Transplantation, When Money Isn’t the Problem
by Natalie Ernecoff
The year was 1962, and four patients stood before a committee, but not in person. Their lives had been condensed to folders, papers, and medical records. This committee—consisting of seven anonymous laymen—would select one of them to continue living based on their contributions to society, their dependents, their character, and their potential.
This was the basic structure behind the Seattle Swedish Hospital Admissions and Policies Committee, which came to be known as the “Seattle God Committee.” Established in 1962, this was the nation’s first major attempt in rationing health care. The committee was responsible for choosing which Washington state locals with kidney failure would receive access to the first hemodialysis machines. Physicians selected patients who were strong candidates from the biomedical perspective, and sent them to the committee for character and social evaluation.
This was America’s first brush with distribution ethics, and it made the nation uncomfortable. The scene changed quickly when the God Committee started receiving publicity in the national media. Congress was quick to institute a policy that covered all patients who needed hemodialysis (no matter their condition) to avoid developing a rationing scheme, making the God Committee obsolete. This mitigated the issue of distribution ethics temporarily, but then organ transplantation abilities and facilities spread across the country. The limited number of organs forced bioethicists and physicians— in addition to policy makers and the public—to think about rationing, because no amount of money could make more organs available to them. Someone had to find a way to decide who got the organs and who did not. One of the most practical ways to start was to follow Seattle Swedish Hospital’s first step when they selected patients to go before the God Committee: select a pool of patients based on biomedical and geographical viability. This is the basis of the United Network for Organ Sharing (UNOS) list, which is used in practice today. Physicians must determine if their patients are likely to survive the procedure and have acceptable projected recovery, based on each patient’s own quality of life goals. They award points by consideration of these criteria, then place patients on the UNOS list, where they roll on a first-come, first-serve basis within their point groupings.
This system neglects something that was the basis for the formation of the God Committee: character and social factors. But sometimes these factors can be indicators of transplant success rate, not arbitrary judgments made by society. For example, organization and cleanliness are useful qualities to have with respect to following medication timetables and preventing infection, respectively. Patients with higher levels of independence are able to medicate themselves, attend their follow-up appointments, and maintain lifestyle changes without being nudged by those around them. Not of least importance, patients prone to anxiety and depression typically do not fare well under the stress of post-transplantation states.
Not only do personal qualities potentially affect transplant success rates, but social factors can also impact transplant efficacy. Even with the most independent individuals, a strong support system serves as a great resource in transplant cases. Not only does it lend physical and practical support post-surgery, but just as importantly, it helps to keep the patient’s emotional well-being in check.
To learn more about the kidney distribution process, I spoke with Dr. Ron Shapiro, a medical doctor, professor of surgery, and the Robert J. Corry Chair in Transplantation Surgery at the Thomas E. Starzl Transplantation Institute in UPMC. We discussed the events leading up to placement on the UNOS list.
“The evaluation process is fairly extensive… You have to make sure the recipient is in good enough shape to get a transplant. They jump through large numbers of hoops: [we have to] make sure their heart’s okay; they have a social service consult; they have a psych consult often…So it’s a whole production before you can actually get listed.”
He also reinforced the necessity for some sort of support, with an emphasis on the practical aspects of recovery, such as transportation, running errands, and helping manage medications. Dr. Shapiro noted the importance of medical adherence, and he said it is an issue that still has the ability to plague healthcare providers, especially those who work with transplantation patients who must take their immunosuppressants religiously.
The best way to alleviate the limitations of the current organ distribution method is to increase donor awareness, thereby increasing the supply of organ banks. Though a distribution scheme would still be necessary, we would not need to rely upon it to such a degree. Most likely, physicians and bioethicists will always be making distribution decisions, but expanding the selection pool would naturally make the process less strenuous for them. Greater organ availability ultimately yields more potential transplants, leading to more people getting organs and fewer remaining on the UNOS list for extended periods of time, which can be fatal.
Opposite the United States’ system, Europe’s current donor system requires citizens to opt out of being a donor if they so desire, in other words, they are donors by default under the presumed consent process. A change in the U.S. default status is unlikely, but public awareness would also be an effective improver of the modest donor pool.
A change this drastic at the public health level may not be necessary, Shapiro suggested. Spain has the highest rate of donation although they have not instituted a presumed consent format. There, it is part of the job of nephrologists to identify potential donors in the hospital and notify them. This may have a better chance of adoption in the United States. Ultimately, there is no perfect way to select recipients of organs. The nature of the procurement rates in the United States requires that these decisions be difficult and unclear at times. There may, however, be multiple ways to optimize donation under the current circumstances.
The scene of distribution ethics has changed since the days of the Seattle God Committee fifty years ago. The focus has shifted to primarily biomedical factors in addition to likelihood of success, while still considering the other aspects of viability. We, as physicians, ethicists, and members of society, face the dilemma of making decisions in ways that reach beyond biomedical classification. This will not change, since medicine has never been—and presumably never will be—a straightforward science.