Opinion | Right-to-die legislation must consider concerns of African Americans

In the 1990s, Royal Oak’s Dr. Jack Kevorkian put a national spotlight on the debate over the right of terminally ill patients to die with the aid of a physician. As Democrats reclaim their majority in the state Legislature, Michigan may be at the epicenter of this conversation again. 

Last fall, a group of Democrats introduced the Michigan Death With Dignity Act, which would legalize physician-assisted dying, also known as medical aid in dying. Patients with a terminal condition, expected to die within six months, would be able to request that a participating doctor write them a prescription for drugs that, when self-administered and ingested, would allow the patient to die on the date of their choosing.

Many Michiganders will see this legislation as reasonable and compassionate. To others, however, often people of color, this legislation is more complicated. Some fear doctors and insurance companies may deny them lifesaving treatments and steer them toward assisted suicide instead. Others are concerned that legalization will normalize this type of death as the “correct” way to approach the end of life, when their cultural beliefs and practices tell them otherwise. Central to these views are issues around equitable access to care — and of trust. 

According to a 2022 Pew Research report, nearly a quarter of the US population say they have “not too much or no confidence in medical scientists to act in the best interests of the public.” For African Americans, this mistrust has deep origins in exploitative experimental medicine and undertreatment. The best-known example — of far too many — is the 40-year long Tuskegee Syphilis Study authorized and conducted by the United States Public Health Service. Black men in rural Alabama, diagnosed with syphilis, were recruited into the study and were left untreated so physicians could follow the progression of the disease and conduct an autopsy once they died. The “study” continued even after penicillin became standard treatment in the 1950s and through 15 articles published in medical journals. In light of these horrifying details, it should be easy to see how rational many African Americans’ distrust of the traditional health care system is. 

The effort to pass MAiD in Michigan is part of a larger, well-organized right-to-die movement. Legalization advocates move from state to state lobbying elected officials with template bills, which include the promise of legislative safeguards. They also point to public polls that measure the popularity of attitudes that support the legislation. But attitudes are not practice. Safeguards only put people at ease when they trust the entity creating them and that the people within those entities will enforce them. Data from states that have adopted right-to-die legislation shows that people of color are largely steering clear of pursuing a deliberate death. For example, in racially and ethnically diverse California, the Bureau of the Census reports that 35% of persons in the state selected their racial identity as white alone, yet public health reporting shows 88% of MAiD requests come from whites. A similar pattern of use has emerged across the country where the practice is legal. 

A lesser-known outcome of Tuskegee is that it ultimately became one of several research studies later recognized as so egregious that it contributed to Congressional hearings and legislation that, ultimately, led to the national commission that approved the research standards and ethical framework that the US, and much of the world, lives with today. Passage of the Medical Aid in Dying Act in Michigan must include trustworthy safeguards, including genuine opportunities for community conversations and input — both before and after enactment — and funding for public education.

It is worth noting that people of color are not the only ones with reservations about MAiD. Those with less education and the un- or under-insured, not to mention persons who have disabilities, have expressed concerns as well.

For advocates of MAiD, the right to ingest medication that may bring about a “good death” seems morally right, compassionate, just and a matter of autonomy. But if we are to legalize the right to die in Michigan in a way that does not exacerbate distrust and inequity, we need to acknowledge and address Michiganders’ differing historical attitudes, cultural perspectives and lived experiences around end of life care.