Who Lives, Who Dies, Who Tells Your Story (May)

In May 2019, the Rights Writers discussed what perspectives have been left out of the major debates on their topics and how including them increase understanding or contribute to progress of the issue.

The pace of medical discovery is so staggering it is easy for even healthcare professionals to completely overlook. Technologies that were unimaginable a decade ago, like devices to artificially oxygenate your blood when your heart gives out, or portable machines that maintain consistent blood pressure powered by battery packs you can wear in a vest, have dramatically extended life expectancy for what were previously fatal conditions. As doctors’ ability to prolong life even in the face of chronic critical conditions increases, our conversations about quality of life tend to lag far behind. Without knowledge of the latest medical advances, how do advance directives affect the provision of medical care and one’s expectations of the quality of life to expect after a life-altering event like a heart attack or stroke? Quality of life conversations must constantly be reevaluated to assess how quality of life may be measured given the outcomes of prolonging life with critical care technologies. Organ transplantations remain some of the most dramatic and effective interventions to prolong life in a critically ill person. New technologies extend the time critically-ill people can wait on an organ transplant list before finding a match, creating a glut of potential organ recipients without a corresponding increase in altruistic organ donations. The problem these new life-prolonging critical care technologies present for medical providers, then, is how to determine who gets an organ and who does not based upon quality of life predictions. Uncertainty and ethical ambiguity cloud all organ matching strategies, but my goal is to present the creative ways some physician-bioethicists have attempted to confront the moral dilemma of how quality of life is measured considering population health disparities, how technologies to extend life impact quality of life, and whether organ transplantation will improve quality of life. Human rights of elders depend upon providing standardized, high quality care regardless of race, class, or location, and the scarcity of available organs presents an interesting challenge for equitable treatment access.

A thriving body of research exists solely to define the elusive concept of quality of life for people on different life-prolonging critical care technologies awaiting transplantation. For example, the American kidney transplant wait list, which contains over 100,000 people (and 3,000 new patients added every month) receives a new patient after individual doctors evaluate end-stage chronic renal disease or dialysis patients with any combination of three quality of life indicator scales. Medical providers subjectively determine which scales are important to consider when prioritizing patients who want kidneys to gain a clearer picture of whose quality of life would improve the most upon moving from dialysis to post-transplant immunosuppressants, which each carry their own list of positive and negative side effects. Attempts to measure quality of life while on dialysis, an exhausting and time-consuming life-prolonging critical care technology, include eleven biopsychosocial factors: effects of kidney disease on daily life, burden of kidney disease, cognitive function, work status, sexual function, quality of social interaction, sleep, social support, patient satisfaction, and dialysis staff encouragement.

Interesting efforts to tease apart differences in quality of life post-kidney transplantation have found that kidney recipients have lower quality of life scores than the general US population and African-Americans have worse quality of life than Caucasians. Little research exists on how long-term survivors of organ transplantation, which is becoming increasingly common as the drugs and technologies to facilitate organ matching become more effective, affects quality of life in transplant recipients. Furthermore, the worrying finding that post-organ transplantation quality of life is reduced in African-Americans suggests that health disparities due to racism and systematic socioeconomic marginalization affect quality of life even after patients receive the same treatments at the same hospitals. If one accepts that health is a human right, then health disparities must be eliminated before an equal society can be achieved. Transplantation specialists should prioritize research into quality of life improvement among their organ recipient patients of color to elucidate the population groups experiencing the worst post-transplant outcomes and come up with a strategy to combat this unacceptable disparity. Some disparities are harder to overcome than others, however; the United Network for Organ Sharing, which matches all organ donor and recipient pairs in the Unites States, insists upon social support as a qualifier of transplantation. Those patients without at least three family members or friends who can devote significant time to coordinating their daily medical care will automatically be disqualified from receiving a lung donation, for example. Other organ transplantation programs like that for kidneys prioritize potential recipients who have a family or friend willing to donate to themselves or another potential recipient in what is called a “paired donation.” If due to socioeconomic marginalization, patients of color are less likely to meet these social support indicators, then they have less hope of receiving the life-prolonging benefit of organ transplantation. Doctors have good reason to want the limited supply of donated organs to go to patients willing and able to take good care of themselves, but social support indicators should be given a critical appraisal if they introduce racial health disparities into organ matching.

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            Life-prolonging technologies have dramatically increased the number of patients on organ matching waiting lists, yet quality of life scales traditionally used to determine the best candidates for organ transplantation fail to keep pace with how changing technologies impact quality of life. The number and type of scale used varies by medical provider, and the scales themselves may be racially biased, indicating the need for further research and activism surrounding equitable organ matching. When need outpaces demand, ethical considerations of quality of life and the right to life-prolonging treatment become increasingly vital. Who gets a donated organ matters because transplantation is so often a few extra years of life, a chance to determine who lives, who dies, and who tells their own story.