Hawai‘i State Data on Our Care, Our Choice Act Show Broadening Participation; More Education Needed

End-of-life options advocate applauds Dept. of Health recommendations to improve access to the law

Jul 1, 2020 Hawaii our care our choice act

The Department of Health today released its annual report detailing usage information during the first full year of the Our Care, Our Choice Act (OCOCA) in effect (Jan. 1 - Dec. 31, 2019), as well as preliminary data from the first half of 2020. The law gives mentally capable, terminally ill adults with six months or less to live the option of medication they can decide to take to die peacefully in their sleep. However, this law can be difficult to access, especially on neighbor islands.

The state’s data show that in 2019, 30 patients formally qualified for medical aid in dying and 15 of those patients peacefully ended their suffering by using the medication. Thirteen unique physicians supported their patients in this compassionate end-of-life option (i.e., acted as the attending physician and prescribed the medication); all but one was on Oahu. The average waiting period between the first and second oral request was 28 days; patients receiving care from within large, well-networked organizations had the shortest waiting periods compared to private practicing providers.

Preliminary data from Jan. 1 – Jun. 26, 2020 indicate participation continues to grow. In the first six months of 2020, 24 qualified patients received medical aid-in-dying prescriptions. Thirteen patients ingested the medication. Five new attending providers participated. The average waiting period between the first and second oral request was 39 days.

The report includes a recommendation to the legislature to amend the OCOCA law by allowing Advanced Practice Registered Nurses (APRNs) to act as the attending provider, and allowing the attending provider the ability to waive the waiting period if the patient is unlikely to survive it.

“We are encouraged to see that the OCOCA is working and that terminally ill residents have been able to access this compassionate end-of-life option, and we fully support DOH recommendations to improve access to the law,” said Compassion & Choices Hawai‘i State Director Samantha Trad. Citing the lengthy average waiting periods in the report, Trad said, “We also recommend reducing the waiting period for all eligible patients from 20 days to 15, which would bring Hawaii’s law in line with other authorized states.”

The DOH report is designed to track patients who successfully complete the medical aid-in-dying process, not those who are in process, or who qualify but do not live through the waiting period. The mandatory waiting period is a problem for some patients, according to Kaiser Hawai‘i physician Dr. Charles Miller. “We have had nine terminally ill patients over the last 18 months who would have otherwise qualified for medical aid in dying, but who died in exactly the way they did not want during the mandatory waiting period--unable to access the compassionate option of medical aid in dying.”

Dr. Charlotte Charfen, a Big Island ER physician and the first Hawai‘i doctor outside of Oahu to prescribe under the OCOCA, has seen that rural patients do not have meaningful access to the law. “One of the main reasons is the extreme shortage of physicians on the neighbor islands. I know and work with APRNs who would be willing to help make the law more accessible for our terminally ill, suffering patients. They are already in place in the most rural areas of our state, caring for patients who would otherwise have no access to a health care provider.”

Access will also improve with more provider awareness, according to Laura Arcibal, State Telehealth and Health Care Access Coordinator. “More education and networking amongst private practicing providers may be beneficial to reduce the number of days beyond the minimum waiting period and efficiently coordinate patient referrals to counseling and consulting providers,” she said. “The law requires two reports from the attending (prescribing) physician; one report includes the mental health counseling and consulting provider forms, which are accessible on the Department of Health’s website.”

Due to a federal funding restriction made by Congress in 1996, no federal funds can contribute to medical aid in dying. This means that VA benefits and Medicare cannot cover the cost of medical aid in dying. However, eligible patients may use private insurance that provides coverage or pay out of pocket. Med-QUEST also covers medical aid in dying for qualified patients.

Hawai‘i is one of 10 jurisdictions where medical aid in dying is authorized. Other states that have authorized medical aid in dying are California, Colorado, Maine, Montana, New Jersey, Oregon, Vermont and Washington, along with the District of Columbia, together representing more than 20 percent of the nation’s population.

Compassion & Choices provides education to the public and medical professionals through its Access Campaign to ensure that every eligible terminally ill person in Hawai‘i has access to all end-of-life care options, including hospice, pain control, palliative care and medical aid in dying. Educational resources for patients and providers can be found at compassionandchoices.org/hawaii; to request a community or medical provider presentation call 808-664-5794 or email [email protected].