III. Independent Donor Advocate Team
An independent donor advocate team should be established for any live donor adult liver transplantation program. This team’s interests must be centered on the well being of the live donor; it must be constituted to assist donors in making informed decisions, and balance external/ family pressures to donate. While centered on the interests of the donor, the team may not be totally independent of the recipient events, as there must be interaction with the transplant surgeon of the recipient team. However, at least one member of the donor advocate team should be independent of the recipient and designated solely to the interests of the donor.
Individuals presenting as potential donors should have an initial consultation at the transplant center prior to meeting the independent donor advocate team. This meeting should include an informational discussion with the surgeon who would be performing the partial hepatectomy. This surgeon, likely has the most in-depth clinical knowledge regarding this procedure and the possible risks and complications. The potential donor’s family and persons with significant relationship to the potential donor should be included in this meeting.
A. Team Responsibilities
The independent donor advocate team’s main responsibility is to support the donor. The independent donor advocate team’s role begins with the donor evaluation process and continues through donation, the postoperative period, to discharge and postdischarge. Team members should complement the surgical team ensuring that the needs of the donor are fulfilled in a prompt manner and in accordance with best medical practice.
The team should:
- structure the process of informed choice specifically stating informed "choice" instead of preordained "consent") and emphasize that the decision to donate is not a foregone conclusion;
- protect the interests and well being of the donor;
- inform the potential donor that the independent donor advocate team will be discussing his or her case with the transplant team and that the independent donor advocate team may override the potential donor’s wishes;
- provide information regarding the medical, psychosocial, and financial implications of the live donation for the potential donor;
- explain the evaluation process, what to expect, what it means to be a donor, and that the donor may opt out at any time in the process;
- decide on medical and psychosocial donor suitability; if the team does not have unanimous agreement, the donation will not occur;
- discuss with the donor the formal conclusion regarding his or her medical and psychosocial suitability for the surgery;
- assure there is continuity of care during hospitalization and assure that there are appropriate referrals for postdischarge care including follow-up from medicine, psychiatry or social work, as needed.
B. Team Characteristics
- The independent donor advocate team should receive no direct financial or personal gains from approving the donor’s participation.
- The independent donor advocate team’s status at the transplant center should not be affected by decisions made on behalf of the donor.
- The independent donor advocate team must be medically sophisticated in transplantation and aware of relevant statistics such as center volume and outcome data, and be able to explain such information to the potential donor.
- Each member of the team must have sufficient stature and preparation in his or her role to have the capacity to absolutely exclude a specific donor candidate when appropriate.
- The independent donor advocate team should consist of, at a minimum, an internal medicine physician, a transplant coordinator/ nurse clinician, a medical social worker with the participation of a psychiatrist and/ or ethicist as appropriate. The Committee recommends the following:
- All team members should have a comprehensive working knowledge of liver disease and transplantation.
- The social worker (who should have at least a master’s degree) should be skilled in individual and family counseling, should understand the entire donation process, and should be able to provide information on financial issues and community resources.
- Once team members are designated by the center to serve on the independent donor advocate team, they should participate in at least three donor evaluation processes per year.
The independent donor advocate team should take the lead in educating the potential donor about the entire donation process. The team should begin with the existing known facts about the donation process, discuss these facts, and then explain how these issues relate to the potential donor’s personal beliefs and values. This should be a long and thorough discussion that helps the potential donor recognize that only certain persons can and should be permitted to donate. A brochure or written materials regarding the donation process should be developed and provided to all potential donors.
The team should:
- Evaluate the intellectual and emotional capacity of the potential donor to exercise legally and ethically adequate informed choice. This process is far more complex than the process involved in evaluating the capacity of a patient to provide informed consent to a treatment that is offered in his or her own best interest.
- Devise a process appropriate for each individual potential donor to inform him or her about the risks of medical interventions, which makes clear that the benefits are speculative while the risks serious and measurable.
- Balance the hopes of donors, such as expectations of recipients’ gratitude, and the sense of well being from the altruistic behavior of donation, against the real medical risks of the donation procedure.
- Ensure that there is a thorough understanding of the elements of the decision. When the risks are great, the team should interact with the potential donor to be certain that all intellectual and emotional considerations have been discussed and that the patient has understood the risks and benefits and applied them to his or her personal situation and core beliefs and values.
- Determine that the potential donor’s decision is voluntary. The donor should feel free to choose an option. Others should not try to influence the donor toward a particular decision.
- Encourage the potential donor to contact his or her insurance company in advance.