How should a primary care physician discuss organ donation with patients?

PROFESSION
Organ donation should be part of health discussions

Ethics Forum. Posted May 31, 2010.

How should a primary care physician discuss organ donation with patients?

Scenario: How should a primary care physician discuss organ donation with patients?

Demand for organs in the U.S. continues to outpace the supply of donor organs available. More than 107,000 people were on the United Network for Organ Sharing's waiting list as of mid-May. Transplantation is unique among situations of medical resource scarcity in its dependence on donors, including living donors.

Reply:

The supply of transplantable organs in the U.S. is entirely dependent upon individuals' willingness to make their organs available voluntarily, either at the time of death or as living donors.

In light of the compelling need for donor organs and our dependence on voluntary donation, there is value in giving people the chance to consider if organ donation is right for them.

Experience has shown that too often our "systems solutions" lead to perfunctory inquiries that merely demonstrate compliance with a requirement. Consider, for instance, the manner in which the mandates of the Patient Self-Determination Act have been implemented by many health care facilities and clinicians. A registration clerk may ask about advance directives, and a pamphlet explaining them may be tucked in among other registration documents. Similarly for organ donation, when one gets a driver's license, there may be a box on a form or a clerk inquiring about one's wishes regarding organ donation. Although these approaches technically fulfill a mandate, they clearly do not engage individuals in contemplation about what they fundamentally value.

This is not meant to suggest that the primary care office visit should become the venue for philosophical speculation. Nevertheless, the primary care relationship can provide the context and an entrée for conversations about a range of advance care planning issues, including organ donation.

Optimal advance care planning compels us to understand patients' wishes and the values that drive them. Merely determining if one has or wants an advance directive or donor card is insufficient. An exploration of patient values allows for a richer understanding and more nuanced approach to decision-making for physicians and any who might serve as surrogate decision-makers.

This all sounds well and good ... and totally impractical for a busy clinical practice. A point I would willingly concede, if I were suggesting that an entire discussion of patient values could or should be neatly packaged and contained in a single office visit.

Actually, absent some pressing need to clarify advance care planning (for instance, on admission to the intensive care unit), this conversation is better pursued over time. Even planting the seed during an office visit, however, requires effort and preparation.

In a new patient visit or a health maintenance visit, the social history provides an occasion for framing the patient's context for decision-making. For example, in reviewing marital status or living arrangements, one might ask, "Who would you rely on to help you make medical decisions?" or "Is there anyone you want us to include in decisions or in sharing health information?" This approach also can prompt clarification about Health Insurance Portability and Accountability Act disclosures to one's spouse or other family. Similarly, in this context, one may wish to explore issues of religious affiliation or participation in a faith community.

Likewise, in reviewing the pertinent family history, an opportunity may arise to explore a patient's experience of end-of-life care, such as one's reaction to a parent, spouse or sibling's illness and death. This information may clarify the patient's wishes for the goals of care at the end of life. Similarly, a family history of organ failure, such as end-stage renal disease or its treatment, provides an occasion not only for thinking about the patient's health risk but also for considering his or her exposure to, and attitudes about, organ donation and transplantation.

Although familiarity with these issues is becoming increasingly common, introducing these topics may not occur naturally in an office visit. Providing a health planning summary at the end of the visit can be a segue to introducing or revisiting the topics. Just as one might summarize health and wellness advice or recommendations for preventive services, a review of advance directives normalizes the expectation that this is part of good, routine primary care. This approach can avoid the impression in the patient's mind, "I must be dying if she is talking to me about these issues," or "If I sign a donor card, they won't work as hard to keep me alive." Instead, it allows the physician to frame the discussion as, "These issues are so important that I discuss them with all of my patients and, from time to time, I hope we may revisit them."

In the acute care setting, it can be confusing to discuss the entire spectrum of advance directives, so there may be a tendency to focus on the living will or durable power of attorney for health care. Likewise, discussions of do-not-resuscitate orders may be appropriate in that context. Conversations with patients or families about organ donation in the acute care setting are emotionally charged, often calling for explanation of technical issues or processes, and are therefore best left to those most knowledgeable and best prepared to address them, such as the regional organ procurement organization representative.

Nevertheless, there are several advantages to the physician's having previously talked about organ donation. First, it can be raised in a less emotionally charged setting. It also allows the individual who would be the donor to make the decision, rather than his or her surrogate. Further, it may give individuals a chance to inform potential surrogate decision-makers of their wishes about organ donation or to enter their decision in a state-based organ donation registry.

The proportion of adults who have made a deliberate decision not to be organ donors seems relatively small; likewise, the proportion of those who have registered their intent to be donors is also modest. Allowing the undecided group to reflect on the impact of organ donation can have a profound effect. The doctor's experience with patients who have had or will need transplants can put a face on the compelling need that often is not captured well by soaring waiting list data. Personal exposure to this need and to the beneficial outcomes of transplantation may influence those individuals in the uncommitted group, leading them to make affirmative decisions about postmortem donation.

The doctor's guidance in an individual's consideration of living organ donation may present a more difficult challenge.

First, the consideration of living organ donation is most commonly seen in a loved one's need for a transplant; these situations may be colored by complex psychosocial considerations about which physicians have unique insight. Further, the relevant medical contraindications (such as pre-hypertension or pre-diabetes) may become increasingly fuzzy in the face of a prospective donor's insistence that he or she is willing to consent to increased risk. Here, the physician's unambiguous commitment to the donor's well-being, serving as a staunch advocate, is critical.

Physicians increasingly are encountering people exploring the possibility of living organ donation as a so-called "good Samaritan" or "altruistic stranger" donor; that is, one without a specified family member, friend or acquaintance as the designated recipient. The best source of information or route for such a prospective donor is difficult to determine. Whether organ procurement organizations or transplant centers serve as the more appropriate point of contact for individuals considering altruistic living donation varies around the country.

Regardless, physicians can serve a navigator function, directing patients to reputable sources of reliable information. The doctor's commitment to the patient's well-being may demand more than top-notch clinical care; assisting patients in navigating and assessing complex information becomes particularly critical in facilitating decisions about organ donation.

Primary care clinicians are uniquely positioned to appreciate both the need for and benefit from organ transplantation. Likewise, we have an opportunity to signal to our patients the importance of considering the merits of organ donation and to ensure that their wishes are honored. In the case of living donation, the primary care field may need to become more assertive in advocating for the patients' interests.

--Mark Fox, MD, PhD, associate director, Oklahoma Bioethics Center; associate professor, School of Community Medicine, University of Oklahoma

Ethics Forum discusses questions on ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to philip.perry@ama-assn.org or to Ethics Group, AMA, 515 N. State Street, Chicago, IL 60654; fax 312-464-4613. Opinions in Ethics Forum reflect the view of the author and do not constitute official policy of the AMA.

http://www.ama-assn.org/amednews/2010/05/31/prca0531.htm