The cancer was so painful, George Coleman couldn’t stand up straight, the tumors forcing the rural Maui resident into a squat even on the short elevator ride to the doctor’s office.

Coleman was in hospice when he seriously began to consider medically assisted death. He had been given six months to live after doctors found the cancer had spread from his appendix through his abdomen last summer. Four months later, the 68-year-old limousine driver wanted to die on his own terms, out of the hospital under a blazing blue sky.

At Coleman’s insistence and after much prayer, his sister started calling a long list of doctors on Maui who would hopefully grant Coleman’s request.

“The surgeon wouldn’t do it, the oncologist wouldn’t do it – but his cancer was so painful,” said Cindy Coleman-Jakubczak. “I remember just being in tears, talking to myself with my hands in the air, asking ‘Why, why won’t anybody help us?’”

More than three years after physician-assisted death was legalized in Hawaii, advocates and health care workers say redundancies in the 2018 law and doctor shortages are preventing terminally ill patients, particularly those in underserved communities, from utilizing the option.

Under that law, medically assisted death does not constitute “suicide, assisted suicide” or “any other criminal conduct” and will not affect a person’s life insurance or estate.

House Bill 1823, which has passed out of its committees and will enter its final reading in the Senate before returning to the House for approval, would ease access to the practice by shortening mandatory waiting periods and expanding authority to prescribe the life-ending drug to qualified advanced-practice registered nurses and physician assistants.

But opponents worry the loosening of requirements will allow patients and doctors to make hasty decisions while empowering health care workers who may not have the expertise to recognize signs of mental illness that would otherwise disqualify a patient from medically assisted death.

Few And Far Between

Compassion & Choices, a group that advocates for end-of-life options, outlines a 17-step process patients need to follow to access medically assisted death under Hawaii law.

Terminally ill adults begin the process of accessing physician-assisted death by making the first of two oral requests to a physician willing to prescribe the life-ending drug, and a second physician must corroborate that the patient has less than six months to live, is of sound mind and is not being pressured into ending their life.

Hawaii is the sole jurisdiction out of 10 states plus the District of Columbia to then dictate patients see a mental health provider who must assess that the patient does not suffer untreated depression or other illnesses that may compound the person’s ability to make informed decisions.

This makes a total of three health care providers patients must find to sign off on a physician-assisted death, none of which are required by law to participate. Advocates and health care workers say it is often hardest to find that first attending doctor to oversee the entire regulatory process and write the prescription.

“There is definitely a lack of physicians comfortable with being the prescribing physician,” said Michelle Cantillo, a registered nurse who helps coordinate the Medical Aid in Dying program at Hawaii Pacific Health. “Actually writing the prescription and going through the process is a little bit harder for some.”

A total of 22 Hawaii doctors wrote 67 prescriptions the first two years of Hawaii’s physician-assisted suicide program, according to the Hawaii Department of Health’s latest annual report.

Only “a couple” of new physicians issued prescriptions in 2021, DOH Office of Health Status Monitoring chief Lorrin Kim confirmed in an email.

Access to participating doctors remains a challenge, particularly for patients outside of Oahu. In 2019, all but one attending physician practiced on Oahu; in 2020, only three were based on the neighbor islands — two on Maui and one on the Big Island.

Telehealth has helped doctors reach dying patients in rural areas, but a simple dearth of doctors during the pandemic mean some patients must still wait months to receive their medication.

“A lot of doctors, they are not educated and they really have resisted being educated about the law partly because they’re too damn busy,” said Dr. Charles Miller, an oncologist who heads Kaiser Permanente Hawaii’s Medical Aid in Dying program. “They’re just overwhelmed, just staying on top of things.”

Those in major health systems such as Kaiser and HPH have seen shorter waiting periods to receive the prescription, but not all health systems offer the same level of services. Adventist Health Castle writes online that it does not allow its employees to “participate in activities under any death with dignity law” due to its association with the Seventh-day Adventist Church.

Patients have trouble finding participating doctors even at The Queen’s Health System because the network lacks a centralized program to coordinate the physician-assisted death process, according to Miller and advocates.

“From my personal experience, Queen’s is awful,” Miller said. “Queen’s Health System is a major player in health care throughout the state and they should be doing better.”

Whitney Limm, chief physician executive of Queen’s, said in a statement the health system has a committee of medical experts to provide staff with resources to navigate a request for medically assisted death.

“Queens has taken the approach of training all staff … to competently and compassionately engage with patients and family members whenever an inquiry arises about medical aid in dying, acknowledging that, ultimately, it is a matter between a patient and their doctor,” Limm said.

Advocates hope HB 1823 will bridge obstacles to medically assisted death by including qualified advanced practice registered nurses and physician assistants among those authorized to prescribe the life-ending medication, consult and perform the required mental health evaluation.

The Legislature gave APRNs full authority to practice medicine independent of a doctor in 2009. There are around 1,100 APRNs with prescriptive authority in Hawaii as of 2021, according to the Hawaii State Center for Nursing. And Hawaii’s physician assistants, while required to work under a doctor, were granted an expanded scope of practice in 2019 to give them more freedom to diagnose and treat patients.

Advocates argue that by enabling APRNs and physician assistants to facilitate medically assisted death within their scope of practice, the legislation simply allows these providers to practice medicine to the full extent afforded to them by law.

The measure garnered support from a wide range of health care workers and organizations in testimony, including the Hawaii Board of Nursing and the Hawaii Pacific Health, with some notable holdouts.

The Hawaii Psychiatric Medical Association urged “prudent restraint” in making Hawaii only the second state to expand authority to practice assisted death beyond doctors, following New Mexico in 2021.

HPMA spokesman and licensed psychiatrist Dr. Thomas Cook, who treats severe depression and suicidality, said widening the group authorized to perform a mental health evaluation increases the risk that providers will miss signs of depression or other mental conditions that may impair decision making.

“We already know that family doctors and ER doctors and others miss a diagnosis of major depression more than 50% of the time, and these are people with far more training in mental health assessment than physician assistants,” Cook said.

DOH Office of Health Status Monitoring chief Kim says the legislation “requires appropriate clinical specialization” if APRNs and physician assistants perform mental health assessments and that the state will leave it up to individual boards to “determine if the scope of practice is appropriate.”

Against The Clock

After weeks of rejections from doctors on Maui, Compassion & Choices connected Coleman and his family to Pablo Stewart, a psychiatrist with The Queen’s Health System on Oahu who was willing to guide the family through the assisted-death process.

Once they make an oral request to their attending doctor, Hawaii law requires patients to wait another 20 days before making the necessary second request. But Coleman was approaching his end, fast.

“It was very scary, I was just praying every night, ‘God, please let my brother last until the day,’” his sister, Coleman-Jakubczak, said.

Advocates and many health care providers say Coleman’s experience is not unique and that Hawaii’s mandatory 20-day waiting period, which is the longest in America, needlessly prolongs the agony of patients in their last days.

The standard waiting period in other states is 15 days to give patients time to reconsider their decision. Some require shorter gaps, with California and New Mexico recently adopting waiting periods of only 48 hours.

“Now we realize that a 15-day waiting period is completely unnecessary, it’s just a total suffering period,” Compassion & Choices Hawaii Director Sam Trad said.

And not just the pain – qualified patients are dying before they can end their life on their own terms. One-third of qualified patients at Kaiser Southern California died before they received the life-ending medication, a 2018 study found.

While the DOH does not publish data on these early deaths, Kaiser Hawaii’s Miller said of the nearly 130 qualified patients he has seen in three years, an estimated 30% died before the 20-day wait was up.

“The (patients) simply wait too long to make the request,” Miller said. “When I walk in (their home) and I talk to them and they’re lying in bed on oxygen and they’re skin and bones, I know they’re not going to make the 20 days.”

If HB 1823 passes, Hawaii would lower the minimum gap between oral requests to 15 days to match most other jurisdictions. And it would allow the attending physician to waive the period altogether if they judged the patient would not survive the waiting period.

Again, some prominent professionals protested these proposals. In testimony to the Senate, palliative care physician Daniel Fischberg wrote that patients less than two weeks from death “nearly always lack the ability” to make independent decisions.

“Passing this provision would open the door to abuse by authorizing patients that are unable to self-determine and self-administer the lethal drugs or abuse by physicians succumbing to pressure to expedite the process,” Fischberg wrote.

Fischberg is the medical director of the Queen’s Medical Center’s Pain and Palliative Care Department but did not testify in an official capacity, a Queen’s spokesperson confirmed.

But HPH assisted-death coordinator Cantillo said she felt confident in supporting the option to waive the waiting period after witnessing how doctors cared for the 18 patients in her health system that did die by taking the life-ending medication.

“I don’t think (waiving the waiting period) will be abused,” Cantillo said. “You can see from our data, we have to go through this process very rigorously, and we take it to heart to follow the patients’ decision.”

‘It Can Be Beautiful’

George Coleman chose Nov. 7, a Sunday, as his day to die.

“He lived next to a school, and he didn’t want the children to be traumatized,” Coleman-Jakubczak said.

The sun rose to reveal a gorgeous sky, a blazing blue just as Coleman had hoped. His sister said he had decided everything, including where his ashes would be scattered and who would join the small circle of family and friends with him as he died.

Stewart, the attending physician, personally delivered the end-of-life prescription from Oahu, and Coleman had his chauffeur colleague and best friend drive the doctor from the airport. The entire group held balloons – white for family, blue for friends – singing “I Will Remember You” by Sarah McLachlan.

Others joined over FaceTime while a chorus of limousine horns blared along Kula Highway in his honor.

Then at 10 a.m., above miles of ocean, Coleman drank his medicine.

Coleman-Jakubczak hopes the new legislation will make medically assisted death easier to access for other dying patients. She knows her brother would have as well.

“His last words to his hospice nurse were to ‘pass it on, it can be done,'” she said. “I get that (assisted death) can be scary for people, but it can be beautiful.”

Civil Beat’s health coverage is supported by the Atherton Family Foundation, Swayne Family Fund of Hawaii Community Foundation, Cooke Foundation and Papa Ola Lokahi.

Civil Beat’s coverage of Maui County is supported in part by a grant from the Nuestro Futuro Foundation.