Saturday, Sept. 24, 2022 |
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Their deaths were different.
Some were faster than others.
Some died, as they wanted, surrounded by family and friends and celebrating the lives they lived.
Some died in ways they didn’t want, their bodies ravaged by disease and unable to choose their end-of-life as they had hoped.
Enacted in 2019, the Our Care, Our Choice Act allows Hawaii residents 18 and 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.
But experiences accessing the law can vary from patient to patient, especially on Hawaii Island where it can be difficult to find medical providers to assist in the process.
Dr. Charlotte Charfen — an emergency room physician and private practitioner in North Kohala who has been practicing for 20 years, and is and co-founder of the Kapaau-based nonprofit Life and Death Wellness — was one of two health care providers on the Big Island who wrote aid-in-dying prescriptions under the law in 2020.
“At this point, I’ve now helped six people, written six prescriptions since the law was enacted, and each one came to me because they didn’t have a physician to be able to help them.”
Her experiences helping patients access aid-in-dying vary.
Charfen first met one aid-in-dying patient, who received a terminal diagnosis after being admitted to the hospital, while working in the emergency department, and was first able to educate the man about the law.
Several months after that initial meeting, she received a phone call that he was ready to go through the process.
“He was able to access the law easily,” Charfen said.
The same can’t be said for a West Hawaii man, whom she has dubbed “The Captain.”
According to Charfen, the man was told by his doctors that physicians within the Hawaii Health Systems Corp. were not allowed to help him die.
The man’s cancer was progressive, and Charfen said by the time they connected, she was scared he wouldn’t make it through the mandatory 20-day waiting period.
The Captain was able to make the second oral request, but died before he could receive the aid-in-dying medication.
“The day I was able to legally write his prescription was the day he died,” Charfen said.
Charfen also connected with Gary Williams, a Keaau man whose physician originally said they would help but later declined. The doctor instead told the man that if he wanted to die, he needed to go home and die naturally or “drink a bottle of Benadryl.”
“Gary left pretty angry, pretty confused,” she said.
With Charfen’s help, though, Gary was eventually able to get the prescription and chose his day, dying surrounded by family.
Proposed changes to the law currently before the House and the Senate aim to make the law more accessible for those who seek to use it.
Senate Bill 839 and House Bill 487 both would permit advanced practice register nurses, or APRNs, to be attending or consulting providers and add psychiatric mental health nurse practitioners to those who can provide counseling consultations.
The measures also would reduce the minimum waiting period between oral requests from 20 days to 15, and would permit the attending provider to waive the waiting period if they believe the patient will die before the 15 days lapse.
Sam Trad, state director for Compassion and Choices, part of a national organization that advocates for end-of-life rights, said the proposed changes started at the end of 2019 when the DOH held a summit with medical providers to get their input on how the law was working.
It became clear that providers “thought the law was beautiful and wonderful for those who could access it,” she said.
But not everyone could.
“It’s very difficult, especially on the neighbor islands, to access the law and can be very difficult to find a provider, especially with the growing shortage of physicians,” Trad said.
Additionally, Trad said many of the doctors had patients who met the requirements and wanted medical aid-in-dying, but died during the mandatory waiting period, in ways they hoped to avoid.
An identical bill last year had passed out of the state Senate and was before the House when the COVID-19 pandemic hit and the legislation was shelved, she explained.
“We have even more evidence that these amendments are needed so the law can be (used) as intended. … It’s not just for privileged people in Honolulu. It’s for every dying resident of Hawaii who wants this compassionate end-of-life option.”
The proposed changes are in line with recommendations from the state Department of Health.
DOH spokeswoman Janice Okubo said the department’s recommendations remain the same as in the 2019 annual legislative report: waive any waiting periods if the attending and consulting providers agree the patient likely will die before the waiting period ends; and authorize APRNs to serve as aid-in-dying providers.
According to Okubo, 67 people statewide qualified for the law in the first two years — 30 in 2019 and 37 in 2020.
Of those, 41 ingested the prescribed medication.
Okubo said that four patients in 2020 were on the Big Island, two of whom took medication.
In addition to the two attending providers, Hawaii Island also had three consulting providers and three mental health providers participate last year.
“Access remains limited on the neighbor islands, particularly on Kauai where there are no participating attending providers,” Okubo said.
The Senate Health Committee recommended 4-1 that SB 839 be passed with amendments. Oahu Republican Sen. Kurt Fevella cast the lone “no” vote.
The bill also has been referred to the Senate’s Judiciary Committee.
While most written testimony submitted prior to the committee meeting was in support of the measure, a number of testifiers opposed the bill.
“With barely two years experience with the Our Care, Our Choice Act, this bill would take Hawaii from what was touted as the safest physician-assisted suicide legislation in the nation to one most willing to sacrifice safety in the interests of streamlining the process,” Oahu physician Daniel Fischberg wrote.
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