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Legal and Ethical Aspects of Vital Organ Substitution

2000; Lippincott Williams & Wilkins; Volume: 46; Issue: 4 Linguagem: Inglês

10.1097/00002480-200007000-00001

1538-943X

Eli A. Friedman,

Ethics and Legal Issues in Pediatric Healthcare

An unanticipated consequence of Dr. Kolff’s invention, in 1944, of a technique for prolonging life after collapse of a vital organ system 1 was the absolute necessity to devise equitable means for its allocation. 2 Lessons learned while substituting for one vital organ might—at least in large part—be transposed to other organ systems. Examination of the legal and ethical ramifications of renal replacement therapy offers insight into what is to be expected when liver, heart, and lung substitution become routine medicine. Murray, Merrill, Hume, and Harrison’s demonstration of the feasibility of kidney transplantation in monozygotic twins in 1954, 3 followed by Scribner’s introduction of maintenance hemodialysis in 1960, 4 and Moncrief and Popovitz’s extension of long-term dialysis to peritoneal exchange 5 resulted in a menu of options—including that of no therapy—for previously universally fatal uremia. Deciding who with failed kidneys shall live, like awarding seats in Titanic’s lifeboats, generates apprehension, anguish, and anger. The legal and moral forces impinging on patients and their families, nephrologists, transplant surgeons, and society created a substantive database of precedents, court judgments, and moral pronouncements. 6 Ethical considerations in delivering renal therapy follow three main themes: Should dialysis or a kidney transplant be offered to every individual with irreversible renal failure irrespective of mitigating circumstance such as citizenship, age, mental incapacity, or severity of illness? Is the societal practice of prioritizing some kidney patients for a solid organ allograft or acceptance for dialytic therapy as “more equal than others” (rich, politically well positioned, religious consideration) just? Once begun, can renal replacement therapy be withdrawn (noncompliance, vegetative state, futile prognosis, irreversible psychosis)? Universal Provision of Uremia Therapy Although access to the pool of solid organ allografts controlled by the United Network for Organ Sharing (UNOS) is restricted to US citizens or Green Card holders, maintenance hemodialysis and peritoneal dialysis is regularly delivered to undocumented aliens. In New York City, Medicaid will support “emergency” but not “scheduled” dialysis for noncitizens, forcing the behavior pattern of performing repetitive “acute” dialyses, thereby disrupting emergency room function. A competent individual must not be forced to have a single unwanted venipuncture, radiograph, or procedure, including hemodialysis. Here, the patient’s physician leads the charge serving as an advocate and champion. Neither Ethics Committees nor hospital directors treat patients. At least for the present, that responsibility and honor are reserved for physicians. A derivative question that will arise in subsequent case discussions is whether an 84 year old should have been begun on maintenance hemodialysis. Setting an upper age limit for initiating dialytic therapy is not supportable by outcome-based trials though, as a generalization, few individuals older than 80 will achieve even marginal rehabilitation. Biologic aging cannot be ignored as a factor encroaching on the appropriateness or success of ESRD therapy. Recall James A. Michener, Pulitzer Prize winning author of “Tales of the South Pacific” and more than 40 other books with combined sales of more than 75 million, who developed uremia at the age of 87 and was started on hemodialysis treatments in Austin, Texas. Michener observed that: “A person on dialysis undergoes very heavy and irritating treatment and in time it seems more than you can bear. There’s always an easy out, just don’t go to the hospital. Then after two weeks, you’re dead.”7 At the age of 90, after three years of hemodialysis, Michener concluded: “For the first time I could understand how a person could say ‘the hell with it.’” Michener died three days after ordering his doctors to stop dialysis. 8 Consider an autistic adolescent or a vegetative individual after a failed surgical attempt to remove a brain malignancy. Focusing on the issue of whether a nonthinking, noncommunicating, but otherwise physiologically functional “person” manifesting ESRD should be initiated on life prolongation by maintenance hemodialysis (peritoneal dialysis or kidney transplant)? Put another way, can a physician, because of a patient’s psychiatric or organic brain debility, withhold any procedure, drug, or regimen (dialysis) likely to sustain life. For an adult patient, the court’s assignment of responsibility (right) to accept or refuse treatment is necessary before anyone may direct therapy for a mentally incompetent person. All of us know obviously psychotic people who walk the streets and function at a level that has not been brought to the court’s attention. Until an individual’s control has been removed, the physician is bound by the patient’s consent. This does not extend to requests that, as judged by the physician, are not in the patient’s interest. In practice, because of an ambiguous position taken by courts on both sides of the question, the practitioner can either be timid (declining action while calling for hospital administrators to make a binding decision) or “bold” (deciding to act without delay on the basis of intuition, personal values, and common sense). My own course is to neither start nor continue dialytic therapy for any patient lacking hope of becoming a functional person. Physicians have the right to accept or decline any patient. There are categories of patients (AIDS, gender, race, age) who, if refused consistently, would result in court cases won by the declined patient. By subsidizing medical schools, the federal government gains a voice in how the product of that school behaves in society. Physicians, in general, have to adhere to the standards of society in accepting and treating patients. Do some Patients Rank Higher than others for a Kidney Transplant or Dialysis? Our system of voluntary organ donation rests heavily on the general public understanding of fairness. Subverting equity in distribution of a scarce resource (kidneys) leads to further cheating, thievery, and perhaps even murder to gain organs. On the other hand, any experienced physician knows of the existence of VIP wards and luxurious accommodations for “important” politicians and celebrities in hospitals that receive public funds. If an alcoholic baseball hero with smoldering cancer is able to get a scarce liver in less than 24 hours, is the system fair? Starkly put, does being a US senator, athlete, or rock star carry the privilege of exceptional health services not open to a Medicaid patient? Without question, it does. Extend the query to ask whether there is any ethical difference between faster service by more renowned doctors because of fame, and accelerated provision of an organ allograft because of wealth? For the time being, the answer will have to be that that is the way it is in our society. In his masterpiece “Animal Farm,” George Orwell, speaking as a dominant pig, remarked that “some animals are more equal than others.”9 Again, finding the mark in “1984,” he projected a world in which a “Big Brother” government manipulated and contrived everyday, as well as life or death, existence. The present government regulated distribution of solid organs for transplantation fulfills some but not yet all of Orwell’s projections. Transplant surgeons coined the term “gaming the system” for schemes that defeat the strict order of UNOS allocation of organs. As an example, individuals with sufficient funds to travel widely can gain listing in multiple transplant regions, thereby increasing their chance of being selected somewhere. The poor cannot compete. Observation leaves no doubt that the famous and wealthy are “more equal” in attaining medical care, gaining a different level of medicine than the poor. Whether “privileged” by money or politics, those with power obtain quicker and more personally intense medical care than the general population. Sometimes, such perquisite is actually detrimental; for example, constant and exclusive care by Hitler’s doctor made him a drug addict, as was also true for Elvis Presley. Does any reader doubt that the Pope or the President of a nation would immediately be given first place on the organ allocation list? Perhaps the best portrayal of the current dilemma of seeking distributive justice for renal failure patients is that while no system is perfect, the present attempt at fairness is superior to any market driven anarchy. I believe this to be true. Must the Disruptive, Noncompliant Patient be Retained? Compliance is relative. Obese individuals do not comply with their physician’s dietary instruction, smokers smoke, and hypertensives do not take potency inhibiting drugs. The severity of noncompliance and its impact on other patients and a program’s ability to function are the factors that must be weighed. Disruptive patients can be discharged. There is a real difference between declining a proposed medication or procedure and being noncompliant. Patients have the absolute right to reject medical advice. Bear in mind that it is not a rare event for physicians to be wrong. The entire subspecialty of bloodless surgery was generated by patient refusal to accept transfusions on religious grounds. In an advisory bulletin to physicians, the American Medical Association counsel states: “The obligation to treat non-compliant patients should not be an absolute one,” but reverting to the cautious stance more characteristic of attorneys, the AMA counsel warns: “Patients should not have to pay for their non-compliance with their lives.”11 As a guide based on compilation of precedent and common sense, the necessary steps to remove a disruptive patient are: Exploit potential third party problem solvers (spouse, family, friend, clergy, others). Document incidents and staff responses in the patient’s chart. Request assistance from the unit social worker/psychiatric consultant. Within a hospital, report the growing problem to the “risk management” service. Once decided, notify the patient in writing by certified mail that a limit in toleration of aberrant behavior has been defined. Establish a date for compliance. If abusive behavior continues, discharge the patient in writing by certified mail, permitting sufficient time to seek and obtain alternative dialysis care (at least 30 days). Include in the notification a list of proximate dialysis units and the directors’ phone numbers. Noncompliance with a medical regimen assumes multiple guises that may position physician and patient at opposite ends of a tug of war. Before labeling a patient as a problem in adherence to a program, the following questions should be considered: Does the patient realize the genesis of his/her kidney failure? Have goals and objectives of treatment been explained in terms comprehensible to the patient? Does the patient have the necessary intellect and motor skills to comply with the treatment program? Are there family members, partners, clergy, or other support figures who might assist in reasoning with the patient? Does the patient have a psychiatric or organic brain disorder that prevents participation in and compliance with the treatment regimen? Is the patient gaining benefits (disability, family attention) from the non-compliant behavior? After analysis of patient specific aspects of undesired conduct, resolution should be attempted following a prepared and rehearsed rational program: Remove “communication spoilers,” such as criticizing, name calling, moralizing, threatening, ordering, and psychologic diagnosing. Employ “reflective listening,” (a technique that signals having “heard” what another has said) to indicate that the patient’s complaint is being “adjudicated.” Deal directly with problem behaviors: small steps, involve the patient, build on patient’s strengths, be clear on who is to do what, when. Devise new approaches to “old problems,” such as lateness and complaints. Detail the consequences of aberrant behavior in terms that are comprehensible. Prepare a behavior contract that specifies what is to be done by patient and renal team. Prepare, in advance, to manage anger. Construct a step-by-step coping for staff use with agitated and disruptive patients. Establish and publicize a grievance procedure. Appoint a patient representative to serve as an advocate when dealing with the “establishment.” One last quandary: Is it ethical (legal) to use child kidney donors? My emersion in this issue began as a renal fellow in Boston when I found the saga of identical twin transplants exciting. The sympathetic Massachusetts Supreme Court decisions that transformed donor surgery from an assault to a magnanimous humane gesture were profound and exhilarating. But today, 50 years later, taking a kidney from a child is not the life or death absolute stress that applied in the predialysis era. Peritoneal dialysis, hemodialysis, and cadaver donor kidney transplantation are workable options. Additionally, it may even be that a monozygotic kidney donor is less desirable because of susceptibility to the same disease that destroyed the twin’s native kidneys. The original (Hart versus Brown, 1972) decision in Connecticut, that a kidney could be removed from a 7 year old for transplant to a twin is troublesome, evoking “bad vibes.” As the proud father of three now adult children, I would not have consented to removing any vital organ from one in the interest of another. Certainly I am aware of the literature indicating that life with one kidney is no different than with two. But I don’t believe it. We evolved with two kidneys for a survival advantage. Somewhere down the line, the piper will have to be paid. Whether earlier hypertension, more rapid progression of diabetic nephropathy, or other consequences unforeseen, the reason that evolution gave us two kidneys is that there is a survival advantage. There is no doubt that an adult has the right to trade that advantage for the welfare of another. Thus, while I would immediately give my kidney to a sibling or child, I don’t countenance the imposition of painful, incomprehensible surgery on a child. By presenting a few unanticipated concerns that accompanied the birth of uremia therapy, clinical nephrology is humanized, reflecting realities of practice in an impersonal era of HMOs, cost consciousness, risk management, and horrific malpractice suits. Before this decade ends, it is safe to predict that ASAIO will hear reports of successful long-term bionic hepatic, cardiac, and pulmonary replacement. Wisdom gleaned from the kidney experience should, if pondered and translated, ease the ethical and legal stresses of applying regimens that replace other vital solid organs.