FREEDOM IN FINALITY
As legislators consider update to aid-in-dying law, those navigating California system still battle with access, stigma
As legislators consider update to aid-in-dying law, those in the system battle with access, stigma.
La Jolla resident Faye Girsh has been advocating for right-to-die laws since the early 1980s, when she was working for the Southern California branch of the American Civil Liberties Union as a clinical and forensic psychologist.
At the time, the ACLU was representing Elizabeth Bouvia, a then-26year-old woman living with quadriplegia caused by cerebral palsy. She wanted to die and tried to refuse food and drink in the hospital; aid in dying was illegal at the time.
Bouvia lost her initial case, and a court order was issued allowing the hospital to forcibly feed her through a tube inserted into her nose and throat, according to the AMA Journal of Ethics, but she eventually won her appeal to reject feedings in 1986.
Bouvia ultimately decided not to end her life through starvation because it was too painful, combined with the side effects of her medications, according to a 1988 article from the Los Angeles Times. Even so, she became the face for the right-to-die movement in America. And the lessons Girsh
learned while working on Bouvia’s case remain with her to this day.
“I had never even given a moment’s thought to the whole issue of the right to die, but as we got further involved — and as we lost the case in the trial court — it became very interesting to me,” Girsh said.
Girsh went on to push for rightto-die and aid-in-dying laws as the founder of the Hemlock Society of San Diego, which provides education about the issue, and later as the national Hemlock Society president.
As part of her life’s mission supporting this form of end-of-life care, she advocated for the End of Life Option Act, a California law that took effect in 2016.
The law — which is similar to that of eight other states and the District of Columbia — allows doctors to prescribe death-inducing medications for patients of sound mind who are living with a terminal illness and have a prognosis of six months or less to live. The decision is made by the patient, and they can rescind their request at any time.
“The law does two things: It sets up a medical standard of care ... but at the same time it sets up safeguards against those who don’t qualify and to protect others from coercion or being forced into using the law,” said Peg Sandeen, executive director of the Death with Dignity National Center, in Portland, Ore.
Now, California’s legislature is considering an amendment to expand the state’s current aid-indying law.
Rethinking current law limitations
Introduced last month by state Sen. Susan Talamantes Eggman, (D-Stockton), Senate Bill 380, if it becomes law, would allow gravely ill patients with a prognosis of 15 days or less to live to skip the current 15-day waiting period between requests. Instead, a patient would need to make two oral requests, as well as one written request after two doctors determined the person would live 15 days or less.
It would also indefinitely extend the law, which is set to expire in January 2026, and require that health care providers who are unwilling to counsel patients on the aid-in-dying process refer patients to physicians who will.
Opponents, who often refer to the process as “doctor-assisted suicide,” argue that laws like these go against their personal or religious beliefs. Although they worry that the law will be abused by people trying to take advantage of the sick and vulnerable, a 2007 study of physician-assisted dying in Oregon and the Netherlands found no evidence to justify this.
Proponents, on the other hand, say aid-in-dying care is vital for patients who have painful, terminal illnesses and no other options in terms of life-saving treatments or medications. It gives them peace of mind as many of their other choices wane.
“As you are approaching the end of a terminal illness, and you get very unwell, your options peel away — your ability to enjoy life, to do your job, to drive your car, and to interact with your grandchildren — unfortunately these things peel away from you and you have fewer and fewer options,” Sandeen said. “What the ‘death with dignity’ bill does for people in the states that have it gives them one more option.”
In 2019, the California Department of Public Health reported that 618 people received prescriptions for aid-in-dying medication. That year, 378 people who ingested their prescriptions died, including 27 who received them in 2018.
Of those who died in 2019, 74.5 percent were ages 60 to 89, and 14.1 percent were 90 or older.
Cancer was by far the most common underlying terminal illness for those who ingested aid-in-dying medications, followed by neurological, cardiovascular and respiratory diseases, CDPH data show.
A call to improve access, reduce stigma
Although the law has been in place for nearly five years, there is still a large stigma connected to its use.
Almost everyone approached by The San Diego Union-Tribune turned down requests to share their stories about a loved one who used aid-in-dying medicines. Several feared they’d be scrutinized for helping their relative, while for others, their recent loss was too much to bear talking about.
El Cajon resident Kelly Davis, however, feels that sharing her family’s experience is a way to honor her sister’s memory.
Davis made national headlines in 2016 when she first wrote about the death of her 41-year-old sister, Betsy Davis, in the Voice of San Diego. The article was later shared in the Union-Tribune, where she contributes as a freelance reporter.
At the time of her death, Betsy had lived with a diagnosis of amyotrophic lateral sclerosis for three years.
Also known as Lou Gehrig’s disease, ALS is a terminal health condition with no cure or treatment to delay the progression of symptoms. Although in some cases patients outlive their initial survival timeline — like English theoretical physicist Stephen Hawking, who lived for decades after his diagnosis — most die within two to five years, according to the ALS Association.
It’s often quite painful without medical intervention, as one’s body loses function while the mind continues to function at or near full capacity. According to the Mayo Clinic, most ALS patients die of respiratory failure or suffocation.
Early on, Kelly said her sister was hopeful that there would be a treatment or clinical trial she could benefit from.
“But she also wanted to make the most of life, just in case she didn’t have a long time to live,” Kelly said during an interview last week.
Although she had moments where she was scared or upset, Betsy also tried to get the most out of the time she had left by traveling to Japan, moving to Ojai to be surrounded by nature, viewing art whenever possible and enjoying delicious meals, Kelly said.
Being as independent as she was, Betsy also didn’t want to suffer or to rely on others for help with all of her bodily functions, not knowing when the disease would inevitably take her life. Instead, she wanted the opportunity for a peaceful death where she could say goodbye to her loved ones.
She first started considering the route of end-of-life care about a year before California’s aid-indying law was passed and enacted. At the time, Kelly and their father worried what the legal repercussions might be for anyone involved with Betsy’s death, and they wondered if any method she tried would be successful.
Ultimately, Betsy waited until after the law took effect in 2016, when she threw a two-day celebration at her home in Ojai with friends and family. They celebrated her life over pizza and wine, shared stories and music, and honored a request to not cry in front of her. On the last day, she took her prescription at sunset and drifted off to sleep, dying four hours later.
“She had her re-birthday party with her friends, just to reframe the whole idea of death, that it should be a celebration, kind of moving on to another place, and that we should celebrate the fact that she was able to do this on her own terms,” Kelly said. “(Betsy didn’t want) one where we’re all kind of crowded around her hospital bed as she’s on a ventilator and unable to speak to any of us, and in pain.”
Filling out all the paperwork and getting the medication was difficult and caused anxiety during an already stressful time, Kelly recalled, and it was even more difficult finding a second doctor to approve Betsy’s request. Kelly said she welcomes any changes that make the process easier for patients who need to use the law, and that the use of it will become more normalized for those suffering from terminal illnesses.
“We like to think people die peacefully with a smile on their face surrounded by their loved ones, but that’s not always the truth — it could be a prolonged period of suffering,” Kelly said. “You want people to have a good death, and this helps them with that.”
For patients living with terminal illnesses and their families or caregivers looking for more information about using the state’s aid-in-dying law, The Elizabeth Hospice offers counseling and education, said president and CEO Sarah McSpadden.
The nonprofit organization assists everyone, regardless of whether they have the medical insurance or financial means to pay for hospice or palliative care.
Patients and their families can meet with counselors and social workers who walk them through the process, as well as other information for end-of-life care and pain reduction options. People can also meet with grief counselors, who can ease the anticipatory stress of the process.
“We talk with them about their physician, about their diagnosis, and do they have a primary care physician that is willing to be a physician that prescribes the meds for them,” McSpadden said. “If they don’t have that, we help them identify somebody in the county that would be willing to meet with them and go over the end of life option act, and what they can do to support them.”
To learn more about The Elizabeth Hospice and its support programs for patients living with terminal illnesses, family caregivers and free counseling for those living with sadness or depression, visit elizabethhospice.org. For more information about the Hemlock Society of San Diego and its upcoming educational events, visit hemlocksocietysandiego.org.
“She had her re-birthday party with her friends, just to reframe the whole idea of death, that it should be a celebration, kind of moving on to another place, and that we should celebrate the fact that she was able to do this on her own terms.” Kelly Davis, sister of Betsy Davis, who was one of the first people to make use of California’s aid-in-dying law