A gardener, marimba player and mother of two who is dying of ovarian cancer and considering medical aid in dying meets with death doula Nancy Simmers (at left). Death doulas such as Simmers listen to patients as they review their lives and assist them in navigating the medical system, in line with Washington’s Death with Dignity Act. (Kai Uyehara / Salish Current photo © 2023)
There may be family and friends nearby, or there may be none but a dedicated caretaker at the bedside when a terminally ill person chooses to die. The prescribed lethal medication, a compound of five different drugs, is mixed into a cup of apple juice. After ingesting the medication, the patient falls into a deep, coma-like sleep within minutes. Within the next few hours, they pass away.
Facing death can be scary, sad or traumatic; it can be peaceful and relieving. It’s different for everyone, but for those using Washington’s Death with Dignity Act, it can be planned.
Washington passed the act in 2008, allowing terminally ill adults expected to live less than six months to request lethal medication from medical or osteopathic physicians. Patients must be able to self-administer the drug. They must make two separate requests 15 days apart with two physicians and be of sound mind. Two people, neither required to be family, must witness the patient signing the request and declare that the patient is competent and acting voluntarily. Patients may change their minds at any time.
This legislative session, companion bills HB 1281 and SB 5179 aim to expand access to the act’s provisions for those already qualified. They would authorize advanced practice registered nurses and physician assistants to sign off on Death with Dignity, reduce the 15-day waiting period to seven days and prohibit healthcare providers from barring employees from participating in the act outside the scope of their employment, among other provisions.
“We are trying to ensure that, community by community, people have this option,” said cosponsor Sen. Liz Lovelett, [D-Anacortes]. She’s heard popular support for the act among the elderly community in her hometown.
Rep. Alex Ramel [D-Bellingham] is a cosponsor of the House bill.
Owning the choice
Hospice and palliative care help ease suffering for the terminally ill and are an integral part of the Death with Dignity process. Nearly all — 91% — who died after taking the lethal medication in 2021 were enrolled in hospice, the Department of Health reported.
“The amount of resources and access to comfort provided through hospice is incredible, even if it’s not just for the patient, but for the family or loved ones,” said Cassa Sutherland, client services manager for End of Life Washington, an organization that aids the terminally ill in navigating the Death with Dignity process. “Some of our volunteer physicians won’t even prescribe these medications unless a client is willing to get on hospice.”
PeaceHealth hospice connects patients with nursing, medical social work, a team of doctors and spiritual and bereavement support, any of which patients may decline if they deem it burdensome or excessively expensive, said Ashley Aiken, supervisor of holistic care team for Whatcom Hospice. Aiken noted that hospice is covered by Medicare, Medicaid and most private insurances at 100%.
PeaceHealth, a Catholic-owned provider, does not participate in Death with Dignity, but staff may inform patients about End of Life.
At present there are no in-patient hospices in Whatcom, Skagit or San Juan counties where a patient may be permitted to use lethal medication.
Sometimes, the physical or psychological suffering of patients can’t be sufficiently palliated by hospice care. Death with Dignity may be chosen by patients plagued by pain, lack of agency or not wanting to receive further care, Sutherland said. Some want to control the timing and manner of their death.
“The ability to make a choice for oneself when too much is too much is an integral part of our humanity,” said Lashanna Williams, a death doula in Seattle. “This means avoiding a death that is inevitably really painful, scary and uncomfortable.”
Opponents of the act refer to the process as assisted suicide. Proponents call it medical aid in dying. When someone dies after taking the lethal medication, their death certificate lists their underlying condition as the cause of death.
“People who [participate in Death with Dignity] leave in a way that is so much more whole and so much less riddled with fresh grief and pain,” Williams said. “I have witnessed an overall sense of calming. They know that it’s now a hundred percent up to them and therefore their body is feeling less stressed, less anxiety.”
‘Season of losses’
Mary Rivkin is sitting on the edge of the process today.
Rivkin was born and raised in Bellingham and taught science and outdoor education from preschool through university. At 85, she has incurable Parkinson’s disease.
She no longer drives or bicycles, and walks with a cane, but exercises as much as possible and attends pedaling sessions with other Parkinson’s patients. She needs part-time help with cooking and cleaning and has the bank pay most of her bills, which she otherwise might forget.
“What a cruel and stupid disease it is,” Rivkin said. “It affects everything. It’s debilitating and humiliating. It’s a season of losses.”
For Rivkin, the option of Death with Dignity means she has choices to plan a sensible departure.
Rivkin doesn’t see the provisions of the act as granting autonomy, a word frequently used in association with it by proponents. She views life and death as cooperative ventures. Contemplating the decision to die means thinking of her family and loved ones, too.
“I certainly don’t want to die in a way that’s expensive,” Rivkin said. “I feel responsible for my children and my siblings and I shouldn’t squander a lot of money or other people’s money on end-of-life treatments that just keep you alive.”
After Rivkin’s son looked into end-of-life options with her and discovered that her local physician wouldn’t discuss medically assisted death, they connected with a neurologist at the University of Washington who would be available to record Rivkin’s request for lethal medication, if she were to make it.
The doula’s role
As potential Death with Dignity patients consider their deaths and examine their medical options, some consult death doulas who would help them process and navigate the emotional and logistically arduous journey.
“We don’t talk about death, and because we don’t talk about it, we get really frightened about what death is,” said Nancy Simmers, who shares a local death doula partnership with Andrea Fenwick; both are co-founders of VSED (Voluntarily Stopping Eating and Drinking) Resources Northwest, focusing on cases who don’t qualify for physician-assisted death.
When people come to Simmers and Fenwick for an entry point to VSED or Death with Dignity, some know what their options are already, and others have no idea because there are few education opportunities, Fenwick said.
Because mental capability and self-administration are required, people with neurodegenerative diseases like Alzheimer’s, Parkinson’s, ALS and brain tumors likely won’t qualify, Fenwick said. For these people, VSED is the only other option for taking control of the time and manner of their death. And it’s not for the faint of heart.
VSED does not require a physician’s permission, though it requires 24/7 caregiving and usually hospice support, Simmers said. While physician-assisted death happens quickly, VSED death takes place over a week or two during which the patient must deal with hunger and thirst.
Death doulas, much like birth doulas at the other end of life, assist in a momentous transitional process. Doulas talk with clients, connect them with resources and act as caregivers. Hospice workers do similar work, but doulas may work with people who haven’t been given a six-months-left prognosis, Simmers said.
As clients progress through the medically aided death process, doulas can help them with details such as timing, location, people to be in attendance and body disposition afterwards, said Williams. For clients who are not in a position to die at home, death doulas and End of Life Washington volunteers can help with accessing accommodations where patients can take the medication.
PeaceHealth St. Joseph Medical Center and Whatcom Hospice don’t permit ingesting Death with Dignity’s lethal cocktail on their premises, but some advocates have stepped in to meet the need. One, Kelly McClurg, a retired volunteer client advisor for End of Life Washington, transformed the upstairs of her home on the edge of Bellingham into A Place to Die.
No one has used McClurg’s space yet, but 17 patients have taken their lethal cocktail at Williams’ facility in Seattle. In 2021, there were between 10 and 19 Death with Dignity participants in Whatcom County, according to the Department of Health, while there were more than 40 in King County.
Hospitals don’t advise patients about outside places to die, Williams said. Patients can complete an online form or call A Sacred Passing, the organization that operates A Place to Die, to make plans.
People may be angry when they come in — about dying, about having to take their medication in a stranger’s home — or just eager to go, Williams said. Others may walk in happy and sit down with their loved ones to talk in the room for a while as their premedication settles.
Williams works to make the room comfortable, adjusting temperature, light, music and scent to patients’ preferences. She provides two options, a bed and a chair, as some people are tired of lying in beds and want to die sitting up with family and friend on either side of them.
“For folks who are choosing medical aid in dying, it looks a whole lot different than someone who is dying of an accident or a traumatic death; you are afforded a little bit of time for planning,” Williams said. “It’s much easier and gentle for the spirit, there’s conversations, goodbyes that happen, there’s I’ll see you later.”
Debating changes
The right to physician-assisted death is determined by state legislation, with 10 states legalizing it nationwide. Within the states, religious objections may limit who may use the process.
Both proponents and opponents of Washington’s Death with Dignity Act and its proposed amendments want the terminally ill to spend their last days in dignity. Some physicians, disability rights activists and religious organizations voiced their contention for the amendments at public forums including Senate and House hearings earlier this session.
“We’re called to respect life in every stage that it’s in, not just in our prime and able to be a productive part of society,” said Adrienne Joyce, director of policy and communications for the Washington State Catholic Conference (WSCC). Catholic teaching compels respect for the natural death process, Joyce said.
“While all health care professionals share an important role in providing care to patients, their skillsets are not interchangeable with those of a fully trained physician,” American Medical Associatioin (AMA) CEO James Madara wrote in a letter of dissent to the House of Representatives in January regarding the amendments in Washington. [Graham Short, Director of Communications for the AMA, declined an interview with Salish Current.]
If the amendments pass, patients in less populated areas without access to physicians and who receive care from physician assistants and nurse practitioners would be able to access the provisions of Death with Dignity more easily, Sutherland countered. This would also support continuity of care from providers who are already entrusted with other aspects of a patient’s care.
The AMA also objected to the companion bill’s pursuit of a seven-day wait period between documented requests instead of 15 days, writing that “the ultimate choice of death over life is often taken under duress of painful and debilitating illness and this most intimate decision deserves appropriate space to ensure it is not reached emotionally or impulsively.”
Opponents like the AMA and the WSCC worry that depression could sway a patient’s judgment. A two-week waiting period could act as a safeguard against potentially changing emotional states.
“Parkinson’s interferes with dopamine production and serotonin, but why wouldn’t you be sad anyway? Why wouldn’t you be depressed leaving everything you’d ever known?” Rivkin said. “I hate to leave all the kids. It’s a sad situation but it’s necessary. We wear out.”
Advocates for Death with Dignity like Williams and Sutherland say that a 15-day waiting period is too long. Besides dealing with pain or other symptoms, patients have to find willing physicians and they may succumb to their illness during the waiting period, Williams said. In her time working with those taking medical aid in death, Williams has had only one client change their mind about the medication; others who didn’t follow through waited too long to take it, or died before they could.
Opponents worry that there are no safeguards protecting the disabled, poor and disenfranchised from being coerced into taking the medication.
“It’s difficult to care for a loved one,” Joyce said. “Sometimes I think they could give the impression to a loved one (who’s terminally ill) that they’re no longer worthy and they’re too much work, and that therefore they should end their life.
Lovelett expressed a different perspective, noting that “there is no evidence to suggest that people are being coerced into it.”
Medically assisted deaths account for less than half a percent of Washington’s deaths, Sutherland said. The lethal medication was distributed to 400 individuals in Washington in 2021, according to the Department of Health. Of those, 291 were confirmed to have died from taking the dosage, and 44 died without having taken the medications. The outcome of the remaining participants is unknown.
Rivkin has been discussing palliative care with her neurologist, with the idea that discussing Death with Dignity could follow further down that road.
Rivkin said she thinks she’d begin talking about Death with Dignity if she were to lose competency in many areas of her life and control of basic functions
“But now that I’m closer to (losing competency) I don’t know what kind of compromises I’ll make,” she said. “I don’t know what exactly will cause me to say ‘enough’.”
— Reported by Kai Uyehara