Two years after Hawaii’s medical-aid-in-dying law went into effect, it’s still a challenge for many terminally ill patients to find physicians willing to help, according to health officials, and a significant number don’t survive the mandatory 20-day waiting period, the longest of any state with similar laws.
Thirty-seven patients received aid-in-dying prescriptions in Hawaii during the 2020 calendar year, seven more than in 2019, when the Our Care, Our Choice Act became law, according to the state Department of Health.
Twenty-five of those patients self-administered the prescribed lethal medication, while eight others who qualified for prescriptions died from other causes, according to the department’s latest annual report to the Legislature on OCOCA. The status of four other patients was unknown.
The report also notes that only 14 attending physicians statewide participated in such cases last year, including just one on Hawaii island, two on Maui and none on Kauai.
OCOCA safeguards and eligibility criteria mandate that patients seeking medical aid in dying be a Hawaii resident age 18 or older with a prognosis of six months or less to live. Patients must be mentally capable of making an informed decision and able to take the prescribed medication themselves.
Two separate verbal requests to an attending physician not less than 20 days apart are required, and patients also must see a consulting physician and a counseling provider, such as a psychiatrist, psychologist or licensed clinical social worker.
Once deemed eligible for medical aid in dying by the three providers, the patient may submit a written request for medication. Finally, a final attestation form must be completed 48 hours before the medication is ingested.
On average it took 45 days for patients to complete the eligibility process, from the first oral request to the date of prescription; for at least one patient, the process took more than five months, the report said.
Hawaii’s well-documented physician shortage, especially on the neighbor islands, is contributing to the difficulty patients face in finding doctors who will handle medical-aid-in-dying cases, officials said.
“Taking into account that, as well as the fact that there are providers that are opting out of participating in the Our Care, Our Choice Act, patients are finding it difficult to find a physician that is willing to do this process with them,” said Laura Arcibal, state telehealth and health care access coordinator at the Department of Health’s Office of Planning, Policy and Program Development, which prepared the annual report submitted to the Legislature in July.
“The ones that are finding it most difficult are those with private-practice providers, especially those that are on the neighbor islands, so they jump from one provider to another provider to another provider, and you’re talking about patients that are really, really sick already, they’re on their last leg and they’re having to find a physician.”
The DOH’s annual report recommends legislative changes to OCOCA authorizing advance practice registered nurses to serve as attending providers for patients seeking medical aid in dying, and waiving waiting periods if doctors agree the patient will die before the end of the waiting period.
“This was highly recommended during our 2019 report and it hasn’t changed; it’s still the same,” Arcibal said.
Bills that would have addressed access to providers and the lengthy waiting period did not survive the 2021 legislative session, despite support from organizations representing oncologists, nurses, social workers and mental health professionals.
The proposed changes to OCOCA would have allowed advanced practice registered nurses, in addition to physicians, to practice medical aid in dying, and let psychiatric mental health nurse practitioners and clinical nurse specialists, in addition to psychiatrists, psychologists and clinical social workers, provide counseling to qualified patients.
The measures also would have reduced the mandatory waiting period between oral requests from 20 days to 15 days, while providing waivers to patients not expected to live that long.
THE DOH report notes that patients in large-network health care organizations, notably Kaiser Permanente, had the shortest waiting periods compared to those with private-practice providers. Both Kaiser and Hawai‘i Pacific Health have OCOCA coordinators.
Jodi Shaw, who is board- certified in oncology and palliative care social work, is one of Kaiser’s two “navigators” who educate patients interested in medical aid in dying and walk them through the process, connecting them with the three required providers and helping with forms.
“But the really important part of our process is at the start, really sitting down with them and exploring why are they considering this option and also looking at all the different other options that are available to them like hospice or other support … ,” Shaw said.
“The coordinator will set this up so the patients don’t have to be trying to coordinate this themselves on top of everything else they’re worrying about. It’s such a touchy, hard subject but we want to support patient choice.”
Dr. Charles Miller, former chief of oncology for Kaiser Permanente, was asked by his former employer to come out of retirement in 2018 when the OCOCA was passed by the Legislature and signed into law by Gov. David Ige.
Miller said that as an oncologist, “taking care of dying patients has been my focus for 40 years.” He said more primary care physicians and specialists outside of oncology aren’t participating in medical aid in dying because they “just haven’t taken the time or effort to become familiar with the law and the various requirements.”
“Unless you’re in a big system like Kaiser or HPH, it is a challenge. It’s a lot of paperwork and time, and I’m sure they have a lot of other things to do. And it’s just not a big part of their practice and they haven’t made an effort to educate themselves,” he said.
“A bigger, much sadder issue is that in the 2-1/2 years I’ve been doing this, fully one-third of my patients at Kaiser don’t make the 20-day waiting period. They request the medication and they want to do it, and they die before they are eligible.”
In his legislative testimony supporting the OCOCA amendments, Miller said information provided by Kaiser and HPH indicated that at least 21 eligible patients had died before they could get their medication. And of the 10 referrals he received in January, four of the patients died of underlying medical conditions before the 20-day waiting period.
PARTICIPATION in OCOCA is voluntary for patients and health care providers.
Ramona Chiya, 77, who has stage 4 lung cancer, discussed medical aid in dying with her oncologist after being told in September she had only about seven months to live.
She ultimately decided it wasn’t for her.
“My thought was I didn’t want to suffer. I didn’t want to be an invalid. I didn’t want not to able to take care of myself,” said Chiya, a former textile designer who lives in Waikiki with her daughter. But when she learned that nausea was a possible side effect of the lethal mix of drugs prescribed to patients, Chiya had a change of heart.
She said she’s lived with nausea for years and suffered severe side effects from chemotherapy.
“This is what I’m dealing with every single day. I just don’t like it … ,” Chiya said. “So I’m thinking if I’m going to feel nauseous, I don’t want it.”
Miller said anti-nausea drugs are prescribed to patients before they ingest the life-ending medication and none of the patients he’s assisted have complained of nausea.
Most individuals who seek aid in dying are under hospice care and are at home or at a relative’s home when they take the medication, according to Miller, who said he has attended six or seven deaths at patients’ request.
“It’s very peaceful. The family is there, the people there are who the patient wants to be there. That’s what medical aid in dying for me is about. It allows the patient to decide where, when, how and with whom they die,” he said.
“They drink their medicine and the family is there, holding hands, and the patient gradually falls asleep within 15 minutes.”
The median time from ingestion to death is two hours, he said.
Chiya, who stopped traditional cancer treatments in favor of alternative therapies, has outlived her prognosis but said her health has been declining in recent weeks and she’s been looking into palliative and hospice care for when the time comes.
In the meantime, she is still able to drive herself to appointments, keeps busy as the site manager for her condo building, and is active at the Nichiren Mission in Nuuanu, where she helps clean once a week and just started weekly taiko lessons.
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Our Care, Our Choice Act
Hawaii’s medical-aid-in-dying law went into effect Jan. 1, 2019. The following data was reported from Jan. 1 to Dec. 31, 2020.
37 — Patients who obtained aid-in- dying prescriptions
25 — Patients who self-adminis- tered medication
14 — Number of participating attending physicians statewide
45 — Average number of days from first request to date of prescription
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Patients who self-administered an aid-in-dying prescription
Ages
50-59: 1
60-69: 5
70-79: 11
80-89: 7
90-99: 1
Gender
Male: 17
Female: 8
Race
White: 19
Asian: 5
Pacific Islander: 1
Underlying illness
Cancer: 19
Pulmonary disease: 3
Heart failure: 2
Parkinson’s: 1
Source: Department of Health Office of Planning, Policy, and Program Development
