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Healthcare , Law – November 6, 2018

Dying is Now A Choice

Photography: Aaron Yoshino

Hawaii’s Medical Aid in Dying law takes effect Jan. 1, but doctors are among the local professionals who are not ready to deal with the law.

Mary, a 78-year-old Hawaii resident, doesn’t look like someone who would want to end her own life.

She wears bright colors, is quick to laugh and visits with friends daily. She also believes she has at least 10 years of good life left to live. And yet, in her small living quarters, Mary says she’s stored enough drugs to end her life at least three times over, in several ways.

For this former nurse, storing the life-ending chemicals isn’t the result of depression or a desire to die. As she ages and deals with increasingly serious health problems, and sees her friends pass away, Mary grows more certain that she wants a say in the way she dies. And so far, the prospect of self-administered poison is more comforting than the unknown.

Hawaii's new medical aid in dying law will go into effect January 1, 2019, Photo: GettyImages.com
Photo: GettyImages.com

“I want to have total control,” Mary tells Hawaii Business as she sits on a couch in the late afternoon sunlight. “The medical world is very good at trying to keep you alive, and I’m not against it. They do wonderful things … but you end up with tubes in you in the hospital if you’re not careful.”

Mary asked that we not use her full name, and her preference for anonymity reflects the social stigma that remains around medically assisted death. Though she rarely talks about it, she has been thinking about the issue for decades.

“The medical world is very good at trying to keep you alive, and I’m not against it. They do wonderful things… but you end up with tubes in you in the hospital if you’re not careful.”
 – Mary, a 78-year-old Hawaii resident

She says she first started setting aside life-ending drugs in the 1960s when she worked in hospitals where some patients suffered drawn-out deaths without hope of recovery. She didn’t want that for herself. She’s now one of a community of people who say they may one day take advantage of the Our Care Our Choice Act, Hawaii’s new medical aid in dying law.

The law was passed by the state Legislature this spring and signed into law by Gov. David Ige in April. It takes effect Jan. 1 and stipulates that only terminally ill patients with less than six months to live can request a doctor’s help to end their lives.

John Radcliffe, 76, is a terminally ill patient who could legally take advantage of the new right-to-die law next year.

In June 2014, Radcliffe, a former lobbyist, was diagnosed with incurable colon cancer and given six months to live. He fought the disease. When he spoke with Hawaii Business in June, he had not only survived the cancer for four years, but also weathered 15 emergency room visits, four hospitalizations and 67 rounds of chemotherapy. During that time, he had also become one of the law’s most outspoken advocates.

John Radcliffe, Right-To-Die-Law, Photo: Aaron Yoshino
John Radcliffe, a former lobbyist, was diagnosed with incurable colon cancer & given six months to live. | Photo: Aaron Yoshino

“It offers people something they haven’t had before – a hope that they won’t suffer, a hope that they won’t have to die in a screaming mess,” he says. When he says this, Radcliff isn’t only reflecting on the kind of death he could have. He’s also thinking of the dozens of other deaths, some experienced by friends, some by strangers he’s only heard about. According to medical professionals on a Department of Health advisory committee, patients with terminal cancer or Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis or ALS, are among those most likely to ask about life-ending medication.

“My tank still hasn’t hit empty. I’m going to live as good a life as I can for as long as I can.”
 – John Radcliffe, a former lobbyist

“I know people, friends, who have died horrible deaths because they didn’t have the right to die,” Radcliffe says. “And I’ve had so many people call me up and tell me stories, like about their mother who died 25 years ago and begged them to put her out of her misery, but they never did.”

Despite his prognosis, Radcliffe says he still isn’t ready to die. “My tank still hasn’t hit empty,” he says. “I’m going to live as good a life as I can for as long as I can.” But, he adds, the ability to procure life-ending medication, if he meets all the requirements, will give him a measure of security he hasn’t had.

Hawaii’s Our Care, Our Choice Act includes rules aimed at warding off potential abuses, like euthanasia or undue influence from greedy relatives. The criteria include:

  • A prognosis of less than six months to live from two different doctors (the prognosis must be related to an illness, not age or disability).
  • An evaluation from a mental health professional that confirms the patient has the mental capacity to make the decision.
  • Requests for life-ending medication, made at least 20 days apart, plus a written request.
  • The written request must be overseen by two witnesses, one of whom cannot be a relative, someone who would inherit part of the patient’s estate or someone associated with a healthcare facility where the patient lives.

When the time comes, the patient must self-administer the life-ending drugs.

For years, a growing number of people, medical professionals among them, have complained that as technology has gotten better at keeping people alive, we’ve gone overboard, sustaining physical life long after quality of life has dwindled or disappeared. Data show that when patients know their treatment options and specify their wishes, they choose to be treated with less medical intervention than the default care, according to a study published in the Journal of the American Medical Association in 2009. The medical aid in dying movement pushes back against the idea of “life at any cost.”

Six other states and the District of Columbia have legalized medically assisted death. Hawaii’s own controversial law was passed in April with a nine-month rollout period aimed at giving physicians, nurses, pharmacists, hospice workers and patients time to prepare. But some medical professionals we interviewed say they fear that doctors and patients don’t yet have the tools they need to engage in thorough, meaningful discussions about the right to die and its complexities.

The subject of death, in general, has also become something of a taboo in American society, something we put out of our minds as much as we can for as long as we can, says Bodhi Be, a clergyman, talk show host, hospice volunteer and owner of The Death Store on Maui.

“We don’t talk about death,” he says. “Everyone knows they’re going to die. But not a lot of people really, truly know it.”

Studies show most people don’t even have wills, and the number of those who do has been decreasing over the last three decades, according to a Gallup survey. So when medical aid in dying laws are proposed, they tend to spark heated debate on par with other life- and-death issues, like abortion. Debate in Hawai‘i over medical aid in dying began to ramp up after Oregon passed its law in 1997. In 2002, Hawaii came close to legalizing the practice: The state House passed the bill but it fell short by three votes in the Senate. Similar measures were introduced again and again, but none passed until 2018.

On July 31, the Health Department’s advisory committee for Our Care, Our Choice met for the first time in Honolulu to discuss the problems that might arise from the new law, and how to head them off. Many of the hospice administrators we spoke to over the summer said they had not yet begun creating policies for Our Care, Our Choice, or even decided if or how they would assist patients who wanted life- ending medication. Some pharmacists said they hadn’t heard anything about the law. The sense of general unpreparedness had not gone unnoticed by the advisory group members.

“Anticipate that on Jan. 2 at 8:30 a.m. someone is going to call their physician about this. So we need to make sure – for the sake of good government and human decency – that patients know what to do,” says Lorrin Kim, the Health Department chief of planning, policy and program development.

For some members, the new law runs up against an old problem: Many doctors only have brief appointments with patients. A conversation about wanting to die, and whether it’s the right decision, is among the most complex two people might have.

“There is a huge gap between where we are and where we need to be,” says Dr. Lee Buenconsejo-Lum, a professor at UH’s John A. Burns School of Medicine. “If the doctors do know how to have that conversation, then the other barrier is time. … I think that’s why some patients are so confused at this time in their lives, because we don’t have enough time to discuss all the options with them.”

Lum suggests the state offer training resources to doctors before the Our Care, Our Choice law takes effect.

Other problems are more logistical. For instance, while Oahu has a medical examiner, the Neighbor Islands don’t. Instead, the task of examining a body and pronouncing a person dead is done by the police chiefs, who act as coroners, says advisory member Brenda Ho, the CEO of Hospice of Hilo. Ho worries that police departments have not yet been trained in cases of medical aid in dying, and without proper communication, might not know how to handle the investigation and pronouncement of death for someone who has taken their life legally.

“We want to make sure police know beforehand that it’s medical aid in dying, so that families don’t end up with yellow tape around their houses,” Kim says.

Others fear the medication itself. Hawaii already has a serious opioid crisis, and Kim worries that unused prescription medication could fall into the wrong hands, be improperly discarded, be ingested by animals or contaminate the water system.

The most common drug for medically assisted deaths is secobarbital, a barbiturate that induces sleep and in large doses, death, by slowing the brain and nervous system. A lethal prescription dose involves opening more than 100 capsules and mixing them into liquid, a deliberate process that advocates say wards off accidental overdoses.

Over and over during this summer’s meeting, members of the Health Department’s advisory committee, who were mostly members of the medical community, noted that most doctors are uncomfortable, at best, with the new law.

Malachy Grange, a former nurse who is on the advisory board, says that discomfort could present problems. When he speaks to people who are interested in using medical aid in dying, many say they’re concerned about opposition from their doctors, none of whom are required to prescribe life-ending drugs.

“I had eight years to do an M.D. PH.D., three years of internal medicine, a year of fellowship training and now 18 years of practice. And I didn’t have one minute of training in how to take a life.”
 – Dr. Daniel Fischberg, medical director of the Pain & Palliative Care Department at The Queen’s Medical Center

“I’ve met people who have friends and loved ones who are waiting for this. … And some have said they know their doctor doesn’t approve of it,” he says. “They say, ‘If my own PCP (primary care practitioner) says, “I won’t do that because it goes against my religion,” then where do I go? And who knows how long I’ll live?’ ”

Dr. Daniel Fischberg, medical director of the Pain and Palliative Care Department at The Queen’s Medical Center, says he understands why many physicians have issues with medical aid in dying.

“It is viscerally a problem (for doctors) to use anything to hasten death,” Fischberg tells Hawaii Business. Fischberg is not a member of the advisory committee but attended meetings as a member of the public. He says the idea of giving a patient life-ending medication goes against everything that doctors learn, practice and promise throughout their careers.

“I had eight years to do an M.D. Ph.D., three years of internal medicine, a year of fellowship training and now 18 years of practice. And I didn’t have one minute of training in how to take a life … no one taught me the pharmacology of it and nobody taught me how to emotionally deal with that,” he says.

If Hawaii’s per-capita numbers mirror what has happened in other states with similar laws, only several dozen patients a year will actually take advantage of medically assisted dying, according to Kim of the state Health Department, who adds that for every 100 people who ask about medical aid in dying, only one typically follows through.

Although doctors will now have permission to prescribe deadly drugs under Our Care, Our Choice, they’re under no legal obligation to do so – something that could make it hard for terminally ill patients to get life-ending drugs. And doctors who say they are willing to prescribe the drugs have historically resisted being put on a directory, perhaps because of the stigma associated with what has often been pejoratively termed “doctor-assisted suicide.” To address this, some medical organizations, like Kaiser, have developed systems for helping those who have expressed interest in medically assisted death by assigning them caseworkers and referring them to doctors who are open to treating them, according to representatives from the advocacy group, Compassion & Choices.

In late July, Fischberg met with 27 other hospice and palliative medicine doctors from across the state. Some had reservations like his, he says.

“The theme was, nobody’s comfortable with this,” he says. “I didn’t get the sense that anybody felt today that they were ready to take it on.”

That unpreparedness worries Rae Seitz, the medical director at HMSA and a member of the Health Department’s advisory board.

While the law specifies that doctors can offer medical aid in dying, it does not require any training nor establish guidelines for best practices or a repository of helpful information (although the committee is working on that), according to Seitz. That means many patients may deal with a physician who is unprepared to talk about death, she says. And if patients feel judged or get bad information, that’s a further burden to someone already grappling with illness, impending death and the stigma of seeking life-ending drugs – all during one of the most difficult parts of their lives.

Seitz, like Fischberg, says she completely understands why some
patients want to end their lives. She has even been approached by patients who wanted life-ending medications.

“People have asked me for help in the past,” she says. “My response was always, ‘Look, why don’t we get to know each other and get you back to a place where life is still worth living? And if at the end of all of that you still want my help to help you die, I would,’ ” she says. But she never needed to follow through, she says.

Seitz says patients will soon have the choices they want, but perhaps not the support that they need to make the best decision.

According to Mary, the former nurse who’s been planning for her death for decades, the new law has enough safeguards. In fact, she says, it may be too restrictive for her, forcing her to stick to the old plan of ending her life herself if and when she wants to.

Like many who supported the law, she sees the right to die as a matter of personal choice and thinks there are multiple valid reasons why a person might want to end their life. Ideally, she says, the government would also offer mental health care to make sure each person has the best chance at a happy life. Then, she thinks, we should let people make their own decisions about life or death.

“You should be allowed to get your pills from the pharmacy,” she says. “It’s an insurance policy. Half the time, when people have that kind of thing they don’t use it.”

There’s a stigma around speaking about death that stifles a full-blown discussion. Several people who are considering using life-ending drugs after the law takes effect, or have a loved one who is, said they didn’t want to be interviewed for this article because the matter is too personal.

Radcliffe says an aversion to such conversations are common. “People are scared to death of death,” he says.

The prevention of unnecessary suffering is often used as an argument in favor of medical aid in dying, especially for patients with terminal illnesses. But a 2018 study conducted by Oregon’s Public Health Division, covering the 20 years of the state’s Death with Dignity law, ranked pain well down the list of reasons that 1,275 patients gave for ending their lives. “Losing autonomy” was the primary concern (91 percent) followed by being unable to do the activities that made life enjoyable (90 percent). Following that were “loss of dignity” (76 percent); “losing control of bodily functions” (46 percent); and being a burden to family, friends or caregivers (44 percent). “Inadequate pain control or concern about it” was second-to-last (26 percent), followed by the financial implications of treating their illness (4 percent).

Seitz says she’s seen patients change their mind about medical aid in dying because they realized there were still things they wanted to do until the very end.

“In all the years I practiced, I never had to make good on my promise to help someone die, because (once we improved their quality of life with treatment), everybody ended up feeling like, ‘I don’t want to go now’ even as they were getting sicker,” she says. “We found there were still fences that they wanted to mend, messages they wanted to give people in their lives.”

Even among those with reservations about Our Care, Our Choice, many say they respect the decision of those who want to die, especially those who have thought long and hard about the decision.

“I just don’t see why it’s anyone else’s business,” Mary says. And with Our Care, Our Choice, it is and it isn’t.

Annabel Anae, Mobile Audiology Services, LocalKine Biz, Hawaii Business Magazine, Photo: Aaron Yoshino
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