Medical aid in dying gaining more acceptance in Hawaii, report finds

A growing number of patients and physicians are participating in Hawaii’s medical-aid-in-dying program, but delays in the eligibility process continue to present challenges for terminally ill patients in their final days, according to the state Department of Health.

Seventy patients received prescriptions for lethal drugs in 2021 under the Our Care, Our Choice Act, compared with 37 in 2020 and 30 in 2019, according to the agency’s annual report on the medical-aid-in-dying law, which went into effect in 2019. Forty-nine of the 70 patients died during the reporting period, with 29 known to have ingested the prescribed medication.

The status of the 21 patients who obtained prescriptions in 2021 but aren’t included in number of deaths was unknown because follow-up forms were not filed with the department, DOH said.

Most of the patients who qualified cited some form of cancer as their primary underlying illness.

The DOH annual report released this month also noted a “complication” in a case involving a patient who experienced a prolonged time to death of approximately 12 hours after ingesting the medication.

The Our Care, Our Choice Act established eligibility criteria and safeguards “to ensure a secure, compassionate, and patient-centered end-of-life process” and to “address concerns about misuse,” according to the report.

Eligibility is limited to adult Hawaii residents who are mentally capable of making an informed decision and able to take the prescribed medication themselves. Patients also are required to make two separate oral requests for medical aid in dying to an attending physician not less than 20 days apart, and see a consulting physician and a counselor, such as a psychiatrist, psychologist or licensed clinical social worker.

Once deemed eligible by the three providers, the patient may submit a written request for the life-ending medication.

The 20-day waiting period between oral requests is the longest among the 10 states with similar laws, and Hawaii is the only state that requires a third health care provider to conduct a mental capacity evaluation, according to the DOH report.

In addition to regulatory hurdles, the department said patients face difficulty in finding participating health care providers, particularly on the neighbor islands, due to the state’s “growing severe physician shortage statewide especially due to the pandemic which exacerbated the shortage.”

On average, it took 41 days for patients to complete the eligibility process, from the first oral request to the receipt of a prescription, the report said. That’s an improvement over the average of 45 days in 2020 but longer than the 35-day average in 2019.

The annual report for 2021 also noted the average waiting period between the first and second oral request was 32 days, compared with 35 days in 2020 and 28 days in 2019.

Patients who received services from within “large, well-networked organizations” had the shortest waiting periods, according to the DOH report. Kaiser Permanente and Hawai‘i Pacific Health are two that provide “navigators” to help patients explore end-of-life options, including medical aid in dying.

Twenty-one attending physicians statewide wrote prescriptions to eligible patients in 2021, an increase from the 14 participating physicians in 2020 and 13 in 2019. Fourteen of the 21 attending physicians were on Oahu, three were on Hawaii island, one on Kauai and three on Maui, the DOH report said.

Thirty-six consulting providers participated, including 24 on Oahu, nine on Hawaii island, two on Kauai and one on Maui.

Sixteen counseling providers conducted mental capacity evaluations on eligible patients in 2021, according to the report. Nine of them were on Oahu, five were on Hawaii island and two were on Maui. There were no counseling providers on Kauai.

Aubrey Hawk, Hawaii spokesperson for Compassion & Choices, a national nonprofit dedicated to improving access to end-of-life options, said she was encouraged to see a 50% increase in the number of prescribing doctors, “even though the numbers remain relatively small.” However, she called the 41-day average wait for a prescription “way too long,” adding, “Even 20 days is way too long.”

In light of the delays and physician shortage, the DOH annual report advises patients considering medical aid in dying “to start early, talk with your physician, and ensure your attending physician documents the date of your first oral request in your medical record. If the initial attending physician opts-out from participating, patients can continue the process with another attending physician.”

The department also encourages patients to enroll in hospice or similar palliative care programs.

The latest DOH report on Our Care, Our Choice reiterates legislative recommendations from its 2019 and 2020 annual reports that called for a waiver of any waiting period if the attending and consulting providers agree the patient is likely to die before the end of the waiting period, and authorizing advance practice registered nurses to serve as attending providers for patients seeking medical aid in dying, given that access to participating health care providers is limited.

Bills that would have addressed those concerns did not survive the 2022 legislative session.

The 29 patients who died from ingesting the prescribed medication in 2021 ranged in age from 54 to 96. Five of them were age 90 or older, seven were in their 80s, seven were in their 70s, six in their 60s and four in their 50s.

Demographic data for one patient was incomplete, but in the other cases, 16 patients were male and 12 were female, the report said. Educational attainment ranged from high school to those with doctorate degrees.

Whites accounted for at least 15 of the patients who took the lethal drugs; Asians, six; Native Hawaiians, two; Pacific Islanders and Hispanic/Latinos, one each; and three identified as a combination of groups.

Hawk noted the growing diversity in patients seeking medical aid in dying. “Oftentimes to see a health care service available to such a widely diverse population so early on, you don’t necessarily see that,” she said. “It’s a really good sign that across the board, people are able to access this option.”

To help patients and providers understand the process required by law, DOH launched a new page on its website — health.hawaii.gov/opppd/ococ — where all required forms, instructions and frequently asked questions can be accessed.

Compassion & Choices also provides resources on its website, compassionandchoices.org.