Family Centered Care-Current and Future Directions. Topic: Cost Effective Medical Care: What
are the Impediments? Prof. Faroque A Khan. MB(kmr), MACP. Director IMANA International Collaboration. IMC/IMANA Conference –Jeddah. KSA Dec 28-29 2014.Safar 6-7,1436.
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Introduction •
All mandates of Islam aim at preserving: – – – – –
Life النفس Faith الدين Mind العقل Possessions (money/wealth) المال Parentage النسب
Introduction •
Ultimately, cure is by Allah –
•
“And when I am ill, it is He (Allah) who cures me” Ash-shuraa, verse 80
Individual responsibility –
“On no soul does Allah place a burden greater than it can bear. It gets every good that it earns, and it suffers every ill that it earns” AlBakarah, verse 286
DYING CAN GET COMPLICATED- 1)Permanent cardiopulmonary death-cpd 2) CPD, possibly not yet permanent. 3)CPD with cessation of cellular activity. 4)Dead but mechanically functioning. 5)Brain death with no detected activity 6)Brain dead, but not entirely. 7)Life is gift from
Allah-God-and it is to be revered until it ends by itself—Soul & Body separation:Q 3:145- 39:42- 45:26-, 23:100
Grandma Martha’s Dilemma: Surveyed Cross Section of Community. 52 Responded.
Scholars, imams, MD, homemakers etc. 10 women and 42 men responded. 52% –prohibited, 33% OK,15%-no opinion. IMANA Newsletter: Vol XXIII, Issue 3.
Yes:-Milk-motherSurrogacy for ailment. No: Birthing mother(58:2)Adultery. Others: Get fatwa, Not a scholar, concerns regarding family dynamics.
EOLC--Costs Top 5% account for nearly half of
spending(>600 billion/yr). 17% of Medicare’s $550 billion annual budget spent on pt’s last six months. Early use of palliative care significantly reduces these costs. Big ticket items: Dialysis, ICU, Transplant, CV procedures and medications. NYT: January 10th 2013 & Nov 20, 2013.
Does Medical Care in USA Leave an Overall Financial Burden?
Medical Tourism-One Million Plus from USA in 2015.
Futile Care--? Rationing Definition: Prevalence: Few
Examples Q: “Dr K we both know “Joe’ is not going to make it, why not let him go in peace and save me from bankruptcy”. Terri Schiavo: PVS with TLC 24/7 for 10 plus years—cost $ million plus. AR: 90 yr old falls and breaks his neck – bill $478,000. Resource Allocation- Sharia Guidelines?
Futile Care: References. FK: JIMA 18:20.1986-Brain Death FK: Fordham
Law Jour. xxx Nov 2002 page 267-277—DNR & Bioethics. Badawi G, Smith F, Davidson, FK: Panel JIMA 43,113-133 Dec 2011. FK: JIMA (Ed) 38:6-9 March 2006-TS. Huynh TN et al: JAMA Sept 9, 2013-Futile Butler-K: Knocking on Heaven’s Gate: Book-Scribner Sept 2013.
WHAT IS FUTILE CARE? JAMA Sept 9 2013-Huynh TN DEF: 1)Burden> Benefit—58%
2)Treatment goals could never reach pt goals 51 % 3)Death imminent 37%4) Survival outside ICU not likely 36% 3month prospective study in five ICU’s. 1136 pts, 6916 assessed by 36 consultants.—80%appropriate care, 9% probably futile, 11% futile care.
FUTILE CARE-Contd. Six month mortality for the 123 pts who
received futile care was 85%, survivors quality of life very poor. Cost was 2.6 million $$ =9.75SR Suggest: Early transition to palliative care. NYT Wed Nov 20,2013-How Doctors Die. Identify FC in ICU-first step toward refocussing care on patients more likely to benefit.
What To Expect? Chest Vol 144, Nov 2013-page 1707-1709 Three Step Approach: 1) Physicians decide care is futile 2) Appropriate committee agrees. 3)Clinical outcome that often is, but not
always, pt death. Future futility guidelines need to incorporate prospective data on its appl. ATS, SCCM,ACCP, AACCN, ESICM preparing guidelines.
Source of Islamic Guidelines Quran—God’s commands. Hadith—Prophet Mohd.(pbuh)-words &
deeds. Ijma (Group consultation) Qiyas (Personal opinion) Other Sources.
What is Sharia? Shariah means a road—travel spiritually very quickly without accident. Operative formula by which Muslim determines what is good and ethical. Objectives: 1) Criminal law:—murder, larceny,libel etc 2)Family—Marriage, divorce, inheritance, custody, ?surrogacy. 3)Transactions-Property, contracts, gifts,
Sharia--Objectives Protection of life—Quran 5:32. Protection of religion Protection of property or wealth Lineage and offspring Protection of mind—sanity,
reasons/intellect.
Considerations
Inputs
Hurma
Maslaha
Courtesy of Dr. Aasim I. Padela apadela@uchicago.edu
Islamic ethico-legal deliberation
Courtesy of Dr. Aasim I. Padela apadela@uchicago.edu
Discursive Partners
Clinical Practice
Social Science
Inputs Islamic Law (fiqh, hukm)
An Islamic Bioethics
Medical Sciences
Moral Theology (usul al fiqh)
Ethics (Adab)
Philosophy & Bioethics Health Policy
Courtesy of Dr. Aasim I. Padela apadela@uchicago.edu
Does More Money Result in Better Care?
Medical Tourism-One Million Plus from USA in 2015.
EOLC—Shuttle Service?
Does Medical Care in USA Leave an Overall Financial Burden?
What Broke my Fathers Heart-NYT June 14,2010 by Katy Butler--1 85 male, retired professor, had stroke at
age 79, had some cognitive & mobility problems. Wife became constant caregiver, lost wt, became depressed. Jeff developed painful inguinal hernia, for long standing bradycardia, pacemaker was placed preop—wife consented.(Jeff had refused it a year earlier-overtreatment)
What Broke my Fathers Heart-NYT June 14,2010 by Katy Butler-2 Hernia was fixed. Pacemaker continued ticking over next few yrs. Jeff developed dementia, macular degeneration, and became incontinent. Wife wanted to have pacemaker deactivated. Family felt Jeff did not want to live in this state. Living will does not address dementia or pacemaker as life support.
What Broke my Fathers Heart-NYT June 14,2010 by Katy Butler-3 A)Should Jeff’s pacemaker be turned off? B)Who decides when pt is mentally incapable? C) Doctors are trained as healers, what responsibility do/should they have in presenting life sustaining versus alternative therapies?. D) Medicare rewards far better for doing procedures than for assessing whether they should be done at all.
Futile Care--? Rationing Definition: Prevalence: Few
Examples Q: “Dr K we both know “Joe’ is not going to make it, why not let him go in peace and save me from bankruptcy”. With Kay Butlers father it was the pacemaker they wanted removed which Cardiologists refused, in my case the patients wife wanted ventilator removed.
Islamic(Muslim) Physician What does it mean?. Birth.
Free Will. Predetermined life span. Book—Quran. Death. Afterlife. Accountabilty.( Key factor—Intention)
Guidelines:Sharia—Key Points
Necessity overrides prohibition. Harm to be removed Accept the lesser of two harms if both can not be avoided Public interest overrides the individual interest.
Ex:Starvation-Pork etc. Make things easier— combine hajj and umrah rituals—one intention-(niyyah). Use of scarce resources— ICU/transplant etc.
Key Questions @ EOLC Ventilatory Support.—Air. Hydration—Water Nutrition—Food. COST !!!!!.
Ethical Dilemmas Related to Terri Schiavo’s Health Care Ms TS: 26 female, suffered cardiac arrest on
Feb 25,1990. Remained in persistent vegetative state for 15 years. Died from dehydration on March 31,2005, two wks after court ordered removal of feeding tube.
Questions: Was TS condition hopeless? 2) Would she have wanted her feeding tube removed? 3) Who is responsible for the cost of care, estimated to be in millions. 4) Recommendations regarding—Vent support, Fluid, Nutrition in hopelessly sick pts. 1)
Health Care Costs? –Terri Schiavo Case. Who is responsible ? individual ? family ?
society Any religious guidelines? Khan F: JIMA Editorial: Vol 38(No 1) page 6-9, March 2006.
VENTILATION—FUTILE CARE NUMC EXPERIENCE. “Terminal Weaning”(Palliative) after
appropriate family and staff agreement. Thirty plus patients weaned “terminally” Three “survived” and transferred. Karnik A, Khan F: Ethical Issues in Ventilated Patients-Hospital Practice Nov 1997,43(11) 11-18.
EOLC--Costs Top 5% account for nearly half of
spending(>600 billion/yr). 17% of Medicare’s $550 billion annual budget spent on pt’s last six months. Early use of palliative care significantly reduces these costs. Big ticket items: Dialysis, ICU, Transplant, CV procedures and medications. NYT: January 10th 2013 & Nov 20, 2013.
AR: 90 yr old falls and breaks his neck –bill $478,000
The New York Review of Books: On Breaking One’s Neck-Feb 6,2014
Dr Relman- was a medical educator, researcher, author and editor of NEJM After a long and complicated 10wk
hospital stay, Dr. Relman realizes the importance of nursing care. “When nursing is not optimal, patient care is never good.” “Never before understood how much good nursing care contributes to patients safety and comfort, especially when they are very sick or disabled”
Futile Care--? Rationing Definition: Prevalence: Few
Examples Q: “Dr K we both know “Joe’ is not going to make it, why not let him go in peace and save me from bankruptcy”. Terri Schiavo: PVS with TLC 24/7 for 10 plus years—cost $ million plus. AR: 90 yr old falls and breaks his neck – bill $478,000. Resource Allocation- Sharia Guidelines?
TWO RECENT BEST SELLERS. 1)Butler K: Knocking on Heaven’s Door:
The Path to a Better Way of Death— Scribner 2013. Daughter describes her father’s EOL struggle. Fink S: Five Days at Memorial: Life and death in a Storm Ravaged Hospital— Memorial Hospital in New Orleans after Hurricane Katrina-Aug 2005
KATRINA—NEW ORLEANS: Dr. Anna Maria Pou—Labor Day Weekend-Aug 2005.
WHAT IF?—No Lights. No Heat. No Water: NYU-Sandy Oct 29/30/12
You were in a hospital in the midst of a natural catastrophe—hurricane, snow storm, sand storm and the power failed, and the heat climbed, all outside access was lost and you were providing care to very frail patients. How would you react ???. Memorial in New Orleans –Katrina Aug 2005. NYU-Langone in NYC—Sandy—Oct 29/30/12.
Health Care Costs; Federal-18% of GDP 2011-Medicare $554 billion—21% of total. Of the $554 billion
28% or about $170 billion on pts in last six months of life. Costs, Ethics & Concerns about EOLC will ensure continuing debate & scrutiny. Kais. Health News: June 4th 2013 Daily Report.
The Quality of Dying and Death: Outcome Measure ? If you can’t measure it, you can’t improve
it—Lord Kelvin. Not everything that counts can be measured. Not everything that can be measured counts: Albert Einstein. The Quality of Dying and Death—QODD? Chest: Editorial 143 Feb 2013-289-290.
Medical Advances & Cost. NYT Apr 6th 2014—”Paying Till It Hurts”
Paying Till it Hurts: New York Times Sunday April 6th 2014.
CONCLUSIONS Unique opportunity to fathom the treasures and secrets of God’s creation Along with it grave and unprecedented risks Nevertheless, since we do not will unless God wills, can these breakthroughs be regarded as part of the divine will to afford humanity yet another opportunity for moral training and maturity (TARBIYAH) in our quest for excellence (IHSAN). WASATHIYAH “Thus we have appointed you a middle nation, that you may be witness against mankind, and that the messenger may be witness against you …” 2:143
Pt & Family Centered Medical Education-AIM May 2014. Medical Education must change to better support the next generation of clinicians in partnering with patients, families and in collaboration with other disciplines. Combine science with the art of medicinecompassion, respect, collaboration. Pt’s voice reflecting his/her needs, preferences,goals,concerns Atul Gawande:“Best possible day”-NYT Oct 5,2014—Piano teacher and Sen Jacob Javits at QHC .
Patient Centered Medical Education-3 Need to develop &evaluate models for
how pt’s and families can be used effectively and successfully. Change culture of training environment. Emphasis on faculty development. Ex: Visiting Muslim female at NUMC in New York—cultural/religious/spiritual issues.
IOM Recommendations for EOLC. Illness towards EOL to be covered by
private and public insurance companies. EB standards for advanced care planning - by professional societies, also used for payment, licensing, credentialling. Standarized training requirements to be developed and implemented. Care standards coordinated across services using EMR etc etc.
Fiscal Toxicity as Side Effect. NEJM Oct 2013. Out of pocket expenses a serious
undisclosed toxicity from high cost drugs causing financial strain. Ex: Bevacizumab used for metastatic colorectal cancer, its addition to chemotherapy adds approx. five months. Ten month course costs approx. $44,000, medicare covers 80% and out of pocket cost $8,800. Do pts know this up front?.
Some Recommendations. Identify futile care pts, move to appropriate
low intensity care. Accountable Care Organizations, shift focus towards preventive care in high risk pts-family centered home visits, cell phones, vaccinations, EMR. Over five million Medicare pts served by 360 ACO’s with huge cost savings and better outcomes and fiscal reward for doc.
Recommendations(cont’d) Pay physicians to talk to pts about EOLC. Improve funding for step down services. Better training of young physicians in PC. Doctors become more courageous and
bolder in saying “NO” to some requests. Ask pts what specific goals they have and work towards making that possible-Sen. Jacob Javits, Prescribe Lucentis(2K) vs Avastin($50) for
Medical Futility-New Look at an Old Problem-. Reframe the debate—social contract
between medical profession and society. Professional guidelines, social advocacy, legislation and litigation. In democratic society develop a balance between patients and physicians perspective against a backdrop of societal constraints and values.ex: MV vs ECMO Misak C et al CHEST Dec 2014-1667-72.
Islam in America—History.
IMANA/IIIM Conference in India.
Does Medical Care in USA Leave an Overall Financial Burden?
EOLC—Shuttle Service?
Patients Eye View of Nurses-New York Times Feb 11,2014.
Does More Money Result in Better Care?
The New York Review of Books: On Breaking One’s Neck-Feb 6,2014
Dr Relman- was a medical educator, researcher, author and editor of NEJM After a long and complicated 10wk
hospital stay, Dr. Relman realizes the importance of nursing care. “When nursing is not optimal, patient care is never good.” “Never before understood how much good nursing care contributes to patients safety and comfort, especially when they are very sick or disabled”
Dr. Relman Comments.-NYT Feb 11,2014. “Nurses observations and suggestions have saved many doctors from making fatal mistakes in caring for patients. Though most physicians are grateful, few dismiss it—out of arrogance and a mistaken belief that a nurse cannot know more than a doctor.” “A growing movement demands coordination of the education of health professionals to prepare them to work smoothly in teams”.
Jeddah Floods-- Nov 2009. KAAU –Extensive Damage. Nov 25,2009. Two yrs rainfall in 4 hrsdeath, destruction-> billion riyals.
Natural Disasters. Pres. Bush: “The worst moment of my presidency�. Below: Hyatt Hotel in New Orleans.
Hurricane Katrina-Aug 2005. Abdulrahman and Kathy Zeitoun’s –Jihad—during Hurricane Katrina. Tragedy of Katrina. Post 9/11 life for Arabs/Muslims. Xenophobia and Racial Profiling. Beautiful nature of American multicultural society.
Hurricane Sandy—LI South Shore-Oct 2012.
Sandy-Oct 2012窶年Y.
TYPHOON- HAIYAN-Nov 2013
Jeddah Floods-- Nov 2009. KAAU –Extensive Damage. Nov 25,2009. Two yrs rainfall in 4 hrsdeath, destruction-> billion riyals.
Natural Disasters: Public Health: Leaning J, Guha-Sapir D, Nov 7 N Engl J Med 2013; 369:1836-1842 .
The effects of armed conflict and natural disasters on global public health are widespread. In the years ahead, the international community must address the root causes of these crises. Natural disasters, particularly floods and storms, will become more frequent and severe because of climate change. These events affect the mortality, morbidity, and wellbeing of large populations. Humanitarian relief will always be required, and there is a demonstrable need, as in other areas of global health, to place greater emphasis on prevention and mitigation.