A recent article from Kaiser Health News, “Vodka, folk rock and secobarbital: Terminally ill man chooses his last day,” provides a rare description of the internal and external processes, feelings, and thoughts that a person might go through using one of the physician-assisted dying (PAD) laws in Oregon, Washington, Vermont, District of Columbia, Colorado, California, and Hawaii.
Reporter JoNel Aleccia describes Aaron McQ’s medical problems (all quotes are from her report):
The 50-year-old Seattle man — a former world traveler, triathlete and cyclist — learned he had leukemia five years ago, followed by an even grimmer diagnosis in 2016: a rare form of amyotrophic lateral sclerosis, or ALS. An interior and urban designer who legally changed his given name, McQ had been in pain and physical decline for years. Then the disease threatened to shut down his ability to swallow and breathe.
McQ’s other symptoms included involuntary shaking of his legs, hoarseness, and pain. He is one of about 8% of those who have used Washington’s PAD law who has a form of ALS.
McQ described his illness as “terrifying . . . like waking up every morning in quicksand.” He agreed to discuss his experience with Kaiser News to help provide more understanding about how users feel after qualifying for PAD. Over 3,000 terminally ill residents in the US have used PAD laws since Oregon’s first took effect twenty years ago.
Once he was approved for using Washington’s PAD law, McQ’s choice allowed the timing of his death to become certain, rather than unknowable, and in his control. McQ said, “I’m not wanting to die. I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise.”
A friend obtained 100 tablets of the prescribed sedative secobarbital from a pharmacy for him, but McQ kept putting off the time he was ready to end his suffering and avoid the certainty of worse to come. For those not yet in the worst condition at the time of their approval for PAD, the reasons McQ delayed his exit are common: a major holiday (Christmas), a visit from family, a friend’s birthday, a wedding of another friend. McQ explained, “No one is ever really ready to die. There will always be a reason not to.” Sometimes, patients accepted under a PAD law and not in great distress will delay taking the drug for the birth of a grandchild or to take a special trip.
Aleccia reports that for those in Oregon who have used its PAD law, “the median time from first request to death is 48 days, or about seven weeks. But it has ranged from two weeks to more than 2.7 years.” Washington’s law has been in effect for about nine years (contrasted with Oregon’s twenty years of experience with a similar law). The Washington State Department of Health reports that the time from first request for lethal medication to death in Washington has varied from two weeks to just over two years, which is similar to Oregon’s experience.
For ALS patients, the timing of death can be complicated by the slow onset of symptoms and periods of stability that may occur in the progression of the disease, explained further in a post by Ted Ballou.
Like many people associated with the Final Exit Network (FEN), McQ had supported medical-aid-in-dying (MAID) for years. He had experience as caregiver for his grandmother, “who he said begged for death to end pain at the end of her life.”
About four months after McQ obtained the secobarbital, his worsening condition led him to seek home hospice care. He decided against transferring to a residential hospice facility that was available to him, preferring to die at home. He set several dates, only to change his mind as each date approached, but he knew his window of opportunity–the time when he was capable of self-administering the secobarbital after taking a necessary antiemetic to help keep the barbiturate down–was beginning to close. Self-administration is a legal requirement in all of the US jurisdictions with PAD laws, in contrast to Canada, where lethal drugs can be injected by medical personnel.
McQ chose April 10 as his final exit day. His long-time friend and healthcare proxy, Karen Robinson, came over early that afternoon to drink coffee and visit. Gretchen DeRoche, a volunteer with the PAD-resource group End of Life Washington, arrived at an appointed time to help supervise the process McQ would use to end his suffering. At 6:00 pm, McQ took the anti-nausea medication. Four close friends, in addition to Robinson, were gathered at McQ’s residence to provide comfort. They went through his music collection to find music that McQ would like.
Aleccia describes the process: “DeRoche went into a bedroom to open the 100 capsules of 100-milligram secobarbital, one at a time, a tedious process. Then she mixed the drug with coconut water and some vodka. Just then, McQ started to cry. . . . After that, he said he was ready. McQ asked everyone but DeRoche to leave the room. She told him he could still change his mind.” DeRoche said, “If you take this medication, you’re going to go to sleep and you are not going to wake up.” McQ then “drank half the drug mixture, paused and drank water. Then he swallowed the rest. . . . His friends returned, but remained silent.”
DeRoche explained to Aleccia that “They just all gathered around him, each one touching him.” Within six minutes of ingesting the secobarbital, McQ was dead.
Aleccia reports that on June 30, McQ’s friends gathered in Seattle for a “happy memories celebration” of his life, as Robinson describes it. Several friends kayaked out into Lake Washington and scattered McQ’s cremated remains in the water, along with rose petals.
Robinson offered some additional thoughts about the death of her close friend: “It’s really tough to be alive and then not be alive because of your choice. If he had his wish, he would have died in his sleep.”
My experience discussing death with hundreds of people includes a nearly universal preference for death to be peaceful and painless, with friends and family near, with an opportunity to say goodbye to those closest to the dying person, with personal affairs in order, and in the control of the person dying. McQ achieved all of these preferences, though he may have preferred to go quietly in his sleep, without the apparent burden of deciding the time of exit himself. Certainly, his death was not a surprise.
Catherine Porter wrote last year in the New York Times about another man who exited in Vancouver–”Having control over the terms of his death made him feel empowered over the disease rather than crippled by it.” This seems, too, an accurate description for McQ’s exit, as sorrowful as it may have been.
Thanks, Lamar. A well-written article.
It certainly didn’t appear that dealing with a state bureaucracy was any sort of hassle or at least the article didn’t mention that part of the PAD process. McQ certainly had plenty of caring support. It appears to have been as well done a Final Exit as one can imagine.
Still I am a little confused . . early in the article it mentioned 100 tablets later in the article it mentioned opening 100 capsules . Does it take that much of the drug to kill a man? PAD stands for Physician Aid in Dying and a physician injecting 50 ml of Nembutal would have been a lot easier than swallowing anti-nausea medication followed by gagging down 10,000 mg of secobarbital. So maybe it wasn’t the most placid Final Exits.