. for Linda’s daughter and husband); and Julia Logan-Mayes, Volunteer Coordinator.
She was there, phone in hand, and the doctor was on the other end of the line, telling her what to do; although in my mind, she already knew. She knew that doctor, she knew my husband, and she knew me. She knew where the kitchen was and where we kept the extra toilet paper. She was standing there at his side when he died. She was holding his hand and looking at me. She gave him comfort, and she gave me strength and courage. To do what had to be done. And she let me know that dying is part of living, as natural as breathing. It is not a thing to fear. It is a fact. And I believe her. She is the doctor. I see my hospice nurse sometimes out at the store, or at a yard sale. I see her, and I look into her eyes and there it is, that understanding, the bond that comes from experiencing life-changing events together. I will never forget her. Never forget hospice. I will always be grateful that when it became impossible for us to go the the doctor, thanks to our hospice nurse, there was a doctor in the house. Editor’s note: Linda’s daughter, Wendy, died in March 2009 and her husband, Lamar, died in June 2010. Linda has been a member of the grief support group and is now a volunteer at Hospice Compassus in Columbia, TN.
My Time with Tony By Tom R. Van Sickle Volunteer – Sedona, Arizona
n Wednesday, Dec. 14, 2011, I hung up my “braces.” My time as a hospice volunteer had been enjoyable, but the fire bell was ringing and I knew I had to get on with my life. Before I go, I want to say thank you for all that hospice has done for me, especially for getting me back on track after Georgina, my partner of 19 years, passed away. The clock ran full circle when my last patient, Tony Ybarra, died. Tony had faced kidney failure, diabetes, blindness in one eye and 80 percent vision loss in the other. He was on dialysis and had calciphlaxis. When I first met Tony, he and his wife, Amy, were sitting in the sun on their front porch. “Good morning, I’m Tom,” I said. He said, “I’m Tony,” and thrust out his hand in greeting. His handshake was firm and strong. I sat in the empty chair next to his. When he informed me of his blindness, I was astonished. I had suspected nothing for the hour we had talked. Tony was only 59 years old. He had the courage of a lion, the determination of an ant and the attitude of a howler monkey. That first day, we hit it off like gangbusters, and I returned to his home once a week 15 times. We talked about construction: roads, bridges and buildings. We talked about hunting big game: elk, deer, buffalo and exotic game in Texas; caribou, moose and mountain sheep in Alaska. We discussed camping and various places in Arizona and New Mexico, places that we either had stumbled on or sought out. Both of us were the father of three sons and one daughter, so we bragged a lot on our children. Parents also entered the discussions; Tony’s father and grandfather are still alive, and my mother died only two years ago. Tony savored his memories of growing up in the small city of Winslow, AZ, and I extolled the virtues of living on a Kansas farm. When I was assigned to Tony’s case, the acting Volunteer Coordinator knew that I had chronic kidney disease and would face dialysis within six months. She thought that it might be beneficial for me to experience a relationship with someone who was going through dialysis
Tony holds his granddaughter, Laney Bell Davision, on Halloween 2011. His wife, Amy Ybarra, is also pictured.
longer had the same allure. He spoke of his own mortality, and his infectious laugh grew fainter. The stories of hunting deer and elk no longer seemed important. Even though the volume of our dialogue decreased, our discussions became more important. On my last visit, Tony had missed dialysis the day before and was bed-bound. He was lapsing in and out of consciousness. But he recognized me and said, “Good morning.” I didn’t stay long. His family was gathering to support him and his wife. There would be no more respite care. Within 24 hours, Tony went to his reward, which surely must be great if it is given for courage, determination and a dedicated spirit. But the greatest award must go to Amy. She gave Tony a kidney some nine years ago after he experienced total kidney failure. He continued to work, and he and Amy filled their weekends and vacations with fishing and hunting trips. They camped as often as they could, and Tony cherished time with his grandchildren. Amy was Tony’s Mother Teresa who tended to his every need. She was his personal chef, his principal nurse and his constant companion. Every morning she cared for his swollen legs, one of the byproducts of diabetes. She removed the soggy gauze, cleansed the open sores and renewed the bandages for the coming day. She and Tony packed a lifetime of reminiscences into his last nine years. I gained more from Tony and Amy than I ever provided to them. They gave me the impetus to make drastic changes in my lifestyle, and today I am reaping the benefits. Hospice has given me a new window on life. My only regret is that I did not have the training when I needed it most. When my dear Georgina was in the final stages of ovarian cancer, we called on Respiratory Therapists Associates, the predecessor of Hospice Compassus in Sedona. They answered our call, and that is why I later volunteered. I didn’t have a chance to “pay it forward,” so I paid it back. In the exchange, I received a new lease on life. Thank you, Hospice.
four hours a day, three times a week. She was so right. In August I was melting down. I had my veins mapped to determine whether I would have a stent or a fistula for access to dialysis. My veins proved to be narrow, and I would therefore require a fistula. I was within hours of checking myself into the high-security Senior Behavior Lifestyle Unit at the Verde Valley Medical Center in Cottonwood, AZ. But meeting Tony on Aug. 9 changed my life. I became determined to avoid dialysis. I sought out a new naturopathic doctor in Sedona. She reviewed my diet and made some changes. And then she prescribed a Chinese tincture – a mixture of Chinese rhubarb, salvia and foxglove. Protein all but disappeared from my diet – not just red meat, but also fish, chicken, milk and even beans. The change was not easy, but in no time I missed them less and less, and now, I miss them not at all. Slowly I began to improve. My good numbers inched upward and the bad numbers slowly declined. I began to feel more energetic and started walking short distances. By the beginning of October I was starting to live a full life again. At the same time, Tony started to fade. His rare exuberance sank into the sunset. The cowboy western movies that he knew by heart – he couldn’t see them, but the words echoed in his mind – no Tom R. Van Sickle
While the author is no longer a patient volunteer, he continues as a member of the volunteer vigil committee at Hospice Compassus - Sedona.
Life after Death ~
Helping Those on the Path to Personal Wellness By Judy Ermold – Springfield, Missouri
Editor’s Note: In the previous issue of Everyday Compassion, three women candidly discussed how they have adapted to new lives without their mates (“Life after Death – Part I”). Within the Hospice Compassus network, there are countless more stories to tell. Here are interviews with three more “survivors” who were devoted caregivers to their loved ones. Sharon Cates, Donna McGee and Linda Noblin share their experiences and offer encouragement to others struggling with personal loss.
When Sharon Cates was a 19-year-old bride, her mother-in-law told her the men in their family died young of heart disease, and she feared that Frank would, too. To minimize the risk of an untimely death, Sharon researched heart disease and insisted that Frank seek preventive care from a highly respected cardiologist. At age 61, Frank died. Of cancer. Sharon is an upbeat, energetic and self-assured woman. She speaks candidly about “the worst nightmare” of her life, starting with the realization that Frank’s cancer was incurable. “People around us were uncomfortable, so they pretended everything was okay,” Sharon says. “They didn’t want to talk about the important stuff.” She and her husband did find support and understanding from Hospice Compassus in Springfield, as well as from the caregivers at a local hospital, where Sharon spent long hours curled up on a chair next to Frank’s bed. One evening, when Frank saw his wife dozing uncomfortably, he demanded she get into bed with him. Surprised, Sharon wasn’t sure she should comply – until the nurses nodded their approval. Sharon snuggled up next to her husband in his hospital bed and experienced a closeness that was important to both of them. “It was a poignant moment for me,” she says, “because Frank was able to hold me in his arms and tell me he looked forward to more cuddling at home.” Sharon’s smile fades and tears fill her eyes. “But he was
too sick. He died six days after he returned home from the hospital.” Sharon and her family are grateful to the hospice nurse for alerting them to Frank’s imminent death. “It’s a profound experience to be with a loved one during the last moments of his life,” she says. When the funeral was over, Sharon felt exasperated. “I spent a lot of time being angry,” she remembers. “People didn’t know what to say to me. They meant well, but it made me angry when they told me I was “doing well” – how could they know? – or when they advised me to get on with my life – you don’t know what’s best for me; heck, I don’t know what’s best for me! I wanted people to talk to me, but there were no words that could make my life different.” Widowed at age 58, Sharon tried to rationalize her loss. “God gave me a husband, two children, a home, a job, and a really nice life,” she says. “In our 38 years of marriage, we did a lot of living.” But, as other grieving spouses will attest, even the most vigorous pep talks are not always effective. Frank’s absence was sometimes overwhelming. “Coming home, and not having him there waiting for me, was so
difficult,” she says. “It’s still difficult, especially when I have news to share with him.” One unexpected challenge for Sharon arose from a shifting relationship with her children, Alison and Brian. “While searching for a reason to get out of bed (Continued on next page)
Here are the young Sharon and Frank Cates (left) and the “mature” Cates couple, who would be married 38 years before Frank succumbed to cancer.
every day, I tried a lot of new and different activities – even tango lessons, which didn’t work out at all,” she says. “I needed to find my passion, and during my search, the kids sometimes didn’t understand my choices.” Sharon knew she had to follow her instincts. “The business we owned, Seminole Décor, was Frank’s dream, and we maintained it for about 30 years. After he was gone, I wasn’t interested in keeping it,” she says. So, her daughter and son-in-law, Alison and Dan Rosebrough, purchased the store. Because she couldn’t bear living in a large house filled with reminders of a life that was no longer hers, she moved. Sharon describes her grieving process: “After Frank died, my life was devastated. I wanted to die, too. Time passed and I didn’t die, but I still didn’t care about living. Later I decided that, well, if I have to live, I need to get busy.” For Sharon, getting busy meant reviving her sense of humor, celebrating holidays again, returning to work, biking, traveling, and volunteering. She pursued her interest in both color and feng shui. She enjoyed dinners with her dad, Dave Hunt, and playing with her grandchildren. Two years after Frank’s death, she purchased a custom-made bike and embarked on a series of biking trips in the United States and abroad. She joined other cyclists to bike and hike in the Czech Republic and Austria. Cycling has become a passion. “There were two very specific things I really wanted to do: visit Glacier National Park in Montana and become a hospice volunteer,” Sharon says. And she has done both. Making personal collages has helped Sharon cope with stress and gain insight into her life. “They’re not fancy,” she explains, “but they are meaningful to me. I find pictures, clippings from magazines, prayers, poems and little mementoes that I like and glue them on sheets of cardboard.” She is certain these arrangements reveal both the past and the future. “When you live forward but evaluate your collage backward, you often see that events or ideas represented on a board have come true.” Sharon believes that overcoming grief involves action – sometimes extreme action – because challenges can be
therapeutic. “That’s why on my bike trip in Nova Scotia, I tackled a steep hill,” she says, grinning. “And do you know what I found on the other side of that hill? Another hill!” lll Donna McGee “Donna is my niece, but she is like a daughter to me,” Fannie Murphy explains when I introduce myself as her hospice volunteer. Like a daughter, Donna McGee became a loving caregiver when Fannie needed her. “My mother was the baby of the family,” Donna explains, “and she looked after her older sister, Fannie, later in life. After Mom died, it was easy for me to step in and help out. I was always close to Mom’s side of the family, and I always loved Aunt Fannie.” Every morning, rain or shine, Donna drove to the nursing home where Fannie lived to greet and dress her aunt before taking her to breakfast. Afterward they would set up card games, dominoes, or Rummy Cube in one of the lounges. They once tried to teach me how to play Phase 10, a game Fannie excelled in at age 95. In addition to overseeing Fannie’s physical comfort and medical treatment, Donna cared for most of her aunt’s personal needs, such as laundering her clothing at home rather than using the facility’s service. She regularly stocked Fannie’s bedside table with generous supplies of favored snacks. Every evening, Donna called or dropped by to check on her aunt. On Sundays, Donna and her husband, Sam, hosted family dinners that Fannie attended as long as her health and stamina allowed. While the schedule seems daunting to me, according to Donna, it was no big deal. “I’m an early riser anyway,” she says. Observing Donna’s gentle, take-charge manner during visits with my hospice patient, I was not surprised to learn that Fannie’s niece is a former LPN who has worked in various departments at a local hospital. She retired after completing 32 years of nursing service. Chuckling, she points out that when medical questions arose, “Everybody in the family paid attention to me – everyone except my husband!” Donna and Sam celebrated
At her birthday party, Fannie Murphy and her niece, Donna McGee, enjoy time with Fannie’s great-nephew.
their golden wedding anniversary in October. Witnessing Donna’s devotion to her aunt, I admired her steadiness as a caregiver and marveled at the equanimity with which she handled Fannie’s final days. In the midst of sadness, she found calm. Clearly, she had watched her aunt’s health decline, with no chance of improvement. “After Aunt Fannie got the flu, she became weaker and fell several times,” Donna recalls. “A temporary move to another room confused and bothered her. After that, she went downhill quickly.” Donna phoned Fannie’s two sons, who live out of state, so they could speak to their mother minutes before she died. Although Fannie was unable to speak, she could hear their voices. Fortunately, Fannie had been pragmatic about her mortality. Long before she was ill, she took control of planning and financing her own funeral. She selected the dress she would wear, the speakers who would talk about her life, and the songs that would be sung. She knew exactly where she would be buried, with her husband, Tim. Donna points out that Fannie’s foresight and willingness to communicate relieved her family of confusion and stress.
Linda Noblin, right, believes that after love, advocacy was the greatest gift she gave her mother, Evelyn McCollegan.
Donna credits her faith and religious training for her peaceful acceptance of death. She explains, “In our faith – the Church of Jesus Christ of Latter-day Saints, or Mormon – families are reunited after death. So, while I miss Aunt Fannie and other loved ones who are no longer here, I know we’ll all be together someday.” Following her aunt’s funeral, Donna returned to an active life devoted to her family and to church activities. “With 18 grandchildren and one greatgranddaughter, it’s easy for me to keep busy,” she notes. Family dinners on Sunday continue, and Donna becomes an enthusiastic fan when her grandchildren compete in athletics. She and her husband spend time maintaining their home, and they enjoy trips to their son’s cabin at Table Rock Lake. An active participant in her church, Donna selects and leads the music for her congregation. As a “visiting teaching partner” of the Relief Society program, she regularly calls on church members to locate and help families in need of assistance. Donna is grateful to have spent precious time with her Aunt Fannie and believes other caregivers who help their loved ones through the final phase of life will be rewarded also. “It is truly a blessing,” she says. lll Linda Noblin By the time Evelyn McCollegan turned 90, she had already started bargaining with her creator: “God, why won’t you take me?” she asked every night. “I’ll be good up there!” She jokingly remarked to her daughter, Linda Noblin, and to me, her hospice volunteer, “He’s not listening, because the next morning I’m still here.” Although Linda understood and accepted Evelyn’s eagerness to leave this world behind and join her husband in a better one, she felt lost when her “lifelong compass” passed away. “Like most people, I’m faced daily with decisions to be made, and many times these decisions are ethically based,” Linda says. “So I ask myself, WWMD? – what would Mom do?” When Evelyn moved to Springfield in 1999, Linda and her brother, Fred, were
partners in their mother’s care. Fred and his wife, Susan, lived only minutes from Evelyn’s retirement community, and they regularly hosted her for dinner. Fred dropped by frequently to visit, and he drove her to appointments. Linda, who lived and worked in Dallas at the time, monitored her mother’s finances and visited when she could. The arrangement worked nicely. But tragedy struck when Fred unexpectedly died of an apparent heart attack in November 2002. Linda was numb with shock over losing her brother; Evelyn agonized over losing her son. “Shortly after my brother’s death,” Linda remembers, “Mom’s health began spiraling down, with short but strong recovery spikes and dips. Each health incident took its toll. “I found myself traveling more frequently from Dallas to Springfield, and initially these visits were a strain for both of us. Mom was a proud and independent woman who did not want to be a burden on anyone, including her daughter. And I was a lot like my mom when it came to pride and independence.” A strong mother-daughter connection prevailed, however, and the two women grew closer as they deepened the bonds of love, respect and admiration. Weakened by breathing difficulties, Evelyn nevertheless remained actively involved in her own care, including the well-researched decision to accept hospice services offered by Hospice Compassus. When her mother’s condition worsened, Linda relied on hospice and in-home caregivers for support. Determined to spend as much time as possible with her mother, she used the Family and Medical Leave Act to secure her job while she cared for Evelyn. She slept on an air mattress in her mother’s studio unit and was available 24/7, leaving only to run errands. She introduced new and effective ways of communicating with her mother, whose hearing ability was severely limited. “On one occasion,” Linda recalls, “I
clicked on the keyboard for her to read this message on the monitor: ‘I’d give anything, short of my soul, if you could hear me and we could have a conversation.’” Linda called me to her mother’s bedside shortly after Evelyn took her last breath. We cried together, and we laughed remembering her quips about death: “You never see a hearse followed by an armored truck filled with money!” and “Live, learn, die, and forget it all!” Always organized and focused, Linda has drawn helpful conclusions from the end-of-life experiences she shared with her mother. “Advocacy, advocacy, advocacy is like location, location, location is to real estate: It is the ultimate defining position of care-giving,” Linda asserts. “After love, advocacy was the greatest gift I believe I gave to my mom.” Linda was steadfast in organizing her mother’s affairs into one three-ring binder that included medical, financial, legal and miscellaneous information – all in great detail. Although Linda, like many others, embraced the role of caregiver, she admits that it can be as difficult as it is rewarding. Her suggestions: “Reach out to family for support in all aspects. Tap every resource available for a better understanding of the medical and caregiving communities. Be present with your loved one; leave your troubles at the door. And take care of yourself so you will be fresh and alive to meet the challenges of each day.”
Celebrating Compassion Every Day Hospice Compassus: Founded on Compassion, Integrity and Excellence Compassion A hospice nurse was recently asked, “How can you work in hospice? It must be so sad!” She answered, “I love providing highly skilled, compassionate care because I know I make a huge difference in the quality of a person’s life. Hospice isn’t about dying but about living as fully as possible despite a life-limiting illness. I love that I can use my training as a nurse to bring comfort and dignity to my patients, and I love seeing the relief on their faces and on the faces of those who care for them. I love being a part of a professional hospice team that works together to offer individualized, holistic care to families when it is critically needed. I love that I can offer practical solutions to patients and families during some of life’s most challenging moments.” She went on to speak about the years before she was a hospice nurse, and how she had experienced the compassion and support of a local hospice when her mother was terminally ill. She closed by saying, “We cannot change the reality of our patients’ conditions, but we can certainly impact their experience. What my mother’s caregivers did made me want to be a hospice nurse.” “Aunt Mary shares wonderful pictures of when she was young, having fun and laughing. It was sad to hear that she needed hospice care. I have come to know the Hospice Compassus staff and appreciate that they help her still love life. As she grows more frail, I am comforted by the quality of care she receives, and I know, too, that hospice will be there for my family and me. Even when Aunt Mary is not.” – Michael Tomlin
By Margaret Carlson, R.N. Executive Director Galesburg/Peoria, Illinois
Reprinted with permission from 50+ News and Views Magazine
Integrity The second value of Hospice Compassus is Integrity, rooted in the commitment to hold a firm and unwavering adherence to codes and regulations. Every Medicare Certified hospice provider must adhere to both state and federal regulations, which are monitored by external surveys for compliance. Beyond the requirements of external oversight, Hospice Compassus assures compliance and quality are achieved and maintained through voluntary internal regulatory oversight. Adherence to this higher standard of practice is monitored and enforced by a team of clinical and compliance professionals. As Executive Director for Hospice Compassus in Illinois, I have comfort in knowing Hospice Compassus is committed to providing the best hospice care, with regulatory compliance at the basis of our success. It is even more impressive that Hospice Compassus anticipates the changing needs of healthcare and implements programs to support quality beyond the requirements, further demonstrating the integrity of our leadership. Along with Dr. Carl E. Strauch, M.D., Hospice Medical Director, and Dr. Ed Rufus, M.D., Associate Medical Director, I provide oversight of Illinois’ Quality Assurance and Performance Improvement initiatives, including the most recent quality initiative: Keeping the Promise 2012. During a recent National Medical Directors Meeting in Scottsdale, AZ, the details of this program were released to Hospice Compassus leaders from across the country. “Keeping the Promise 2012” is a commitment to deliver the highest possible quality care to hospice patients in Illinois and all across the United States. Former Sen. William “Bill” Frist, M.D., delivered the keynote address at the event, joining some of the nation’s most recognized and influential hospice and palliative care physicians in supporting the Initiative. The Centers for Medicare & Medicaid Services
It takes a team – medical directors, nurses, hospice aides, chaplains, social workers, bereavement counselors and office staff working together with heartfelt compassion – to set our standards.
is scheduled to release a set of hospice quality measures in 2012, and hospice programs will be required to publicly report on the measures in 2014. Hospice Compassus has voluntarily tracked its own quality data since January 2011; because of this the company will be able to report on a full three years of meaningful quality data by the time other hospice programs are required by CMS to begin their reporting. Excellence The primary quality indicators in “Keeping the Promise 2012” are patients’ pain levels and the education they receive regarding medication, treatment and symptoms. Hospice Compassus is tracking these and other indicators to measure its performance against self-imposed quality standards. “Hospice providers serve in a clinical and compassionate role that is very important yet drastically underutilized in the continuum of care. All healthcare is about helping those in need, and hospice and palliative care alleviates suffering and improves the quality of life,” said Dr. Carl E. Strauch, M.D., Hospice Compassus Medical Director. More than 1 million people in the U.S. receive hospice care each year, although as many as 50 percent of those who have the option of hospice care never access the benefits. A study of the end-of-life experiences of those not utilizing hospice reported that 40 percent of patients were in severe pain prior to their deaths, and 25 percent experienced moderate to great anxiety or depression before they died. We will continue delivering the most compassionate care to patients and their families; and by measuring our quality, we will improve our service here in Illinois and set a new standard for all hospice providers across the U.S. That is what “Keeping the Promise 2012” is about. That is what we are going to achieve. The Local Hospice of Choice Local Hospice Compassus teams provide hospice services to Peoria and eighteen surrounding counties. Patients and families are comforted, knowing that their care providers are familiar with and have connections to their local communities and cultures. The Illinois program has
office locations in Peoria and Galesburg to ensure efficiency for supply availability, team communications and supervisory oversight. Hospice Is Patient Driven While using the services of Hospice Compassus, each patient and family have access to the team 24 hours a day. Upon admission, each patient is assigned a team composed of his or her attending physician, hospice physician, registered nurse case manager, hospice aide, chaplain, social worker, dietician, volunteers and bereavement coordinator. The hospice team collaborates with the patient and family to design a plan of care based on a comprehensive assessment of the patient’s needs. Ami Keller RN, Director of Clinical Services, explains: “In hospice care the patient and loved ones help the team understand their wishes, and we as the care providers help develop a plan to ensure those needs are met.” The team of professionals understands that every patient is unique, with his or her own special needs. As an example, some patients may prefer to tolerate a degree of pain in order to be more alert, while others may choose to work with the physician and nurse to adjust medications and eliminate their physical pain entirely. Hospice nurses walk this journey daily with their patients and develop a very close understanding of the family. Even after normal business hours and on weekends, there are designated nurses to respond to calls for support or to make visits based on changing patient and family needs. Hospice Is Support for the Survivors After a patient dies, the hospice team
continues to have contact with the family and other loved ones. Hospice Compassus offers a comprehensive bereavement support program, led by the Bereavement Coordinator. Bereavement services are part of the Medicare benefit for hospice and are provided at no cost. Bereavement support is as individualized as the patient care is. In some cases the Bereavement Coordinator will meet individually during the healing period, while other family members find group settings most helpful. Bereavement support groups are offered throughout the communities we serve. In addition to counseling and personal support, Hospice Compassus provides written support materials such as books, newsletters and personal written correspondence to the bereaved. Periodically throughout the year, memorial services are scheduled to honor those we have served and provide another means of support through the healing journey. If you or someone you know is in need of grief support, we encourage a call to the local Hospice Compassus office for written materials or to speak with our Bereavement Coordinator.
Hospice Compassus is a family of communitybased hospices. Our nationwide network is a vast resource, benefiting both patients and families. Hospice Compassus has a common culture around three core values: compassion, integrity and excellence. Our primary goals are to provide the highest quality hospice care and services in every community in which we operate, and to be both the hospice provider of choice and the hospice employer of choice.
Welcome! By Jan Shaffer
Sr. Human Resources Consultant Brentwood, Tennessee
elcome to our newest group of Colleagues, the 45 folks on staff at Harmony Hospice in Pittsburgh, PA, who came on board in January. Harmony was created by two doctors, Keith Lagnese and Dan Erlanger, in 2004. We are pleased that the founders will continue to serve as the local Medical Director and Associate Medical Director, respectively; and both have joined the Hospice Compassus Medical Directors Advisory Council. Our latest addition has a strong history of growth, having averaged 18 percent a year over the past five years. From 2010 to 2011 their average daily census increased by 25 percent, with no change in the geographic service area – quite an accomplishment! In fact, in 2010 they became the second largest provider in the area. Another highly successful aspect of this program is their foundation, which was begun in the fall of 2007 and has sponsored an annual golf outing for the past four years. Last year’s event raised over $40,000 in net revenue, with the proceeds being used most frequently for funeral expenses;
Doug Suttner, Executive Director
assistance has also been provided for utilities, housing, and additional non-hospice patient needs. The foundation has even enabled out-of-state families of indigent patients to fly back for final visits with their loved ones. There are a couple of other very interesting things about Harmony. They are housed in a pre-Civil War house that has a (now closed) passageway in the basement and is believed to have been part of the Underground Railroad. And as Doug Suttner, Executive Director, says, “We’re a fertile group – 6 percent of our current staff is pregnant!” Again, Hospice Compassus proudly welcomes Harmony to the family!
In Memoriam O
ur beloved volunteer, Jada Baxter, died on Wednesday morning, Feb. 22, 2012. She had been a Hospice Compassus volunteer in Columbia, TN, since March 2009. Quietly coming through our doors five days a week for four hours a day, she assembled admission and bereavement packets and performed varying duties for our Columbia and Tullahoma agencies. She was quick to smile and eager to help. She gave us more than 2,100 volunteer hours! Jada leaves behind four children and many family members. Hospice Compassus will accept donations to be used on her family’s behalf. Jada will be sorely missed by all who knew her. – Julia Logan-Mayes, Volunteer Coordinator C olumbia /T ullahoma , T ennessee everyday COMPASSION
LOCATIONS 1225 Hancock Road, Ste. 200 Bullhead City, AZ 86442 (928) 763-6433
3212 Industrial St. Alexandria, LA 71301 (318) 442-5002
1675 E. Monument Plaza Circle Casa Grande, AZ 85122 (520) 421-7143
8704 Jefferson Hwy., Stes. B & C Baton Rouge, LA 70809 (225) 768-0866
1000 N. Humphreys St., Ste. 220 Flagstaff, AZ 86001 (928) 556-1500 1789 W. Commerce Drive Lakeside, AZ 85929 (928) 368-4400 511 S. Mud Springs Road Payson, AZ 85541 (928) 472-6340 3033 N. Windsong, Ste. 205 Prescott Valley, AZ 86314 (928) 775-0103 70 Bell Rock Plaza, Ste. A Sedona, AZ 86351 (928) 284-0180 1025 W. 24th St., Ste. 15 Yuma, AZ 85364 (928) 344-6100 755 N. Henderson St. Galesburg, IL 61401 (309) 342-3007 2000 W. Pioneer Pkwy., Ste. 24 Peoria, IL 61615 (309) 691-0280 4506 Chadwick, Ste. A Cedar Falls, IA 50613 (319) 291-9000 610 32nd Ave. SW, Ste. F Cedar Rapids, IA 52404 (319) 362-2500 1850 East 53rd St., Ste. 1 Davenport, IA 52807 (563) 359-3666 200 East Centennial, Ste. 9 Pittsburg, KS 66762 (620) 232-9898
1438 South College Road Lafayette, LA 70503 (337) 235-8690 2213 Justice St. Monroe, LA 71201 (318) 322-0062 2424 Edenborn Ave., Ste. 230 Metairie, LA 70001 (504) 834-1655 770 Gause Blvd., Ste. C Slidell, LA 70458 (985) 639-8000 30665 Northwestern Hwy., Ste. 150 Farmington Hills, MI 48334 (248) 355-9900 140 North 5th McComb, MS 39648 (601) 250-0884 725 Front St. Ext., Ste. 850 Meridian, MS 39301 (601) 483-5200 300 Highland Blvd., Ste. G Natchez, MS 39120 (601) 442-6600 141 Highway 90 Waveland, MS 39576 (888) 667-2796 3044 Shepherd of the Hills Expy, Ste. 200 Branson, MO 65616 (417) 335-2004
Columbia, MO 65201 (573) 443-8360 600 Monroe St., Ste. 100 Jefferson City, MO 65101 (573) 556-3547 2650 E. 32nd St., Ste. 100 Joplin, MO 64804 (417) 623-8272 816A West 12th St. Lamar, MO 64759 (417) 682-3809 707 E. Briggs St., Ste. B Macon, MO 63552 (660) 385-4400 845 Highway 60, Ste. A Monett, MO 65708 (417) 235-9097 807 N. Main, Ste. 1 Mountain Grove, MO 65711 (417) 926-4146 4681 Osage Beach Pkwy., Unit 16 Osage Beach, MO 65065 (573) 348-1566 270 Chestnut St. Osceola, MO 64776 (417) 646-2650 1465 E. Primrose Springfield, MO 65804 (417) 882-0453 1406 Kentucky Ave., Ste. 100 West Plains, MO 65775 (417) 256-4127 6000 Uptown Blvd., NE, Ste. 104 Albuquerque, NM 87110 (505) 332-0847 711 N. York Road, 2nd Floor Willow Grove, PA 19090 (215) 659-5920 Harmony Hospice
811 Washington Road Carnegie, PA 15106 (412) 276-4700 1923 E. Main St. Duncan, SC 29334 (864) 542-2536 1412 Trotwood Ave., Ste. 5 Columbia, TN 38401 (931) 381-4090 1805 N. Jackson, Stes. 5 & 6 Tullahoma, TN 37388 (931) 455-9118 1717 N. IH-35, Ste. 130 Round Rock, TX 78664 (512) 246-7127 12222 Merit Drive, Ste. 1240 Dallas, TX 75251 (972) 690-6632 1770 St. James Place, Ste. 330 Houston, TX 77056 (713) 850-8853 901 North McDonald, Ste. 200 McKinney, TX 75069 (972) 548-1600 7001 Boulevard 26, Ste. 500 North Richland Hills, TX 76180 (817) 590-9623 4949 Fairmont Pkwy., Ste. 300 Pasadena, TX 77505 (281) 487-3453 4204 Woodcock Drive, Ste. 240 San Antonio, TX 78228 (210) 731-0505 120 Shaker Lane Princeton, WV 24740 (304) 431-2000 66 Elkins St. Welch, WV 24801 (304) 436-2300
3050 I-70 Drive SE, Ste. 100 THIS PUBLICATION IS SPONSORED BY:
HOSPICE COMPASSUS 12 CADILLAC DRIVE, STE. 360 BRENTWOOD, TN 37027 (615) 377-7022
Email: marketing @ hospicecom.com
Ask the Experts
of my husband Q: Iwhotakehascaresevere cirrhosis of
the liver, and I would like to have hospice come and help us, but I We have the don’t know how to bring it up with ABOUT HOSPICE answers for you. his doctor. My sister told me the doctor will bring it up when the My Dad has been sick for a “Your father does not have time is right. I don’t know if the long time, and recently my time is right or not, but I could to give up his attending neighbor suggested that he might sure use help from hospice. Is it physician in order to benefit from hospice care. I have okay for me to bring up the subject? receive hospice services.” heard that hospice has its own It is very acceptable for you to open doctors, and although I have heard Because of this, some attending physicians the discussion about hospice with a lot of good things about hospice request that the hospice medical director your husband’s physician. Although Medicare care, my dad doesn’t want to give provide care for the hospice patient in the up his doctor to go on hospice. areas of pain and symptom management—in Hospice guidelines define when it is appropriate to admit someone with your husband’s Does he have to give up his family this case, the attending physician and hospice diagnosis, it is not up to the patient or family doctor to receive hospice care? Medical Director work together to care for the to figure out when that is. The physician and
Your father does not have to give up his attending physician in order to receive hospice services. Attending physicians have an important role in the care of hospice patients; in fact, Medicare and Medicaid regulations require that a patient’s attending physician certify patients as hospice eligible, along with the hospice Medical Director. Hospice Medical Directors do not assume the role of the attending physician unless the patient or the attending physician requests that such a switch take place. Hospice Medical Directors are highly skilled physicians; many are board-certified in Hospice and Palliative Care, and many more have years of experience in caring for hospice patients.
Have a question about hospice? We want to hear from you!
patient. Hospice Medical Directors have a crucial role in leading the hospice interdisciplinary team and are valued by the hospice and by Medicare for their expertise. In fact, Medicare requires that hospice Medical Directors or hospice Nurse Practitioners visit with a patient intermittently during hospice care to help the hospice team determine if a patient remains eligible for hospice services. Attending physicians and hospice Medical Directors have active roles in caring for hospice patients. The hospice will communicate with both in the care of the patient, and having both physicians involved often helps ensure that the patient is getting the best possible care at this important time.
hospice can work together to figure that out. Physicians are very skilled in taking care of sick patients and helping them return to a state of wellness; however, when a patient cannot be cured, and continues to decline as a result of the illness, physicians may not think of hospice, even when the time is right. Physicians are trained to focus on healing, and they want very much to help the patient get better. To talk to your physician, it is often helpful to ask directly what the doctor reasonably expects to happen next. Physicians may be uncomfortable trying to answer the “How long does he have to live?” question, but they are very open to the, “What do you expect to happen next?” question, or the “What is the normal course of this disease?” question. It is also helpful to talk to the doctor about the help you need taking care of your husband, and ask if your husband would be eligible for hospice services. You might find that the physician appreciates your bringing it up, as it helps the physician better understand what you want to know. If you are still uncomfortable bringing up the subject with the doctor, you can contact the hospice directly. Hospice will call your husband’s physician to discuss whether your husband is eligible for hospice services. While on hospice service, the hospice will continue to work with the doctor to take care of your husband as the focus of his care shifts from healing to helping and comfort.
Send your questions to the editor, Brooke Legnon, by email to firstname.lastname@example.org or mail it to Hospice Compassus, 12 Cadillac Drive, Suite 360, Brentwood, TN 37027.