On Sunday, May 5, Steve Johnson shaved, showered and donned his finest aloha shirt. Then he drank a lethal cocktail prescribed by his doctor and prepared by his wife.
Within minutes the 75-year-old terminal cancer patient slipped into eternal sleep in his Kona home. His death was the second in Hawaii under the state’s new assisted suicide law, following the April death of a 73-year-old man who suffered from amyotrophic lateral sclerosis.
“It’s a tragedy,” said Kathy Johnson, Steve Johnson’s wife of 44 years. “But for a little bit of the tragedy Steve got to write his own script.”
A retired battalion fire chief, Johnson was 74 when his cancer, dormant for a decade, resurfaced in his lungs, bones, lymph nodes and prostate. After two days of biopsies and body scans in Honolulu, a doctor told him this past November that he had about six months left to live.
Facing death, Steve Johnson told his doctor he did not want to fight a prognosis that seemed inevitable. He didn’t want to be hooked up to machines. He didn’t want a feeding tube. He wanted life or death — not the painful in-between.
So in January, Steve Johnson opted to exert a degree of control over his looming end of life by becoming one of the first Hawaii residents to employ the state’s new medical aid in dying law.
The law establishes a terminally ill patient’s right to request from their doctor a prescription drug that will cause them to die in their sleep.
With legal protections in place for medical providers who wish to opt out, Hawaii’s controversial “Our Care, Our Choice Act” kicked into effect on New Year’s Day, making Hawaii the seventh state to legalize assisted suicide.
Hawaii’s law includes some of the strictest qualifying rules in the nation. It is the only state that requires patients to undergo a mental competency exam. And while other states require a two-week minimum waiting period between the time a patient requests the drug from his doctor and the time at which the doctor gains the legal authority to write the prescription, Hawaii’s law mandates a minimum waiting period of three weeks.
These and other safeguards are intended to ensure that a patient is clear about their decision to die by a means other than natural causes. But some medical professionals have criticized the measures as overkill.
Dr. Charles Miller, a medical aid in dying advocate on Oahu, said his employer Kaiser Permanente Hawaii has documented three patients who did not survive the mandatory waiting period, dying of their disease before they could qualify to participate in the program.
“It’s a bummer,” Miller said. “I see people in really bad shape in their homes (seeking) this prescription and you know they aren’t going to make it.”
The state does not track how many patients have requested participation in the state’s fledgling medical aid in dying program. But at Kaiser, Miller said there have already been 19 requests from patients.
A new report by Hawaii health regulators finds that medical providers have written a total of eight prescriptions to medical aid in dying participants in the first six months of the law’s enactment.
In addition to the two men who died after ingesting the drug, one person in possession of the drug died naturally of lung cancer. The other five patients are alive and have not yet ingested the medication.
Miller said that just having the medication in their possession has given some of these terminally ill patients a boost in mood and energy, presumably because it provides them with some relief to know that they can choose to ingest the drug if the dying process becomes intolerable.
The biggest problem with the program’s rollout so far is that many doctors either refuse to participate in it or have not yet participated because they are unclear about how it works, according to Miller, who came out of retirement to help Kaiser build its medical aid in dying team.
“It’s some ambivalence and some of it is that it’s so new that the doctors don’t know enough about it,” Miller said.
In some cases, entire hospitals and hospice groups have banned their medical staff from participating in the program.
There are other barriers to access.
Only three pharmacies — two on Oahu and one on Kauai — are certified and willing to fill prescriptions for the lethal drug, which is a compound medication. That’s an improvement from when there were no participating pharmacies in Hawaii at the time when the law was first enacted. Miller said the temporary absence of a pharmacy to prepare the drug delayed some patients’ receipt of the medication by multiple weeks.
Another issue: stipulations in the law that protect institutions and medical providers who oppose the program from participating in it also seem to prevent some patients from learning about medical aid in dying as an end-of-life option.
“We’ve had people message us on Facebook saying their physician refused to support their request.” — Samantha Trad, Compassion & Choices
For example, medical providers are not required to alert patients about the program nor must they facilitate a patient’s request to participate. This means that the law greatly depends on a motivated patient becoming aware of the program and utilizing their right to request participation in it — and then finding a doctor willing to prescribe the drug.
Lorrin Kim, chief of the state Health Department’s Office of Planning, Policy and Program Development, said most of the qualified patients who have sought participation in the program have been “lucky enough” to have Kaiser insurance.
“Kaiser has set up a formal workflow supported by five or six staff who already provide cancer navigation services,” Kim explained in an email. “If you’re outside of Kaiser, things may not be as seamless.”
Samantha Trad, director of the advocacy group Compassion & Choices Hawaii, said she encourages patients finding difficulty in accessing the law to contact her organization.
“We’ve had people message us on Facebook saying their physician refused to support their request, or what is maybe even more heartbreaking, is some medical centers and hospice organizations will not allow their staff to participate even when the doctor wants to,” she said.
Experts say the program’s success requires advanced coordination from doctors, nurses, psychologists, pharmacists and coroners — some of whom have petitioned against the passage of the law that established the program.
Despite these hurdles, Trad said Hawaii is far ahead in its implementation of the law compared to other states that have enacted assisted suicide legislation. No one in Washington, D.C., was able to access the jurisdiction’s assisted suicide law in the first year it was implemented.
In addition to its work advocating for fair access to the law for qualifying Hawaii patients, Compassion & Choices aims to encourage end-of-life planning between patients and their families and doctors, Trad said.
“A lot of people still don’t know what hospice is or palliative care — or how to even say that word,” Trad said. “And we do live in a culture where it can be very difficult to talk about death or even accept that it’s going to happen. Maybe (medical aid in dying) is changing conversations and improving access to all options for end-of-life, not just for the patient who chooses to have this option.”
For Steve Johnson, the hurdles he experienced in obtaining the drug that would kill him included a 15-day pause between the date the law kicked into effect and the date on which his doctors at Kaiser were ready to accept requests from patients who wanted to participate.
“He was still Steve until he died, which is something he wanted for all of us.” — Kathy Johnson
Even after he had completed every item on the checklist to qualify for the program, Steve Johnson’s widow Kathy Johnson said her husband had to wait an additional two weeks for his doctor to write him the prescription because there wasn’t yet a pharmacy in Hawaii that could prepare the medication.
All told, it took Steve Johnson almost six weeks to fill his prescription from the day he first requested the drug from his doctor, Kathy Johnson said.
During this time, Kathy Johnson said her husband felt stressed and anxious that he might suffer a stroke or some other complication that could rob his mental capacity, rendering him unable to make the decision to ingest the medication. He understood it was a decision that his wife could not make for him if he were to lose his soundness of mind.
But when he finally got the drug into his home medicine cabinet, Kathy Johnson said her husband felt a palpable sense of ease.
“That was like giving Steve a Christmas present because he was just so relieved that he finally had control of his destiny, rather than what we’d seen happen with many cancer patients … hooked up to all these machines with a lot of suffering and pain,” she explained. “Steve didn’t want that — not for him, not for me, not for our family.”
Steve Johnson did not take the drug immediately.
But when he got to a point where he was vomiting regularly and could not sleep nor discern between reality and his waking dreams, he decided it was time.
“We did have a few friends who tried to talk him out of it or tried to do religious trips on him, and he got tired of that,” Kathy Johnson said. “It wasn’t up to him to convince them that he was making the right decision. It’s surprising how many people felt like it was up to them to convince him to not make that decision and just let nature take its course, when that’s not what he was going to do.”
On May 4, Kathy Johnson called her husband’s hospice nurse to alert him that the decision had been made: Steve Johnson would ingest the medication the following day.
The nurse arrived at the Johnson’s home the next morning and stayed there until Steve Johnson’s body had been taken away for cremation.
“The relief he had was that he could just drink the Kool-Aid, lay down and take a nap,” Kathy Johnson said. “He didn’t waste away, he didn’t lose any cognitive function. He was still Steve until he died, which is something he wanted for all of us.”
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