‘You can live really well, even when you’re dying’; Big Isle doctor says having an aid-in-dying option improves end-of-life care

  • CHARFEN

Charlotte Charfen, a board certified emergency medicine physician who has worked in emergency rooms for 20 years, is passionate about wellness — in life and death.

“In general, we tend to not do end-of-life care very well … ,” she said.

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It’s a taboo subject that many don’t find comfortable discussing, but for Charfen, having open communication about the topic can relieve much fear and suffering.

She helped found the North Hawaii-based nonprofit organization Life and Death Wellness, which provides education, support and awareness for living well, regardless of what stage of life a person is in.

“(We) do life and death in the emergency department, so what I recognized a long time ago (is that) you can live really well, even when you’re dying, and a lot of people don’t realize that.”

Last year, Charfen, who works at Kohala Hospital and Kona Community Hospital, was the only physician outside Oahu who wrote an aid-in-dying prescription after the Our Care, Our Choice Act went into effect in January 2019.

The law allows Hawaii residents 18 years old or older who are diagnosed with a terminal illness and have a prognosis of six months or less to live to obtain an aid-in-dying prescription after two separate verbal requests to a physician, a written request with two witnesses and a mental health evaluation to ensure they are capable of making medical decisions for themselves.

When the legislation went into effect, Charfen said people who didn’t necessarily qualify under the law but were curious about it, would reach out. They would get some relief just talking, she said.

Her first real patient contacted her about a year ago.

According to Charfen, the cancer patient asked his primary care doctor and specialists, but no one would talk to him about the law.

The man, she said, felt abandoned.

After receiving his message, Charfen said, “I remember sitting down in my living room and crying. One, it was heartbreaking to hear a man tell me he felt abandoned by doctors (who were) supposed to care for him.”

She knew instantly she had to help.

Charfen said the man “put a lot of energy and time into thinking about the whole process.”

She thought the experience would be a “big deal,” and wondered how she would feel when she had to actually write the prescription at the end of the weeks-long process.

“I didn’t have any apprehension by the time we done that work,” she said. “… You cannot take a patient through this process … and not know that a person has made a very thoughtful, conscious, confident decision.”

This patient, she said, is still alive and has outlived his prognosis. He has not taken the medication, but having it “just gave him a freedom almost.”

Charfen said she recently wrote a second prescription for a different patient, but that process was done via telemedicine because of the COVID-19 pandemic.

“I was able to do everything via telemedicine, and that to me is a really great opportunity for us to get patients more access.”

There is still a lack of access to the law, especially on the outer islands, Charfen said.

Thirty qualified patients in Hawaii received aid-in-dying prescriptions in 2019, the first year the Our Care, Our Choice Act was implemented, according to a July 1 report to the state Legislature from the state Department of Health.

According to the report, 23 of the 30 patients who received a prescription died, 15 of whom died after taking the aid-in-dying medication.

Nearly all of those who died after self-administering their prescriptions were between the ages of 64 and 85, and most had a cancer diagnosis. One patient had amyotrophic lateral sclerosis, one had end-stage chronic obstructive pulmonary disease and two had Parkinson’s disease.

A 57-year-old man with metastatic pancreatic cancer was the youngest.

The report did not identify where in Hawaii these patients lived.

A total of 13 providers wrote prescriptions in 2019 — 12 on Oahu and one on the Big Island.

As of June 26, 24 patients had received aid-in-dying prescriptions in 2020, an increase compared to the same time frame last year, and 13 patients had ingested the medication, according to the report.

Charfen said having an aid-in-dying option improves end-of-life care across the board and not only for patients who access the law. It opens up conversations between doctors and patients — and patients and families.

Sam Trad, state director for Compassion and Choices, part of a national organization that advocates for end-of-life rights, said she was surprised at how many people were able to access the law during the first year.

“I think it’s because the Hawaii Department of Health has really done a great job of educating and outreach and working to implement the law,” she said.

According to Trad, Hawaii has the most restrictive aid-in-dying law compared to similar laws in California, Colorado, Maine, Montana, New Jersey, Oregon, Vermont and Washington state, along with Washington, D.C.

“It shouldn’t be difficult for a patient to access (the law),” she she said. “Our goal is to make sure no patient has to find a new doctor, health care system or hospice to have this end-of-life-option if they want it.”

Trad said it’s important for interested patients to talk to their doctors as soon as possible.

“Some doctors haven’t thought about if they would support their patient in medical aid in dying,” she said.

Proposed amendments to the law were being considered by the state Legislature prior to its closure because of the COVID-19 pandemic in March.

Senate Bill 2582 and House Bill 2451 both call for 15 day waiting periods between oral requests, instead of 20, and allow advanced practice registered nurses who can prescribe medication be an “attending provider.”

The Senate bill, which crossed over to the House in March, also would allow providers to waive the waiting period if a patient would likely die before the 15 days lapsed.

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The Legislature reconvened last month, but Trad said it’s unlikely the bills will pass this legislative session.

Email Stephanie Salmons at ssalmons@hawaiitribune-herald.com.

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