Discussing organ donation with patients at the end of their lives is "playing catch-up," according to physicians and bioethicists in the field. "There's no 'best course' at that point," says Dr. Priscilla Short, Program Director in Science, Quality, and Public Health at the AMA and representative to the Coalition on Organ Donation. "Primary care physicians should discuss the option of organ donation as part of routine patient visits," Dr. Short explains. "Otherwise the process is almost certain to cause the clinician--if not his or her patient--some unease."
Yet studies show that most physicians first mention the option of organ donation when patients are near death; only 30 to 40 percent discuss the option during routine visits . Perhaps this will change as transplant surgery and management of those with donated organs continue to improve. In the meantime, the role of physicians in the end-of-life situations where their patients might be donors is ambiguous and has evoked a federal regulatory response.
In an effort to increase the supply of organs for transplant and to relieve physicians of having to request that dying patients consider donation, the Health Care Financing Agency (HCFA) issued regulations in 1998 that conveyed the responsibility for discussing donation with dying patients to members of Organ Procurement Organizations (OPOs) or OPO-trained hospital personnel. People in these 2 categories are called "designated requestors." Under the regulations, known as the HCFA "donation rule," (1) hospitals that receive Medicare funding must notify their OPOs in a timely manner about individuals whose death is imminent or those who die in the hospital, and (2) only designated requestors may approach families about organ donation in these hospitals.
Unfortunately, the donation rule has not immediately succeeded in either of its aims--increasing the number of donors significantly and assisting physicians in end-of-life communications with patients. An early assessment study found that the number of organ donors rose by less than 1 percent in the first year of the donation rule . As to its second goal, many physicians see the rule as adding to their woes rather than relieving them. "They're between a rock and a hard place," Dr. Short explains. On the one hand, asking patients about organ donation seems to violate of the ethical commitment to consider the patient' s health as the primary concern. As the AMA Code puts it: "Concern and allegiance [to the patient] must be preserved in all medical procedures, including those which involve the transplantation of an organ from one person to another where both donor and recipient are patients" (2.16 Organ Transplantation Guidelines). On the other hand, the appearance of OPO or other designated requestors on the end-of-life scene feels like an intrusion into the final, intimate moments between patient and physician, patient and family members.
Where the patient dies without having professed a desire to donate organs, physicians and designated requestors must raise the topic with family members. Family members are far more likely to consent to donation, according to several studies, when they have been given sufficient time to accept their relative's death . Ensuring that a delay occurs between informing family of the death and advising them of their right to consent to organ donation is called "decoupling," and has become the preferred practice in cases where patients are declared brain-dead.
The practice of retrieving organs from non-heart-beating rather than brain-dead donors (the so-called Pittsburgh protocol" that has been gaining acceptance since 1991) further complicates the request process. Potential non-heart-beating (or asystolic) donors are generally those on life-sustaining equipment for whom further medical treatment would be futile and whose death is likely to follow within one hour from the time life support is removed. In these cases, family members must be asked about donation before life support is removed, otherwise valuable time will be lost, and the organs may be unsuitable for transplantation. OPOs such as the Regional Organ Bank of Illinois (ROBI) have established protocols that designate the time that may safely elapse between cessation of heartbeat (and hence circulation to organs) and the beginning of organ retrieval surgery--about 1 hour. In the case of asystolic donors, the option of organ donation cannot be decoupled from the discussion of death. It must take place before family members have fully accepted and become used to the idea that their relative is dead.
In its report 4-I-94, the AMA's Council on Judicial and Ethical Affairs encouraged further study of the Pittsburgh protocol and urged that the "health care team's conflict of interest in caring for potential donors at the end of life be minimized...through maintaining the separation of providers caring for the patient at the end of life and providers responsible for organ transplantation." The report then listed safeguards for minimizing potential conflicts (see H-370.975).
In sum, family practitioners, internists, and other primary care physicians should initiate discussions of organ donation during routine visits with patients, thus avoiding the all-round discomfort of raising the topic for the first time in end-of-life situations. If they have not done so, and the patient has no stated or written directive concerning donation, federal regulations demand that the hospital notify the regional OPO concerning the patient's imminent or in-hospital death. Finally, some suggest that physicians experience less dissonance between their primary roles as care givers and participation in organ donation conversations when they frame the topic in terms of offering patients the option or choice to donate rather than framing their comments as a request for organs .
The 30 percent comes from a study by the NorthEast Organ Procurement Organization and Tissue Bank of Hartford, CO: Margaret B. Coolican, RN and Mary A Swanson,RN, "Primary health-care physicians: Vital roles in organ and tissue donation,"Connecticut Medicine 62, no. 3 (Mar 1998): 51. A Texas Medical Association survey following a year-long "Live and Then Give" campaign found that, among respondents, the percentage who discussed organ donation with patients before life-threatening illnesses had increased from 25 to 37 percent: Texas Medical Association, Report on Continuous Survey Project.
June Gibbs Brown, Inspector General, Medicare Conditions of Participation for Organ Donation: An Early Assessment of the New Donation Rule (Washington, DC: Department of Health and Human Services, 2000, 2.
See, for example, R N Garrison, F R Bently, G H Baque, et al., "There is an answer to the shortage of organ donors." Surgical Gynecology and Obstetrics 173 (1991): 391-396; J A Cutler, S D David, C J Kress, et al., "Increasing the availability of cadaveric organs for transplantation: Maximizing the consent rate,"Transplantation 56 (1993): 225-228; C I Beasley, I Capossela, L E Brigham, et al., "The impact of a comprehensive, hospital-focused intervention to increase organ donation," Journal of Transplantation Coordination 7 (1997): 6-13; and W DeJong and H G Franz, "Requesting organ donation: An interview study of donor and nondonor families,"American Journal of Critical Care 7(1998): 13-23.
Coolican and Swanson, 151.