The Organ Donation Committee

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ethics in cardiopulmonary medicine

~~IIIIII.......------------The Organ Donation Committee*

An Ethically Responsible Approach to Increasing the Organ Donation Rate l.£e 1\1. Sanders, A.B.; Pe{!J!,y Devney, R.N., AI.S.N.; Ernie and Thomas A. Raffin, t\I.D., F.C.C.R

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I ODC = organ donation committee I

organ transplantation is an extraordinary H uman medical advance that over the past two decades has presented the "gift of life" to almost 100,000 patients in the United States. A kidney, heart, liver, pancreas, or lung that belonged to an automobileaccident victim can be transplanted, hours later, to the body of a patient suffering from chronic organ failure. A kidney recipient may receive an additional 20 years of life, and Medicare may save the thousands of dollars otherwise necessary to maintain the patient on dialysis treatment. But not all patients with organ failure benefit from transplantation. According to the National Organ Procurement Network (January 1992), of the over 23,000 patients currently awaiting organs, fewer than 14,000 will receive them. The remaining 9,000 are victims of the organ supply problem: too many potential organ recipients, too fe\\r organ donors. I This problem is most frustrated by one more statistical fact. Each year at least, 5,000 human organs deemed medically suitable for transplantation remain inside the bodies of recently deceased persons whose families did not consent to donation." In other words, thousands of physiologically available organs are never transplanted because they are psychosocially difficult to obtain. In an attempt to increase the supply of donated organs, state "required request" laws enacted over the past 10 years have required that hospital staff request consent for organ donation from the families of all eligible patients. Furthermore, public and private organizations have joined hands with hospitals and state motor vehicle departments to increase national *From the Stanford Universitv Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, Calif (Mr. Sanders and Drs. )(nln~ and Raffin); and the California Transplant Donor Network, Milpitas, Calif (Ms. Devney). Supported by the Samuel T. Reeves Fund and the Stanford Universitv Center for Biomedical Ethics. Reprint requests: Dr. Ra(fin, Stanford Unicersitu Medical Center; 300 Pasteur Drive, Palo Arto. CA 94.'304

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awareness. Unfortunately, neither legislation nor education has significantly increased the organ donation rate since the required-request laws took effect. 3 Responding to this historic failure of plans to increase consent rates, recent proposals in major medical journals have recommended financial incentives or denying informed consent. The resultant ethical questions join the age-old debate between questionable means and noble ends. The sanctity of the human body and the protection of donor families raise an argument against the medical imperative to extend life. Is coercion of a donor's family justified in order to save a human life? Does the medical principle of informed consent become unimportant after brain death is declared? Or can we find equally effective alternatives that do not threaten the family's autonomy of decision making? In this article we review the current dimensions of the organ supply problem and identify the sources of the problem. Next we evaluate the range of proposals to solve it, some of which introduce serious ethical problems. Finally, we propose an approach to increasing organ donation rates by optimizing communication beh\reen health care professionals and families of potential organ donors. THE ORGAN SUPPLY PROBLE~1

Organ donation rates are grossly below their theoretical potential, and ineffective hospital communication must take much of the blame. Each year between 6,900 and 10,700 persons who die hospitals deaths in the United States are deemed medically suitable for organ donation." These individuals, mostly young victims of head trauma, contribute 80 percent of the kidneys and nearly 100 percent of other organs transplanted in this country.' According to Manninen and Evans" and a November 1989 survey compiled by the United Network for Organ Sharing, telephone interviews indicate that between 53 percent and 68 percent of Americans would agree to donate a family member's organs; however, fewer than 4,000 persons (37 percent to 58 percent of the theoretical maximum) annually The Organ Donation Committee (Sanders et a/)

become donors. If the full potential for organ donors were tapped, between 2,000 and 7,000 additional persons might receive organ transplants each year. 2 Between a potential donation rate of68 percent and the current rate of between 37 percent and 58 percent lie the people who frustrate the organ donation process. More than the donors, their families, or the organ procurement organizations that distribute acquired organs-the doctors and nurses who first speak to donor families must shoulder much of the responsibility for the organ supply problem. Because they rarely are the source of decision making, organ donors themselves cannot be blamed for inadequate donation rates nationwide. Since 1973, the Uniform Anatomical Gift Act has permitted organs to be removed from a brain-dead individual, provided one of two conditions is met: the donor has signed a consent document, or the donor's closest known relative consents to the donation." According to the previously mentioned survey by the United Network for Organ Sharing, although as many as 25 percent of Americans carry a signed card authorizing organ donation (usually the driver's license), the young persons most likely to qualify as donors (aged 18 to 24) are least likely to carry a donor card. Though no recent data are available, only 4 percent of organ donors in 1986 carried a donor card. The remaining 96 percent of donors left the decision to donate to their families. Even if many more persons carried donor cards, 92 percent of state transplant coordinators admit that hospitals would continue to consult families for final consent." New proposals to improve the use of driver's licenses as donor cards are laudable," but they often overlook the physician's conventional preference for family members' consent before any organ donation. Donor families have many reasons to consent to organ donation, but without being fully informed of those reasons, families cannot shoulder the responsibility for low donation rates. For families mourning the tragic death of the potential donor, organ donation serves to palliate the grieving process. Donor families, interviewed several months after the death of the family member, and nurse counselors, who contact the donor family after the donation has been performed, agree in separate interviews that organ donation itself can be very therapeutic for the donor's family:9-11 Organ donation adds a sense of purpose to an otherwise meaningless accident. No major religious group holds moral reservations against removing organs from a dead body in order to save a life,12-15 and all donation-related procedures are performed free of charge to the donors family: 11 With low awareness, poor communication, and poor accountability, health care professionals may unintentionally impede the effort to recruit more families into

the organ donation process. Hospital staff are mandated by law to present the option of organ donation to donor families. Introduced into state statute books during the 198Os, required-request laws were expected to solve the organ supply problem. They require that hospitals request donation from the families of all eligible donors. According to a ruling by the Health Care Financing Administration, hospitals must install required-request policies to remain eligible to receive Medicare funds." Nonetheless, in the years since these regulations were enacted, organ donation rates have remained steady at about 4,000 per year, and by all measurements hospital staffs remain largely unaffected by required-request laws. Knowledge about brain death and organ donation was shown in a 1989 survey to be appallingly low among hospital staff members, and many physicians admitted feeling excessively awkward when approaching families 'about brain death and donation options. 10 Donor families are often dissatisfied with the coldness of the initial communication they received from the physician or nurse who first raised with them the issue of organ donation. II Often their initial communication is made at least 1 day after brain death has been established. 17 In fact, required-request legislation creates no channel for ensuring that the donation process is initiated at all. Both the Health Care Financing Administration and the Joint Committee on the Accreditation of Hospital Organizations require only that each hospital possess a sentence in their bylaws alluding to a policy of required-request. 18 Since some elements in the decision-making process are beyond staff control, inadequate organ donation rates can be blamed partly on the hospital environment itself: Family members who express willingness to donate by telephone interview may change their minds when confronted in the emergency room with the unexpected, tragic death of a loved one. Many hospitals are too preoccupied with other emergent concerns to make the donation process work. Even the more sensitive staff members often cannot overcome a family's language and cultural barriers," and some donor families indicate that they were inappropriately charged for donation-related procedures. II But when a family must be told that their relative is brain dead, the only individuals in the position to invite the family into the organ donation process are the health care staff assigned to that patient. Hospital staff, then, must accept responsibility for the failures as well as the successes of the human organ donation process. ETHICALLY PROBLEMATIC SOLUTIONS TO THE ORGAN SUPPLY PROBLEM

Recent literature on organ donation introduces two novel proposals that prove to be both ethically unsound CHEST I 102 I 5 I NOVEMBER. 1992

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and inattentive to the quality of hospital staff participation in the donation process. The first proposal, a presumed-consent law, may deny patient autonomy and negate the value of the doctor-family relationship. The second proposal, financial incentives to donor families, may facilitate coercion and polarize the doctor-family realationship. Presumed Consent

Presumed-consent legislation would make organ retrieval a customary part of medical practice by removing patients and their families from any decision making. Under a presumed-consent law; the state assumes full ownership of the organs of any patient who has been declared brain dead. Though such laws provide a means for patients or their families to opt out of the donation process, all presumed-consent laws violate fundamental medical ethics by denying patient participation in medical decision making, and in the nations that have legislated presumed consent, the laws have failed to produce workable solutions. Because presumed consent denies both patient and physician any part in the decision-making process, it abrogates the ethical principle of autonomy The four ethical pillars of medicine are traditionally considered beneficence, nonmaleficence, justice, and autonomy. Any injury to these pillars threatens the integrity of the whole. In the case of organ donation, however, it becomes difficult to uphold all four at once. People who support presumed consent consider it worthwhile to sacrifice donor autonomy in order to achieve beneficence. But this equation is misguided, and its necessary revision is a frustrating reality. Beneficence, under the practical rubric of medical ethics, is limited by the physicians physical and intellectual property. It pertains to the physician's obligation to prolong life and relieve suffering by any means that belong to the physician. Because a donor's organs are not the physician'sproperty, the provision of transplantable organs escapes the definitional bounds of medical beneficence. Organ donation is a serendipitous event that makes possible a life-saving treatment. Transplantation is medical beneficence, but donation is not. The day-to-day ethics that guide the doctor-patient relationship argue strongly against presumed-consent laws. Regardless of the presumed-consent law in their country, French physicians insist upon requesting consent from donor families " In Singapore, presumed-consent laws are increasing kidney donation rates, but they are quite controversial." In other words, the organ donation process needs a doctorfamily relationship, not only to work well, but to work at all. According to the United Network for Organ Sharing, as many as 50 percent of families in the United States may hold serious reservations about donating a relative's organs. Furthermore, between 52 1574

percent and 86.5 percent of Americans oppose importing the presumed-consent law 5•22 Because of this deep-seated need to include families in organ donation, presumed-consent laws cannot guarantee an increase in donation rates. Such laws have delivered a disappointing harvest of organs in the nations of northern Europe where such laws are in place. 23 •h And as will be outlined later in this article, some alternatives to presumed consent have not yet been exhausted. Financial Incentives to Donor mmilies

In a commercial society, the most direct approach to procure more organs would be, of course, to buy them. Though rational arguments for organ marketplaces have been proposed, the National Organ Transplant Act of 1984 makes such sales illegal. 16.25 Instead, more clout has been given to the idea of providing limited financial compensation to donor families. One recent article in a major journal proposed that $1,000 be awarded any family that consents to donate a relative's organs. Others propose that families be reimbursed for funeral expenses. 26 Regardless of the means employed, financial incentives to donor families introduce the potential for coercion. Ideally, surrogate decision makers, such as donor families, should act in the interests of only the patient. Since in the absence of any financial pressure people are more willing to donate a relative's organs than to donate their own organs, financial pressure may coerce surrogate decision makers into choices not in agreement with the patient's interests. As defined by Faden and Beauchamp, ~ coercion is the unethical extreme of a continuum that begins with persuasion and evolves through manipulation. If money served only to advertise the organ donation option to an otherwise apathetic donor family the incentive would be persuasive. If the money caused a family to act against their own beliefs or against the known beliefs of the donor, the incentive would be coercive. In other words, a financially desperate family that holds a moral objection to organ donation may be coerced by a financial incentive. Since a financial incentive system for organ donation demonstrates the potential for coercion, it is by definition unethical. Not only is an incentive-based system unethical, but payment to the donor family may disproportionately decrease organ donation rates where they are most needed. Monetary reimbursement destroys the altruism of the donation process, a component that many donor families find alluring and therapeutic. Over 40 percent of Americans surveyed oppose compensation schemes for organ donation, and most cite the simple notion of "buying organs" as their major reason for opposition." For many African-Americans, Asian-Americans, and Native Americans who fear the The Organ DonationCommittee (sancJ8IS et aI)

largely European-American medical establishment, financial incentives for organ donation may reinforce feelings of exploitation. During the 193Os, the U.S. Public Health Service provided $50 "burial stipends" in return for the authorization to perform autopsies on African-American men. The purpose of the autopsies was to conduct the Tuskegee syphilis experiment, a historic symbol of racist coercion in medical research." Currently African-Americans and LatinoAmericans are the most underrepresented ethnic groups in the organ donor pool, refusing to donate their relatives' organs two to three times as often as does the general population.Pv" To match the immunologic needs of organ recipients in those same ethnic groups, willing participation is critically needed. By polarizing the doctor-family relationship, financial incentives may actually hinder this needed participation. A HOSPITAL-BASED PROJEGr TO INCREASE DONATION RATES

Old initiatives have failed empirically to increase organ donation rates, and new proposals, though they may have some merit in increasing organ donation rates, are ethically unreasonable. How then can we increase donation rates within ethical boundaries? The following proposal for an organ donation committee (ODC) in every hospital makes the organ donation process more attractive to physicians and more amenable to donor family needs. We believe that our plan will be simple to institute, free of charge to hospitals, attractive to hospital administrators, and effective in increasing organ donation rates.

The Plan Operating as a subcommittee of a hospital ethics committee or of a hospital administrative board, ODe would serve three major functions: (1) to maintain a list of effective communicators from the hospital staff (eg, physicians, nurses, and social workers) and the local organ procurement organization; (2) to keep hospital personnel aware of the definition of a viable organ donor and of the availability of these communicators to approach families about organ donation; and (3) to ensure that the families of every organ donation candidate receive full and appropriate opportunity to consent to donation. To fulfill the first function, the 0 De would solicit the nomination of competent communicators: members of the hospital staff recognized for their ability to communicate effectively with patients about death and dying. The nomination process would involve the active participation of primary care, emergency, and trauma physicians; nursing staff; emergency room staff; social workers; intensive-care physicians; neurologists; ethics consultants; and other interested hospital personnel. A special effort should be made to

nominate staff members sensitive to the native languages and cultural backgrounds of different patient populations. After the ODC compiles its list of communicators, the local organ procurement organization would provide them with the most critical information on the mechanics of organ donation. To fulfill the second function, the 0 DC would outline a clear protocol for a physician to contact a communicator when a patient whose organs remain viable is declared brain-dead. The physician would choose whether to employ the expertise of the communicator. The protocol might involve a team model. 31,32 The method agreed upon would be made public in every nursing station and staff office. To fulfill the third function, the 0 DC would create a simple auditing system to review the performance of organ donation counseling at the hospital. The medical record for every patient declared brain-dead would include entries for the signatures of two individuals: (1) the communicator who counsels the patient's family about organ donation, and (2) the legally designated surrogate decision maker (family member) who provides or denies consent. Such signatures would be tabulated yearly to evaluate the percentage of organ donation candidates who became actual donors. The ODC would conduct a regular review of this subpopulation of patient records, providing confidential feedback about individual performance to communicators, and inquiring about any patients for whom organ donation was not made available.

Hospital Costs Since the ODe would require no new employees, little additional paperwork, and a few additional workhours per month, costs would be minimal. The individual communicators on the organ donation council may be paid by adding a small fixed fee to their annual salary. This salary bonus may even serve as a noncoercive incentive for competent communicators to become listed by the ODC. Such expenses would be absorbed by the United Network for Organ Sharing, which already pays for donation-related procedures, such as operating room costs.

Additional Benefits The ODe should be an attractive option for hospitals wishing to comply with the existing legislation, to improve patient communication, to reduce unnecessary costs, and to create an ethically sound response to a national need for life-saving organs. Compliance with two regulations necessary to meet eligibility to receive Medicare funds, the requiredrequest laws and the Patient Self-Determination Act, may be achieved by the institution of a hospital ODC. The ODC plan is more than sufficient to meet all current state requirements for informing families of CHEST I 102 I 5 I NOVEMBER, 1992

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the organ donation option. Effective this year, the Patient Self-Determination Act requires hospitals to inform all patients about living wills and advance directives for health care. The availability of ODe communicators and yearly ODe meetings, in conjunction with the hospital ethics committees, could be used conveniently to help fulfill this second regulation as well. By meeting the needs of a donor family, the ODe may help improve the hospital's rapport with its patient population. By making accessible to physicians the talents of nonphysicians, the ODe may help invigorate the doctor-patient relationship, which has been criticized for its failure to provide effective communication. 33 ,34 By expediting the organ donation process, the ODe may help reduce medical costs to organ donors, their families, and the hospital. Each extra day spent in the intensive care unit costs between $2,000 and $4,000. 35 As the number of uninsured young people remains alarmingly high nationwide, hospitals absorb much of the cost for the care of organ donors.

Ethics of the ODe An important feature of the ODe model is that, while it helps save lives, it also upholds the central tenets of professional ethics. By focusing on effective communication, the 0 De gives doctors greater opportunity to honor the autonomy of patients and their families. Engaging a patient or a patient's proxy in the control of health care decisions is a necessary feature of responsiveness to the needs of people compromised by accidents or illness. By auditing the results of organ donation counseling, the ODe fosters community values by ensuring that the hospital staff, particularly physicians, accept collective responsibility for the care of strangers who await organ transplants.

Effectiveness in Increasing Organ Donation Rates Admittedly the ODe plan is hopeful and without guarantees. It offers no immediate promise of increased donation rates. The plan may not work in small hospitals that see one or two donor candidates per year. In larger hospitals, an unenthusiastic ODe may be perceived by administrators and staff members as a purposeless source of bureaucratic paperwork. Nonetheless, the ODe is a model for effective, responsible solutions to the organ donation problem. Other hospital-based organ donation programs have demonstrated that attention to effective professional communication with donor families pays off in significantly increased donation rates. One hospital increased the rate from 18 percent to 57 percent merely by requiring that the physician who informed the family about brain death choose a second staff member to deliver information about organ donation." Other 1576

projects significantly improved organ donation rates by periodically reviewing physicians' communication performance.v'-" The Partnership for Organ Donation, a nonprofit organization, has initiated pilot projects that focus on doctors' communication during the donation process, but they do not include the auditing function that the ODe plan creates.P Although such strict surveillance of staff performance is implausible, the ODe provides an outlet for staff dissatisfied with their own performance. By providing such an opportunity for more effective communication, the ODe may well improve organ donation rates. eO",CLUSIONS

1. Organ donation rates can be increased by 10 percent to 30 percent, representing 700 to 3,200 more lives saved each year. 2. Donation rates remain low in large part due to the failure of health care personnel to communicate with donor families. 3. Two recent proposals to increase organ donation rates, presumed-consent legislation and financial incentives to donor families, are ethically unsound because they abrogate the integrity of surrogate decision making. 4. We propose the concept of an ODe, which encourages physicians to employ the services of effective hospital communicators when patients are declared brain-dead, as an ethical and effective solution to the organ supply problem. REFERENCES

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