Ethics in Liver Transplantation Resident’s Lecture 15 June 2010 Paul H. Hayashi, MD, MPH Patient Summaries WD CN JU CB KN 57 yo female with HCV after raped and transfused 26 yo male, school teacher, Tylenol OD. 18 yo male, student, ?Tylenol mishap with psych and drug use history 32 yo male, prisoner with genetic liver disorder 73 yo woman with reaction to herbal product; functional and working U.S. liver transplant list Scarcity of Donated Livers Figure 1 20000 18000 16000 14000 12000 patients 10000 listed deaths OLT 8000 6000 4000 2000 0 91 94 97 year 2000 2003 Liver Transplant Allocation 101 Patients prioritized by MELD score: Model of End-stage Liver Disease Based on 3 lab values • INR, creatinine, bilirubin Entered into formula to give score Whole numbers from 6 to 40 • 6 = normal person • 40 = 3-4 week mortality approaches 100% Unique Factors in Transplantation Real time triage & allocation of scarce resource Few other examples in US medicine • Mass casualty/combat field medicine • Vaccine shortage Unique stakeholders Donor (deceased or living) Donor family or loved ones Potential donors: general public Ethical Principles Beneficence: doing good Non-malfeasance: avoiding harm Autonomy: respecting patient decisions Justice: fairness Utilitarianism Communitarianism Justice Webster’s definition: the quality of being just, impartial, or fair (the principle or ideal of just dealing or right action) Various forms of justice To each according to need. • Who is most in need? To each according to fair share. • What constitutes fair share? Justice In western, democratic societies, the rights of the individual is emphasized. Personal freedom and choice valued. The individual most likely to die is most in need. Each individual should have fair and equal claim. Example: At same MELD, 28 year old with Wilson’s disease and 60 year old with chronic hepatitis C use have equal listing and chance at transplant. Utilitarianism Webster’s Definition: a doctrine that the useful is the good and that the determining consideration of right conduct should be the usefulness of its consequences; specifically : a theory that the aim of action should be the largest possible balance of pleasure over pain or the greatest happiness of the greatest number. Communitarianism A counterbalance to western, individual primacy based theory of justice. Justice and individual rights and freedoms must be couched in the society in which they are rendered and reside. “…our interest in community may…conflict with our vital interest in leading freely chosen lives, and the communitarian view is that the latter does not automatically trump the former in cases of conflict.” • Stanford Encyclopedia of Philosophy (http://plato.stanford.edu/entries/communitarianism) Accessed 10/19/09 Communitarianism An organ is a uniquely precious community resource: Ironic: donated in the midst of community loss Immediate: allocation decisions made in 1-3 hours. Tangible, living tissue • unlike health care spending bills or prosthetics Honored: donation viewed as “heroic” by community Should communitarian ethics have more sway? Perhaps, the 28 year old with Wilson’s, father of three, and gainfully employed should go ahead of the 60 year old, former IV drug user, loner, on disability with hepatitis C, even though their MELD scores are equal. Patient Summaries WD CN JU CB KN 57 yo female with HCV after raped and transfused 26 yo male, school teacher, Tylenol OD. 18 yo male, student, ?Tylenol mishap with psych and drug use history 32 yo male, prisoner with genetic liver disorder 73 yo woman with reaction to herbal product; functional and working Case: CB 32 yo man with cirrhosis due to non-HFE iron overload • Encephalopathy, ascites • MELD 22 In prison since age 18 murder with 7 years left on sentence. (+) drug use at time of incarceration. (+) opiates at clinic visit--? Source Father petitioning Gov. Perdue for early releast based on medical need. Case: CB Patient seen in Hepatology Clinic and denied transplant evaluation based on drug history. X-jade suggested Not seen again in UNC clinics Admitted to UNC with worsening liver failure and dies 1.5 years after initial evaluation by UNC Hepatology Policies of US transplant programs regarding liver transplantation in prisoners Fix OK et al. Hepatology 50:338A 2009 (abs.) Liver failure on the rise amongst prisoners HCV rate 10x the general population Survey of all 104 programs 67 responded Over the last 5 years • 46 (69%) evaluated at least one prisoner • 17 (25%) listed at least one prisoner • 12 (18%) transplanted at least one prisoner Background 1960’s: shortage of dialysis machines “God Squads” 1973: Setion 2991, Social Security Amendment: Medicare covers dialysis 1976: Estella vs. Gamble Secured medical are to inmates under the 8th amendment. By LESLEY OELSNER December 1, 1976, Wednesday WASHINGTON, Nov. 30 The Supreme Court ruled today that "deliberate indifference" by prison officials to serious medical needs of an inmate violates the Eighth Amendment ban against cruel and unusual punishment and gives the inmate ground to sue the officials in Federal court Inmate Fears Death Because Prison Won't Finance Transplant By GINA KOLATA Published: February 5, 1994 “…Should the nation provide expensive care and scarce organs to convicted felons? Can it justify a system in which an estimated one in four employed Americans cannot have a transplant because they are uninsured or underinsured, yet ask the Bureau of Prisons to provide them for prisoners? …” “…Dr. Arthur Caplan, director of the Center for Bioethics at the University of Minnesota, …said "For me, it's open and shut….It's absolutely wrong to make judgments about past behavior, criminal conduct, moral worth, indictments, charges or convictions." Inmate Fears Death Because Prison Won't Finance Transplant By GINA KOLATA Published: February 5, 1994 “…Ethicists and the public eventually found it so distasteful to rate the worthiness of a human life that, Dr. Dubler said, "the clear movement since then has been to establish rigorously abstract criteria so that the worth of an individual is not factored in" when deciding who should get organs or other lifesaving medical treatments…” SHOULD A CRIMINAL RECEIVE A HEART TRANSPLANT? MEDICAL JUSTICE VS. SOCIETAL JUSTICE LAWRENCE J. SCHNEIDERMAN AND NANCY S. JECKER Departments of Family and Preventive Medicine and Medicine, University of California, San Diego, School of Medicine, La Jolla, California 92093-0622, U.S.A. Department of Medical History and Ethics, University of Washington, School of Medicine, Seattle, Washington 98195, U,S.A. Theoretical Medicine 17: 33-44, 1996 Two fields of justice defined in opposition: Medical Justice • Hippocratic oath Societal Justice • “decent” and “rudimentary” levels of health care Medical justice argues for transplanting prisoners “I swear … to follow the method of treatment which, according to my ability and judgment, I consider for the benefit of my patients.” • Hippocratic Oath Arguments against bedside “rationing” Risk of error, inconsistency, being hidden and manipulated. Undermines patient trust in physicians Society at large has the “mandate” to decide Physicians not equipped to “do it right.” Schneiderman et al. Theorectial Medicine 1996 Societal justice and transplanting prisoners Schneiderman LJ et al. Theorectial Medicine 1996 Prisoners should not be punished again by denying health care, but… “What level of health care are we talking about anyway?” Is the prisoner a full member of society still? Would a “decent minimum” only be fair. • e.g. Illegal immigrants are largely not included in the current health care debate—they will likely stay at a “rudimentary minimum”. What did the authors conclude? Society will have to decide Suggested two lines be drawn: The limits of a “decent minimum” of care. • Treatments that may ‘harm’ others by deprivation (e.g. transplant perhaps should be excluded. The level of criminal offense • Heinous crimes may only be entitled to the “decent minimum” of care only. Schneiderman LJ et al. Theorectial Medicine 1996 Moving Forward “The hottest places in Hell are reserved for those who, in a time of moral crisis, maintain neutrality.” • The Devine Comedy (The Inferno). Dante Alighieri Have we let the courts decide for us? “Physicians cannot avoid taking responsibility for stewardship over organ allocation and must play a primary role…” • West JC, et al. Seminars in Dialysis, 2003 More to the point… If confronted with a convicted murderer in for life needing a transplant, what will I do? Legally we are bound to evaluate (w/o societal justice or value in mind), list if appropriate and transplant when able. Is there a fundamental ethical norm or stance to NOT transplant? If so, is it strong enough to stand in the face of individualism? The Underpinnings of Western (democratic) Individualism Emanual Kant The “original position” (1781) John Rawls The “unencumbered self” • Equal basic liberties for all • Only those social and economic inequalities that benefit the least advantaged members of society. Lines up well with basic tenets of the Hippocratic Oath Communitarianism A counterbalance to western, individual primacy based theory of justice Justice and individual rights and freedoms must be couched in the society in which they are rendered and reside. “…our interest in community may…conflict with our vital interest in leading a freely chosen lives, and the communitarian view is that the latter does not automatically trump the former in cases of conflict.” • Stanford Encyclopedia of Philosphy (http://plato.stanford.edu/ accessed 10/10/2009). Unusual Features of Transplant Triage based on medical and societal justice Few other examples in US medicine • Mass casualty/combat military medicine • Vaccine storage • “Orphan diseases” Unique stakeholders • • • • Donor (deceased or living) Donor family or loved ones General public (donor pool) Transplant team Communitarianism and Transplant An organ as a unique community asset: • Irony: donated in the midst of community loss • Honored: donation viewed as heroic and highly valued “organs procured within a community should be considered assets of the community…” • Resolution 8, 1st International Congress on Ethics in Organ Transplantation Should communitarian ethics have more sway? What would the “orignial position” say about this conflict? “The question of whether or not Mr. Murphy is entitled to a heart transplant then becomes generalized as: If I were to enter a society in which certain life-saving medical treatments were limited, would I want persons who have already taken benefits away from those who have attempted to live justly to be eligible for further benefits, such as these limited treatments? It is hard to imagine that persons in an original position would answer affirmatively.” Schneiderman et al. Theorectial Medicine 1996 (italics and underline added) Equal or Fair? “We have always had this idea, which is simplistic, that justice requires treating everyone, everywhere exactly the same way. Justice requires no such thing [but] simply requires us to treat people fairly.” • Ezekiel Emmanuel, Chief of the Bioethics Branch, NIH, New Yorker, 2003. Hippocratic Oath “I will apply, for the benefit of the sick, all measures that are required.” However, this phrase should not be misused as a shield behind which we shirk societal responsibility because… “I will remember that I am a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.” • Quoted phrases from Hippocratic Oath – Modern Version by Louis Lasagna, Academinc Dean of the School of Medicine, Tufts University, 1964. • Unquoted phrase and italics by Paul H. Hayashi, MD, MPH Looking East Confucianism Social order and self-discipline are valued “men are responsible for their actions and especially for the treatment of others” “..we learn the value of social strictures that make an orderly society possible.” • Stanford Encyclopedia of Philosphy (http://plato.stanford.edu/ accessed 3/7/2010). From the web... Newsletter China’s Grim Harvest Page last updated at Apr 13:32 ByBBC Andrea Gerlin Sunday, 23,GMT, 2006 Wednesday, 26 August 2009 14:32 UK May/June 2007 * Volume Number 4 China's President isn't used to being heckled. But last Thursday, as 13 Hu *Jintao addressed reporters at the White House during his U.S. visit, a woman from a newspaper by the meditation sect Falun Gong loudly interrupted him, calling him Dr. run Jeffrey Crippin’s AST Presidential Address ewsletter a "murderer" and threatening that his days were numbered. Among other allegations, China admits deathisrow organ China executes morehospitals people than any other nation. Falun Gong, which banned in use. China, accuses Chinese of harvesting China is trying to away from the use of executed prisoners as the “The use ofmove donor organs from executed prisoners is major organs from executed prisoners — including some of the sect's own members — source of organs for transplants. and selling them for transplants. deplorable practice. As a society and as a field, we N should do whatever we can to prevent such atrocities.” http://www.time.com/time/magazine/article/0,9171,1186533,00.html#ixzz0hVS2DLLb (accessed 3/7/2010) http://www.bbc.co.uk/ What side of the slippery slope are you on, anyway? Are you crazy? Giving precious 您是否是疯狂的? 给珍贵的器 organs to convicted 停止那! murderers? 官被判罪的凶手? Stop that! Are you crazy? Executing prisoners for organs? Stop that! Patient Summaries WD CN JU CB KN 57 yo female with HCV after raped and transfused 26 yo male, school teacher, Tylenol OD. 18 yo male, student, ?Tylenol mishap with psych and drug use history 32 yo male, prisoner with genetic liver disorder 73 yo woman with reaction to herbal product; functional and working What would Spock and Kirk say? “the needs of the many outweigh the needs of the few.” • Capt. Spock in “Wrath of Khan” – 1982 “Because the needs of the one … outweigh the needs of the many…” • Adm. James T. Kirk in “The Search for Spock” -- 2004 Utilitarianism Outcomes of a transplant are emphasized. Maximizing quality life years gained. Goal: transplant those most likely to die and have long quality life afterwards. Example: Transplanting a 28 year old with Wilson’s disease over the 60 year old with chronic hepatitis C, despite equal MELD. Five Cases for Discussion All cases are true and were seen by the University of North Carolina Liver Transplant Center in the last 3 years. Case 1: WD 57 yo woman. Raped and impregnated by that rape at age 29. Required several units of blood during therapeutic abortion. Acquired chronic hepatitis C from transfusion. Now cirrhotic with signs of liver failure. MELD 12-15; (+) ascites; (+) encephalopathy Married x 36 years; two children; worked up till recently; husband very supportive. Non-smoker. No alcohol whatsoever. Case 2: CN 26 yo man took Tylenol overdose after break up of a relationship. Able to get a reasonable psychiatric evaluation. Patient expresses tearful regrets over his action prior to going into coma Up and coming teacher, cited by his school for most improvement in his class of low socioeconomic and low achieving grammar school students. Strong testimonials of support from colleagues, friends and family. No prior psychiatric history or suicide attempts. Case 3: JU 18 yo student with ?therapeutic mishap: Tylenol overdose for an unrelenting headache, but took all 37 tablets over an hour or less. Claims no suicidal intent. Acute liver failure; mental status: sleepy but awakens and conversant. (+) history of attention deficit disorder, depression and ?bipolar affective disorder. (+) for cannabis use; denied any other drug use history. Father is security guard and quite supportive. Case 4: CB 32 yo prisoner in since age 18 for murder; 8 more years on sentence. Non-HFE related hemochromatosis cirrhosis Ascites, encephalopathy, varical bleed, ascites. MELD 22; Childs B/C (+) drug abuse just prior to incarceration. Father strongly advocating for early release and transplant; petitioning the governor. Case 5: KN 73 yo Viet Namese woman with longstanding HCV cirrhosis. Stable until took Chinese herbals that give her acute liver failure (ALF)—oddly she is HCV RNA negative with this ALF flare. No comorbidities whatsoever; excellent functional status; working full time at TJ Max. No alcohol or drugs Widowed but lots of family around in support. Patient Summaries WD CN JU CB KN 57 yo female with HCV after raped and transfused 26 yo male, school teacher, Tylenol OD. 18 yo male, student, ?Tylenol mishap with psych and drug use history 32 yo male, prisoner with genetic liver disorder 73 yo woman with reaction to herbal product; functional and working Policies of US transplant programs regarding liver transplantation in prisoners. (abstract presented, AASLD, 2009) Liver failure on the rise amongst prisoners HCV rate 10x the general population Survey of all 104 programs 67 responded Over the prior 5 years: 46 (69%) evaluated at least one prisoner 17 (25%) listed at lese one prisoner 12 (18%) transplanted at least one prisoner. Final Discussion: Now that you’ve hear about and discussed all 5, Who would you not even list? • Explain to those denied why you are not going to list them. Of those you list, how would you prioritize assuming they all had equal MELD scores? • Explain to each patient why the certain person(s) is/are ahead of them in line. Ethical Principles Beneficence: doing good Non-malfeasance: avoiding harm Autonomy: respecting patient decisions Justice: fairness Utilitarianism Communitarianism