Helping organ donation with donor advocate teams

One of the joys of practicing at an academic center is that I get to do many different things in my job.

The foundation of my work is seeing my own patients in a large group (more than thirty doctors!) primary care practice.

Two months a year, I take my turn rotating on the hospital inpatient services, supervising teams of residents and students who are the primary caregivers for patients with illnesses serious enough to merit hospitalization.

I also am a classroom teacher, team-teaching the Medical Ethics course taught to all first year medical students.

My work in ethics has afforded me another interesting opportunity, one that combines teaching with medical practice: For the past two years, I’ve been serving as our medical center’s living donor advocate physician.

It’s a mouthful to say, but here’s what it means: Patients that need a kidney or liver have the option of asking relatives or friends (even occasionally strangers) to donate their organs to them. This is because there are long waiting lists for both organs, and relying on organs from people that have just died (“deceased donors”) does not meet the need.

The government, in its role as regulator and payer for most transplant services, promulgated the concept of donor advocate teams to reduce the likelihood that transplant centers would either intentionally or inadvertently coerce potential living organ donors into following through.

Transplant programs like living donors for many reasons: the organs they provide usually work better and therefore last longer in the recipients; happier and healthier recipients enhance the center’s stats and build the reputation of the program; lastly, satisfied donors who have done the good deed of donation also help promote the program and the idea of organ donation in general.

Hence the need for donor advocate teams: “independent” professionals (I am not a part of the transplant program, nor do I receive any compensation from them for my involvement) that evaluate, advise, and “protect” potential living donors — both from the transplant programs AND from the donors themselves.

What does it mean to protect a donor from him or herself?

Relatives often feel compelled to donate organs to their family members–even when it doesn’t make sense. There’s an understandable impulse to want to help those less fortunate, especially when they are in the circle of our family, friends, or local community. Organ donation is such a concrete (but also symbolic) act of charity and goodness. So who are we to stand in the way of someone’s altruistic tendencies?

Here are the things I consider when I evaluate a potential organ donor:

1. Does the donor have all necessary and sufficient information about organ transplant and their role in the process?
2. Do they understand the proposed surgical procedure?
3. Do they understand what giving up part (liver) or all (kidney) of an organ means for their future health?
4. Are they considering this act out of true desire or for some ulterior purpose (money, publicity, selfless destruction)?
5. Importantly: is the donor healthy enough to be an organ donor?

There are other things that we consider, like the implications of the donation on other members of the family, potential lost income (organ donation is by federal law uncompensated), and employment and future insurability issues. We ask if the intention to donate jibes with the potential donor’s religious faith.

Occasionally, we are presented with situations that are even more ethically challenging than usual. For example, the intended recipient’s health insurer pays the donor’s medical costs for the evaluations, the surgery, and the post-operative care. This seems only fair. But given that there may occasionally be long term health consequences of living organ donation, should we allow donors without health insurance to donate? Recipients’ insurance typically do not cover donation-related costs beyond one year.

What if the willing donor is an undocumented immigrant? How does donation impact their legal status or chances for legal immigration? Should we take the high moral road of not allowing undocumented immigrants to donate, since at the very least it seems exploitative?

People often ask me how I know whether or not a potential donor is telling the truth or not with regard to their motivations. I reply that I’m a doctor, not an investigator; I don’t use a polygraph in my work. If someone is physically healthy enough and emotionally determined enough to go through with organ donation, I may not be able to ascertain their truthful intent.

Obviously, though, I always hope for the best. I take people at face value and try to help them through the process. I start with the assumption that people are acting truthfully. I certainly try to.

John Schumann is an internal medicine physician at the University of Chicago who blogs at GlassHospital.

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