Learning about End-of-Life Care from Grandpa

“I learned that the Centers for Medicare and Medicaid Services (CMS) had previously allowed codes for “adult failure to thrive” to qualify people for hospice and that in states that had legalized physician-assisted dying less recently than New Jersey had, those codes had been used to confer eligibility. But CMS recently removed those codes from hospice eligibility, and in any event, I could not find a New Jersey physician willing or sufficiently experienced to provide this service.

I described another option to Grandpa: he could voluntarily stop eating and drinking. He’d never considered this possibility (which reminded me again how one’s family members and clinicians contribute to inequities in end-of-life care). The option intrigued Grandpa, and during subsequent visits he reinforced his plan to pursue it. I insisted that he first move into my home. I wanted to ensure the quality of his care, knowing that I could enroll him in my health system’s hospice program.

[..] When I entered his room early the next morning, he was already dressed. “I’m ready to start,” he announced, almost before I could say good morning. “But do you think I could sneak a half-cup of black coffee?”

I went through the doctorly ritual of informing him that this was his choice; it would bring him pleasure while prolonging his life. He nodded. I served. He imbibed. On the third day of nothing but six ounces of black coffee each morning, he said, “I have a confession. While washing my face this evening I took a gulp of water.” The guilt and disappointment he conveyed immediately altered my views on physician-assisted dying. For people with a consistent desire to end their life, unencumbered by mental illness or immediate threats to their survival, the only alternative — to stop eating and drinking — is just too challenging. Hospice experts around the country had warned me that less than 20% of people who try to do so “succeed,” with most reversing course because of vicious thirst.

[..] When I asked whether he was having second thoughts about hastening his death or just wanted relief from thirst, he resoundingly replied, “I just want it over with. Scott, do whatever you need to do.” In other words, I was now responsible for the success of his voluntary act — a responsibility that has been described by caregivers of other patients who have attempted to stop eating and drinking. When swabbing Grandpa’s mouth no longer provided relief, and after consultation with his hospice team, I began treating his thirst as I treat other forms of discomfort — with morphine and lorazepam. He became more tired, eventually bedbound and unable to interact, and after another 12 days that felt like a lifetime, he died peacefully.

I’ve learned many things in living this story that no amount of studying, teaching, or providing palliative care could ever reveal: the power of isolation and the countervailing force of family, the devastation of existential suffering and the paucity of options for relieving it, and the inequities at play, such that stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care. And I’ve learned that despite many problems with physician-assisted dying, it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”

Full editorial, Halpern SD. New England Journal of Medicine, 2020.10.21