Marie winced with each step as she used a walker to move around her tiny San Diego apartment on a recent overcast morning.
The 52-year-old former intel analyst, who did not want her full name used to protect her medical privacy, is afflicted with three rare diseases: a connective tissue disorder called Ehlers Danlos syndrome, mastocytosis which causes immune cells to collect, and a heart condition known as postural tachycardia syndrome. Her 15 medications barely give her comfort.
“I have intractable migraines, and it affects my eyes,” Marie said. “All my joints are unstable at this point, and so it's very painful with my body trying to grab on, and it creates knots. I am just never comfortable. Even laying down can be painful.”
Last year, Marie was approved by doctors for a lethal drug cocktail that would allow her to die peacefully instead of having to endure what she called a “Dante’s Inferno” of suffering toward the end.
She has that right in California under the state’s End of Life Option Act. The law gives terminally ill people with six months or less to live the choice to “self-ingest” a fatal dose of medication under the supervision of a doctor. This most often happens in a hospice.
But it wasn’t easy for Marie to find a hospice in San Diego County that participates in medical aid in dying. A KPBS review of 94 hospices in the county showed only a handful of local hospices partake in the practice.
All California healthcare entities, including hospices, must post their policies on medical aid in dying on their websites. Nearly 16 months later, KPBS found that fewer than 10 are following the law.
The End of Life Option Act allows hospices to decline to participate. But since January 2022, it has required all California healthcare entities, including hospices, to post their policies on medical aid in dying on their websites. Nearly 16 months later, KPBS found that fewer than 10 are following the law.
“I'm incredibly troubled by that finding,” said state Sen. Susan Talamantes Eggman, D-Stockton, who co-authored the bill that created the posting requirement. “It’s the law that (hospices) are supposed to (post) what their policies are.”
California is one of 10 states as well as Washington DC that allows medical aid in dying. National polls — including Gallup and Susquehanna — show most voters want the option of ending their lives if they become terminally ill. But it is a controversial issue in America, with opponents often citing religious and moral grounds for their objections to medical aid in dying. Just last week, disability rights advocates in California sued to overturn SB 380, arguing the law makes it too easy for vulnerable people to take their own lives.
The American Medical Association (AMA) long opposed the practice. The group modified its stance in 2019 to say doctors can provide the assistance “according to the dictates of their conscience without violating their professional obligations.” The AMA also said physicians who don’t want to participate are following their professional and ethical obligations.
Meanwhile, there is no public agency explicitly in charge of ensuring that hospices in San Diego County, or anywhere in California, comply with the requirement that they inform prospective patients of their medical aid in dying policies.
Eggman, who is a former hospice social worker, said hospices that don’t abide by the law may still face scrutiny.
“This year, we're working a lot more on oversight, and that's exactly the kind of thing that I think is right for an oversight committee hearing,” Eggman said.
In the interim, the lack of transparency is a problem for people who are terminally ill because of the crucial role of hospices when patients choose medical aid in dying.
Of the 2,422 people who took medications to end their lives since the state's End of Life Option Act became law in 2016, nearly 89% were receiving hospice or palliative care, according to the California Department of Public Health.
KPBS reached out to several local hospices that don’t articulate their position on medical aid in dying on their websites. Some didn’t return calls. Another refused to answer questions. The Elk Grove-based California Hospice and Palliative Care Association also declined to comment.
Sharp Healthcare only posted their hospice policy on medical aid in dying last week after KPBS made inquiries.
Aid in dying advocates offered a range of reasons why most local hospices are failing to disclose their views on the topic, from discomfort with the law to lack of enforcement to greed and ignorance.
Aid in dying advocates say the notice is crucial. They offered a range of reasons why most local hospices are failing to disclose their views on the topic, from discomfort with the law to lack of enforcement to greed and ignorance. They say the opacity adds to the misery of people, already suffering from agonizing illnesses, in their final days.
”Transparency is everything, and people want their medical providers to be transparent with them,” said Samantha Trad, national director of care advocacy for the Colorado-based Compassion & Choices. “All of us are going to experience the end of life if we haven't already with a loved one.“
Trad suggested that the low number of local hospices publicizing their stance on the state's end of life option act is due to understaffing and overworked employees.
”There's a real strain on hospices right now,” Trad said. “And so while we really would like hospices to comply with the law and have their aid in dying policy on their website, I'm not surprised that there are many that don't have it up yet.”
Trad added that Compassion & Choices has done outreach with hospices, sending packets and emails on medical aid in dying to help them in developing their policies.
So has the American Clinicians Academy on Medical Aid in Dying. The group offers hospices examples of End of Life Option Act language and describes what issues to consider when developing a policy and how to post it on their websites.
“It's for guys like me,” said physician Lonny Shavelson, chairman of the American Clinicians Academy on Medical Aid in Dying. “I’m a clinician. If I’m going to admit a patient to a hospice, I want to know what that hospice can do for my patient.”
Shavelson said he had expected 100% compliance among hospices by now because it’s been more than a year since the disclosure requirements became law. He said the law’s lack of enforcement might be partly to blame for the noncompliance.
“There is nothing that says that the cop is going to be at the door of your hospice and saying you're going to get this fine if you don't put this up,” Shavelson said. “I’m actually fine with that. I don't think it's our job at this moment to be police officers for hospices on this level.”
There might also be a financial motive for hospices to keep mum about the state's End of Life Option Act.
Robert Drake, the former director of clinical education and engagement at Compassion and Choices, said he has heard anecdotally that for-profit hospices oppose medical aid in dying because it affects their bottom line.
Robert Drake, the former director of clinical education and engagement at Compassion & Choices, said he has heard anecdotally that for-profit hospices oppose medical aid in dying because it affects their bottom line.
Patients participating in medical aid in dying translate into “lost days of hospice enrollment and consequent reimbursement,” he said.
“In my four years with Compassion & Choices, it was shocking to me the number of hospices who were ill-informed, uninformed or resistant,” Drake said.
UCSD Medical Professor Lynnette Cederquest said hospices could also be reluctant to publicize their views on medical aid in dying because of how they’re already perceived by the public.
“So many people are reticent to embrace this as part of their practice because they say, 'Oh, we're already looked at as the death service, that we're just killing people,'” Cederquest said. “So they're a little fearful that, 'Well, if we embrace this now, we're really going to be the death service.'”
Cederquest, who is also a medical ethicist, said operators might also believe that as long as they provide optimal hospice and palliative care, the terminally ill won’t need to access medical aid in dying.
”None of those things are true, and it becomes a little misguided if that's the basis of their decision to not participate in this,” she said.
Marie said it’s a travesty that most local hospices aren’t being upfront with prospective patients about their views on medical aid in dying.
“That's criminal because if you don't advise patients that this is available, they're not going to know,” she said. “Every person, healthy or not, should know that that's an option for them if and when they get to that point.”
Meanwhile, Marie spends her days painting flowers and scenes of faraway places. She sells her artwork to help cover her medical expenses. She has come close four times to taking the medication that would end her life because she is in such extreme pain. Her first choice is to go naturally.
“Now I'm in kind of a holding pattern,” she said. “But I think I'll just know in my heart when enough is enough.”
