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At least a half-dozen Hawaii residents died in 2019 while waiting to qualify for the state’s fledgling medical aid-in-dying program, which grants terminally ill patients the legal right to swallow a lethal medication that ends their life as they sleep.
Hawaii’s year-old medical aid-in-dying law includes some of the strictest qualifying rules in the nation, including a 20-day minimum waiting period between the time a patient first requests the drug from their doctor to the time a doctor gains the legal authority to write that prescription.
Several other states require a minimum waiting period as long as 15 days, but Hawaii’s is substantially longer.
In fact, due to lags in the system, the 27 patients who died under the law in 2019 endured an average waiting period of 34 days. One patient waited 100 days.
Dr. Charles Miller, director of the aid-in-dying program at Kaiser, said six of his patients died while waiting.
“Remember when a physician says to you, ‘You’ve got six months left to live,’ that’s more art than science,” Miller said. “I’ve seen these patients walk into their bedroom and it’s very clear they’re not going to last 20 days.”
The waiting period is a safeguard intended to ensure that a patient is clear about their decision to die by a means other than natural causes.
But in a new report to the Legislature, the Hawaii Department of Health is asking lawmakers to grant doctors the power to eliminate the mandatory wait if they determine that their patient might not live so long.
Last year the Oregon legislature did something similar when it approved an amendment allowing doctors to waive the state’s 15-day waiting period if they believe their patient might not survive it.
Apart from the possibility that a patient might die during the waiting period, some Hawaii doctors are concerned that a patient’s illness might progress to the point that they’re no longer able to swallow the medication by the time they get it.
A patient might also lose their mental acuity during the waiting period, and be unable to qualify.
Another concern: The waiting period might derail the entire process for aid-in-dying candidates whose doctor takes leave for vacation or personal reasons. This is especially problematic for residents of neighbor islands, where there are a small number of physicians participating in the program, if any at all.
Of the dozen doctors who wrote aid-in-dying prescriptions in Hawaii in 2019, only one of them was on a neighbor island — Kauai — according to data collected and analyzed by the state health department.
There are no doctors on Maui willing to prescribe the aid-in-dying drug.
That’s because the controversial law establishes legal protections for medical providers who wish to prescribe the aid-in-dying drug in good faith and for those who wish to opt out.
To that end, state health regulators are asking the Legislature to consider an amendment to the law that would expand the authority to prescribe aid-in-dying medication to advanced practice registered nurses.
Some medical professionals are criticizing the mandatory mental health competency exam as overkill. Hawaii is the only state that requires qualifying patients to pass such an exam.
Dr. Brian Goodyear, a semi-retired psychologist on Oahu, said he has completed two dozen mental competency exams and finds them to be largely unnecessary.
“I haven’t come across anyone who’s been freaking out because of their diagnosis,” Goodyear said. “I haven’t come across anybody who is falling apart emotionally because of the situation they’re in. They’ve all been very, very accepting of the situation they’re in and I think they’ve all made a very clear and rational decision to take this option.”
One patient did not pass the exam. Goodyear said the patient had already been flagged by their physician as being potentially unfit to participate in the program.
Goodyear would like to see lawmakers drop the exam as a requirement. Instead, he suggested that doctors should have the option to order the exam as an extra precaution for some patients if they have concerns about the patient’s mental state.
“It would be one less hoop that patients have to jump through,” Goodyear said.
The exams Goodyear conducted mostly took the form of in-home visits, which he said can be laborious. In one instance, he traveled from Honolulu to see a patient in Hilo.
“I have the time to go out to people’s homes but I can see that could well be a barrier for some providers with an office space practice,” Goodyear said.
Among the first Hawaii residents to die under the state’s new assisted suicide law was 83-year-old Jeanne Elder.
Elder, who worked as a plant designer until she was 80, increasingly suffered from symptoms associated with a cancer diagnosis she received in 2016. Although she stopped working, altered her diet and endured a regimen of clinical trials and surgeries, Elder was unable to walk by early 2019, according to her daughter, Kim McAden.
McAden said her mother’s interest in the state’s aid-in-dying program arose as she came to acknowledge that she could no longer live an independent, pain-free life. In short, the cancer had won.
“My mother was emphatic and frustrated with delays and resistance to help her. I remember what she said: ‘This needs to happen. I’m a resident of Hawaii. It’s my decision and it’s the law. They have to let me do this.’”
The first hurdle was her primary care physician, who did not want to facilitate Elder’s aid-in-dying request and had no suggestions for an alternative provider. Her oncologist was initially hesitant, but eventually agreed to help Elder access the law.
But there were other roadblocks. It took numerous phone calls to mental health professionals and social workers to find a psychologist willing to conduct the mandatory mental fitness exam. Eventually Elder was able to receive an in-home psychological evaluation, which allowed her to qualify to receive the medication.
But by this point, Elder was living in a hospice facility that would not allow aid-in-dying medication to be ingested on the premises. Elder had to hire a new nurse and be medically transported back to her home, where she was finally allowed to ingest the medication and die in the company of her family.
McAden said her mother fell asleep within about 10 minutes of ingesting the medication. Within another 30 minutes, she was gone.
“I’m grateful that we were able to pull the pieces together before her greatest fear was realized: To be trapped in bed and to lose her cognitive ability,” McAden said.
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