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In January, Dr. Charles Miller will come out of retirement to prescribe medication to terminally ill patients, allowing them to die in their sleep.
It’s a controversial job, one that many local doctors might not want to take on. But Miller, a longtime Honolulu oncologist, said he is eager to lead the way as Hawaii’s medical field reckons with implementing the state’s new medical aid in dying law.
He has been hired by Kaiser Permanente Hawaii, where he was formerly the chief of oncology, to serve part-time as the attending physician in all aid in dying requests at Kaiser through the end of 2019.
“I have seen thousands of cancer patients die over the years,” Miller said. “My belief has been that patients have a right to choose how, when and where they die — that’s as much of a right as anything in the Constitution, as far as I’m concerned.”
Modeled after Oregon’s 20-year-old “Death with Dignity Act,” Hawaii’s “Our Care, Our Choice Act” kicks into effect on New Year’s Day.
The law establishes a patient’s right to request assistance in dying — not receive it. There are legal protections in place for medical providers who wish to participate in good faith and for those who wish to opt out.
Medical providers are not required to alert patients about the program. This means that the law greatly depends on a motivated patient becoming aware of the program and then utilizing his right to request participation in it.
Experts say the program’s success requires advanced coordination from doctors, nurses, psychologists, pharmacists and coroners — some of whom have petitioned against the passage of the law that establishes the program.
At Kaiser, Miller said his goal will be to dissolve the uncertainty he said many Hawaii physicians seem to feel about medical aid in dying. He wants his colleagues to become more comfortable providing this method of treatment to qualifying patients — those that are mentally competent and expected to live six months or less.
“My job there is to work myself out of a job,” Miller said. “By January 1, 2020, I hope that Kaiser physicians will be in a position that they don’t need me anymore.”
“I’m going to do all the education that I possibly can, I’m going to give lectures, I’m going to talk to individual physicians, I’m going to do whatever can be done to make this an acceptable part of end-of-life care, like it already is in states like Oregon and California.”
On the cusp of the law’s enactment, medical professionals are developing standard procedures and troubleshooting hurdles. But many questions remain unanswered: Will insurance companies pay for the program? How will coroners determine the cause of death? Which drug will become Hawaii’s medical aid in dying standard?
“I think both physicians and patients need to understand that this is a totally new experience for us here in Hawaii and everybody should have a little patience,” Miller said. “Over time, this will become an accepted part of end-of-life care. This needs to be as much a part of aloha in Hawaii as any other aspect of dying.”
Approximately 10,000 Hawaii residents die each year. State health regulators estimate about 40 of them will seek medical aid in dying in 2019.
But the rollout of the state’s new medical aid in dying program is expected to have farther-reaching effects.
The law, for example, requires medical providers to advise participating patients of all alternative end-of-life treatment options available to them, including hospice and palliative care. Health care providers say this stipulation opens up great opportunity to advance public knowledge of advanced care options.
“Our goal really is to make sure hospice isn’t thrown under the bus, that Sarah Palin ‘death panels’ don’t come out and that we have a much more comfortable discussion about all end-of-life options and palliative care,” said Lorrin Kim, chief of the state Health Department’s Office of Planning, Policy and Program Development.
“We don’t want to equate hospice with death care or equate palliative care with six months left to live. That’s our strategic opportunity, because all of health care can save a lot of time, money and pain if we can talk about these issues earlier.”
Kokua Mau, the state’s advanced care planning resource, is in the process of developing an online guide to all options for end-of-life care, including hospice care, palliative care and medical aid in dying.
“We are trying to educate people on all of the options, with medical aid in dying being just one of them,” said Executive Director Jeannette Koijane. “We seek to be a neutral voice and a source for information.”
The guide, set to launch before Christmas, is endorsed by the state Health Department. The Health Department is advising health care facilities to adopt internal policies that support a patient’s right to choose to participate in the medical aid in dying program, regardless of whether the facility endorses it.
Kim said he estimates about 80 percent of local medical providers have indicated that they will adopt neutral policies.
The remaining 20 percent are split between those that have indicated that they will develop policies to reflect their opposition to the law and those that are writing policies to match their support for the law, he said.
“They’re as left and as blue as can be, but they believe in the power of preventative medicine,” Kim said. “Then we have some others who are probably a little more spiritually oriented and they think that this is a patient right — and who are they to stand in the way? So it’s all over the place. It’s a very nuanced, complex issue.”
The Healthcare Association of Hawaii, which represents the state’s hospitals, nursing homes and hospice organizations, has hired lawyers to help its members vet their policies as they develop them.
The group has also connected its members to healthcare providers in states that have already passed similar legislation so they can learn from their experiences.
In February, the Health Department will host a continuing education event to provide medical workers with recommended techniques for talking with their patients about medical aid in dying.
“We’re going to be talking about how to manage the physician’s own biases in order to have that neutral conversation that is as clinical as possible,” Kim said.
The Health Department is taking the lead in educating stakeholders, which include doctors, pharmacists, psychologists, insurers and coroners.
“At its heart, this really is a provider-patient issue and what happens in that examination room is really up to those two people.” — Lorrin Kim, Hawaii Department of Health
Kim said the department is emphasizing a part of the law that requires physicians to inform patients of alternative treatment options, such as hospice care and pain control. It is also recommending that medical aid in dying participants enroll in hospice care.
On July 1, the department will submit to the Legislature a series of recommended amendments to the law based on any problems that may arise during the first six months of its implementation.
“At its heart, this really is a provider-patient issue and what happens in that examination room is really up to those two people,” Kim said. “We are here just to provide guidance.”
Many local medical providers are still debating the policies that will guide their use of medical aid in dying. A minority of providers have already solidified their strategies — and they’ve come up with drastically different approaches.
As a Catholic provider, St. Francis Healthcare System opposes the use of medical aid in dying. It will not allow patients to consume medications that hasten death on its property.
If a St. Francis patient chooses to participate in the program in his own home, the organization will not interfere, nor participate, with his decision. St. Francis will, however, assist the patient’s family with bereavement support.
Dr. Traiq Al-Mutawa, chief medical officer at St. Francis, said countless hours were spent on developing this internal policy. It was a difficult process with no absence of debate about how to move forward, he said.
“We realize that not every patient we serve will agree with our position, however we recognize it is equally important to never abandon our patients or our families,” Al-Mutawa said in a prepared statement.
“We will be upfront with our patients and their families on our policies regarding hastened deaths to avoid any surprises or unfulfilled expectations. We will always have a conversation to understand a patient’s concerns and fears and how we can best address them.”
As supporting evidence of the organization’s opposition to medical aid in dying, Al-Mutawa noted this: In some cases, St. Francis patients have been discharged from the hospice program after experiencing a dramatic improvement in their health status.
At Kaiser, the process, according to Miller, will work like this: A patient will request participation to their primary care physician, oncologist or neurologist. The request will be referred to one of Kaiser’s two medical aid in dying navigators — a licensed clinical social worker and an advanced practice registered nurse.
It is the responsibility of the navigator to ensure that the patient is eligible, namely that they are mentally competent and have a prognosis of six months or less left to live.
The patient will also be vetted by a consulting physician and a mental health professional. Finally, no sooner than 20 days after the patient made her initial request to her primary care provider, the patient will be able to make a second oral request. At that time, Miller will be able to prescribe the medication to the patient.
All told, the prospective medical aid in dying patient must make three time-sensitive requests — two oral requests and a written request.
“The law — it’s overkill,” Miller said. “It’s got an overabundance of safeguards. For example, we’re the only state that has a requirement for a third provider, the mental health provider, to do an independent patient review. No other state that has medical aid in dying has that requirement.”
Brian Goodyear, a semi-retired psychologist on Oahu, said the Hawaii Psychological Association has expressed interest in developing guidelines for psychologists and is also planning to compile a list of psychologists who are willing to perform the required mental competency examination.
HPA started educating psychologists about the details of the law at its annual convention in October, Goodyear said.
“It think it’s quite similar in some ways to mental competency exams that have been done for a long time to determine if a person is mentally competent to stand trial or to manage their financial affairs or to make some other medical decision,” he said.
Hawaii Pacific Health is devising a plan that would help medical aid in dying patients cut to the front of the line for an appointment with a mental health provider.
That’s because a months-long wait time for an appointment with a psychiatrist or psychologist is not uncommon. But medical aid in dying patients won’t have the luxury of time.
The law specifies telehealth as a permitted use for the mental competency evaluations so as to make them more accessible to people who live in remote areas and might have difficulty securing a face-to-face appointment with a psychiatric provider.
“The law — it’s overkill. It’s got an overabundance of safeguards.” — Dr. Charles Miller, Kaiser Permanente
The mental competency exam requirement is one of several stipulations that makes Hawaii’s law distinct from similar laws governing medical aid in dying in other states.
Another example: In California, patients often fill their aid-in-dying medication prescription at a pharmacy but don’t pick it up. That won’t fly in Hawaii.
“They like knowing that it’s at the pharmacy ready for them in case they want it,” Kim said. “But in Hawaii, our law says that a Schedule II narcotic must be filled and picked up within seven days. And so what will that do to the follow-through? It’s one thing to have it at the pharmacy, but it’s another thing to have it in your bathroom cabinet.”
There are other unknowns.
The most commonly used drug for medical aid in dying costs about $4,000, while the less expensive option costs about $400. The law is silent on which drug should be used, and it will be up to doctors and pharmacists to decide.
Neither drug currently appears to be on the shelves of local pharmacies on a routine basis, according to Kim.
It’s also unclear whether insurers will cover expenses associated with Hawaii’s medical aid in dying program. HMSA Medical Director Rae Seitz said she’s not aware of any local insurer that has announced what it does and does not plan to cover.
At Hawaii Pacific Health, Advanced Care Planning Coordinator Michelle Cantillo is the point person for physicians who have questions or concerns about medical aid in dying.
“Their patients will ask them about it, so they should make sure they know how to respond to those questions,” Cantillo said. “I’m telling the physicians that they really have to take a step back and be aware of their own moral values — what do you want to promote and what you don’t you want to promote?”
Cantillo said it’s uncertain whether HPH facilities will have enough participating physicians and support staff to assist patients in receiving medical aid in dying.
“They have an option,” she said. “We want them to feel comfortable and know that they have a say in this.”
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