DWD Laws Leave More Unanswered Than They Address

Katie Engelhart is the author of The Inevitable: Dispatches on the Right to Die (St. Martin’s Press, 2021). She is a George Polk award-winning writer and reporter whose work has been featured in The New Yorker, The New York Times, The Atlantic, and other publications (https://www.katieengelhart.com).

 This blog post is adapted from The Inevitable: Dispatches on the Right to Die (St. Martin’s Press, 2021).

According to a 2017 survey by the Kaiser Family Foundation, about half of Americans think that patients do not have enough control over end-of-life medical decisions. Endings, of course, are not always controllable. Still, it is worth asking whether this is an acceptable and philosophically coherent status quo.

In the United States, the laws inch forward. Every few months, another state legislature considers passing a death-with-dignity (DWD) law of its own, and once in a while, one does. It seems likely that the so-called Oregon model will expand outward and eastward. In turn, religious institutions are digging their heels in.

But so are national medical groups. A June 2019 meeting of the American Medical Association’s House of Delegates voted 392-162 to reaffirm the group’s opposition to physician-assisted death. “The wheels are coming off the bus on assisted suicide,” warned one doctor-delegate. “We do not have the luxury of time to continue to fail to act … unless we’re willing to embrace widespread euthanasia.”

Also in 2019, the National Hospice and Palliative Care Organization began a reexamination of its long-standing opposition to the practice. “The fact that we were even looking at this policy caused such outrage,” Edo Banach, the group’s CEO, told me. “I was getting calls from Catholic bishops!” Banach was new in the job, a lawyer and a liberal who supported the DWD cause. Nevertheless, in the course of his deliberation, he was persuaded to leave things as they were.

Away from the public eye, new questions about the practice of physician-assisted death continue to emerge. Should doctors actively present the option of assisted death to their dying patients – because, of course, doctors are meant to present us with all of our options? Or should they wait until their patients ask about it, lest the simple act of providing information be interpreted as an endorsement or a sign that the doctor has lost hope?

Can assisted death ever be something that hospitals advertise? If a doctor refuses to assist in death, should he/she have to refer an inquiring patient to a doctor who will? Is physician-assisted death better carried out by a small number of specialized physicians, or by family doctors? The specialists would quickly become skillful, but the family doctors are more accessible. Also, specialization might ghettoize assisted death – and make it seem like something separate from normal end-of-life medicine.

We can go on: Down the line, should aid-in-dying patients be allowed to donate organs? Of course, that would require that the patients die in a hospital, via injection, to preserve the health of the vital parts – so we would need to change the death-with-dignity rules.

While we’re at it, why not go one step further to really maximize the chances of successful transplant: Allow organs to be removed from patients who are under anesthesia but still living, in such a way that the surgery itself would kill them? No doubt, some charitable patients would want the option of “death by donation,” as researchers call it. The question is whether the state should allow it: whether death by donation would amount to an odious ethical breach or would just be an efficient way to make the best of a bad situation – for the good of us all.

As they are, existing Oregon-style DWD laws are defective. They grant rights to some patients but not to others, in ways that can seem arbitrary and unwise. A breast cancer patient who can swallow lethal medication might have the right to end her life with a doctor’s help, but not a brain cancer patient whose tumor has robbed him of his ability to move and to swallow. A person with six months left to live might be declared eligible, but not a chronically ill person in 10 times more pain. Why should someone who is approved to die be made to wait for 15 days, suffering the whole way through? And what do we do about all the people who would rather be dead than have dementia?

Right-to-die opponents see these deficiencies as a sign that we must rescind the laws, to prevent an inevitable slippery-slope expansion. Proponents see the same evidence as proof that we should expand the laws – and redraw the line in the sand, between eligible and ineligible, at a place that is more flexible to the different ways people hurt.

Elsewhere, impatience with the law is growing. In Britain, former Supreme Court Justice Lord Jonathan Sumption made national news by declaring there was “no moral obligation to obey the law” when it came to assisted suicide. Sumption was not advocating for the legalization of physician-assisted death per se – in fact, he said the existing ban was good and necessary, to prevent abuse – but he argued that “courageous friends and families” would and should continue to help loved ones, on the sly. “I think the law should be broken from time to time,” the former justice said. He acknowledged that his position amounted to an “untidy compromise.”

But the United States is a uniquely imperfect laboratory to be experimenting with these moral principles. Unlike other countries where physician-assisted death is legal, the United States offers no universal healthcare access. In states like Oregon, there is a right to die but not a corresponding right to medical care.

Already, stories have appeared in local newspapers about people who were denied exotic and expensive treatments by their health insurance companies, but who qualified for a state-subsidized assisted death. “In this profit-driven economic climate, is it realistic to expect that insurers are going to do the right thing, or the cheap thing?” asked Helena Berger, president of the American Association of People with Disabilities, in a 2017 article.

In Oregon, at least, aid-in-dying proponents are buoyed by evidence that the worst slippery-slope predictions of the 1990s have not played out. The law has restrained itself. A study in the Journal of Medical Ethics revealed that the rates of physician-assisted death in the state “showed no evidence of heightened risk for the elderly, women, the uninsured … people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illness, including depression, or racial or ethnic minorities.” Assisted death has also not replaced palliative and hospice care.

Broadly, in the states where physician-assisted death is legal, it has remained rare and has mostly been used by patients who are very close – weeks or days – to the end. The bioethicist Dr. Arthur Caplan, once one of the country’s most ardent critics of assisted dying, was so persuaded by this evidence that he now supports the passage of additional death-with-dignity laws. “Money was the source of my concern,” he told me. “But Oregon and Washington didn’t have those abuses. Killing poor people – it didn’t happen. There was no ‘Mom was trundled off to save money …’ None of that. So I flipped.”