Thalia DeWolf, a nurse for Bay Area End of Life Options, at her home office in Berkeley on April 28, 2020. (Beth LaBerge/KQED)
Nurse Thalia DeWolf has been answering a lot of phone calls recently from the patients she calls “the planners” — people who have thought a lot about the kind of death they want, and the kind of death they don’t want.
Normally, these are people with a protracted terminal illness who are interested in taking life-ending medications to avoid prolonged suffering. Increasingly, she’s been hearing from her regular cancer patients, and otherwise healthy people, who are afraid of dying from COVID-19.
“They really want control over their end of life,” said DeWolf, a nurse with Bay Area End of Life Options. “They don't want to be whisked into a system that's already overwhelmed and be ventilated and possibly be away from their family members.”
Healthy callers are asking for advice about how to write into their advanced directives for medical care that they want to take life-ending medication if they became ill from the coronavirus to ensure a quick, peaceful death.
“I have to tell them, ‘No, you cannot,’” DeWolf said. “They don't realize there are specific steps that you have to go through.”
California legalized the practice referred to as “aid in dying” or “death with dignity” in 2016. It is now one of 10 states that allow terminally ill patients to take lethal medication to hasten their death. California’s law includes several safeguards to address concerns about coercion, including a 15-day waiting period between a patient’s first request for the medication and when they can actually get it. Patients also have to be physically capable of ingesting the medication themselves.
These rules make most people who contract COVID-19 ineligible.
“What I commonly say to them is that medical aid in dying isn't likely going to be an option for you,” DeWolf said of her interested callers. “By the time you're terminal from coronavirus, you're probably unconscious, and you don't have capacity to make medical decisions.”
Social workers at Death with Dignity, a national advocacy organization based in Portland, Oregon, have also been answering a steady increase in calls about the coronavirus. About 80% come from people who want these medications “just in case” the pneumonia they have proves to be the coronavirus, or so they can “be ready,” Executive Director Peg Sandeen said.
This kind of grassroots interest could influence future legislation. The group was sponsoring death with dignity bills in New York, Maryland and Massachusetts before state legislatures closed down because of the pandemic. They have plans to add another three states to their efforts next year. But Sandeen believes legislation that is proposed directly in response to the coronavirus will mainly address advance planning.
“Because it's all about this desire to have control at the end of life and to have whatever your wishes are, play out,” Sandeen said.
The other 20% of their calls right now, she said, are people who want to know what their advance directive needs to say so that if they become ill from the virus, they want any ventilator that would have gone to them to instead go to someone else.
“They feel like they're older or they have a terminal illness, or for whatever reason that they feel like the ventilator should go to health care workers or to younger folks,” Sandeen said.
The pandemic has also raised questions for people who already have a terminal illness, like Mike Ellis, a retired engineer who lives in Petaluma. He has Lou Gehrig's disease, also called amyotrophic lateral sclerosis, or ALS, which attacks nerve cells that control the muscles.
He’s already been through all the steps to qualify for medical aid in dying. He believes he’s got a couple of months left to live, but under the law, he can take the medication whenever he wants.
“If I got the coronavirus, I'd probably want to initiate it right then,” he said.
Ellis, 64, was diagnosed with ALS three years ago and has since lost his ability to bike and to walk. Eventually, he’ll no longer be able to eat, talk or breathe on his own. But Ellis isn’t interested in sticking around for a death like that.
“Death in America has become inhuman and antiseptic,” he said. “I didn’t want to be put on a ventilator, to be bedridden and to end my life that way.”
Ellis wants to decide when enough is enough. For him, he says that will be when he’s unable to transfer himself from his wheelchair to his bed or the toilet on his own, or when he can’t eat his wife’s “incredible” cooking and needs a feeding tube.
“This disease has taken so much from me, robbed me of so many things,” he said. “This is the one last thing that I – I want my hand on that lever.”
If Ellis gets COVID-19, he is guaranteed to die from it, according to his doctor, Lonny Shavelson. His respiratory system is already too weak. When Ellis had a mild cold in February, he didn’t have enough strength to cough.
“Oh, man, it was bad,” Ellis said. “I thought I was drowning. My body went into a panic attack mode.”
If he develops the coronavirus, Ellis says, he wants to take the fatal medication right away. He doesn't want to suffer like that again, and, he's afraid that if he waits and loses his ability to ingest the drugs himself, he’ll be stuck with a death he didn’t want.
“Coronavirus kind of accentuates the reality that surprises happen,” said Shavelson, who runs Bay Area End of Life Options with DeWolf.
For their typical patients who have ALS or cancer, figuring out the timing of when patients should take their medications to die is already a complex, delicate balancing act.
“Then a fear of an acute illness along the way that might incapacitate you and then you die of respiratory failure, being unconscious and confused – exactly the way you didn't want to die – that does complicate the thought process,” Shavelson said.
Now Shavelson talks to Ellis once a week, discussing symptoms and risks and likelihoods, so if he does become ill from the coronavirus, he will have the information and guidance to act quickly to take the medication.
For Ellis, that will be a simple affair.
“I don't think I'm going to have an elaborate plan,” he said. “I think it's a quiet goodbye.”
Until then, he’s living a quiet life: reading and doing a crossword puzzle with his wife in the morning, watching movies together and eating her homemade oatmeal chocolate chip cookies.