Who will exercise the right to die?

March 27, 2016

This article originally appeared in the Los Angeles Times on March 27, 2016

As California’s End of Life Option Act takes effect in June, data from states where aid in dying is already legal raises a question: Who will use the new law? In Oregon, Washington, Montana and Vermont, experience shows that participants will be few in number, well less than 1% of those who die each year. We also know, based on 18 years of data from Oregon, whose Death with Dignity Act was the first such law in the nation, that most of them will be older, white and well-educated.

That puts to rest the worries many have had — that masses of people, particularly the disadvantaged, will be targeted and coerced into dying if physicians are allowed to prescribe a lethal dose of medicine for terminal patients. But in a diverse state like California, the data highlight another concern: The right to die may not be readily available to many and even most people.

The modern aid in dying movement developed alongside medical advancements in the 1960s and ’70s — CPR, respirators and defibrillators — that made it possible to save lives that otherwise would have been lost. But those advances also posed new challenges for end-of-life decision making. At the same time, some terminally ill patients found that “doing everything” to live put the emphasis in the wrong place: length of life over quality of life.

Nearly 97% of those who have exercised the right to die [in Oregon] were white

Death with dignity court decisions, initiatives and legislation, passed and pending, represent a consensus response to these concerns. Most of the laws, including California’s, closely follow the Oregon model, establishing multiple hurdles for terminally ill patients and highly regulating aid in dying.

With some variations, the protocols look like this: To get a prescription for lethal drugs, patients must be adults, and they must be deemed by two doctors to have six months or less to live. Patients must request a lethal prescription verbally and in writing, with a waiting period in between. If their mental competence is questioned, a psychiatrist must be consulted. Once patients obtain a prescription, they choose when to fill it and when to self-administer the drugs.

So far, Oregon’s long-term data on “DWDA deaths” provide the best profile of who uses aid in dying. From 1998 through 2015, 991 Oregonians died from ingesting DWDA drugs. A majority were over the age of 65 (nearly 70%); slightly more were male (51%) than female. Most were diagnosed with terminal cancer (77%). Almost all were enrolled in hospice care (90%) and died at home (94%).

The racial and socioeconomic demographics are also unequivocal: Nearly 97% of those who have exercised the right to die in Oregon were white; 0.1% were African American (there has been just one African American DWDA death in Oregon since 1998); 1% were Latino, 1.3% were Asian.

There are many reasons for this whites-only skew, including Oregon’s relatively small minority populations. But even where the percentages are higher, it’s probable minorities will make use of the law in low numbers.

For starters, minorities figure heavily among the millions of Americans with little or no access to quality healthcare, and that includes aid in dying. According to the U.S. Department of Health and Human Services, compared to whites, minorities receive worse medical care and less of it on about 40% of quality and access measures. Perhaps as important, for some in these populations fear of not getting enough treatment at the end of life, rather than too much, could be a factor.

The African American community, for instance, is still marked by 1972 disclosures about the Tuskegee experiments, in which treatment was withheld from black men who were the subjects of syphilis research. The number of African American organ donors is disproportionately smaller than that of whites, and studies suggest this is largely because many blacks fear that doctors would rather harvest their organs than treat them.

Latinos (20% of the Oregon population; 40% of California’s) also rarely use aid in dying. This is partly explained by age: Latinos are a much younger population than whites (median age, 29, compared to 45 for whites). For Latinos (and African Americans), religious and cultural opposition to aid in dying also plays a role. Many churches, and especially the Roman Catholic Church, have been vocal and influential opponents of death with dignity laws.

When demographics such as education level and insurance type are analyzed along with race, Oregon’s data tell us that it is the privileged who use aid in dying. They are well educated — since 1998, nearly 72% had at least some college. “The more educated you are, the more choices you have,” says Kat West, director of policy and programs for Compassion and Choices, a nonprofit organization that advocates for aid in dying. And they have healthcare resources: Nearly 60% were covered at least in part by private insurance.

Insurance coverage may be particularly important. According to a National Public Radio report, in February, the cost of a lethal dose of the most commonly prescribed aid-in-dying drug — the sleeping pill Seconal — rose from $1,500 to more than $3,000. Even a less expensive drug cocktail costs about $400. Insurance may cover at least some of the cost; it is up to each plan. State Medicaid funds are available in Oregon and California, but federal funds cannot be used for aid-in-dying drugs.

Given the nature of death with dignity laws, it isn’t surprising that only a small number of people choose to make use of the right to die. It’s a complex process. And even among those who qualify for the drugs, know about the law, have access to doctors and have the wherewithal to pay for the prescription, there will always be many who would never consider hastening their deaths.

But if the premise of aid in dying is to prevent pain and suffering among terminal patients — something people of all races and from all walks of life experience — the narrow pattern of use that shows up in the data should give us pause. Choice may be the primary factor behind the predominance of white, privileged patients seeking and using aid in dying, but surely it also represents yet another measure of disparity in American healthcare.

Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University. Her book, “The Good Death: An Exploration of Dying in America,” was published last month. She will speak at USC’s Annenberg School on Tuesday.

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