Health care industry prepares for ‘Our Care, Our Choice Act’
New law that takes effect Jan. 1 will allow terminal patients to end their lives
At Hospice Maui, where many people spend their final days, it’s not unusual to hear patients talk about wanting to end their lives early, said Chief Executive Officer Dr. Greg LaGoy.
Until now, that wasn’t an option. But on Jan. 1, patients in Hawaii will have that choice for the first time as the “Our Care, Our Choice Act” goes into effect, allowing terminal patients to request prescription medication to end their lives. It’s a law that’s been a long time coming in Hawaii but has generated mixed feelings among the medical community most impacted by the changes.
“We don’t have a position on this,” LaGoy said. “Our position is to assist people who are dying. If that person is taking actions to hasten that within the law, we will still be able to provide hospice care.”
Hawaii became the seventh U.S. jurisdiction to allow patients the choice when Gov. David Ige signed the measure into law on April 5, joining Oregon, Washington state, Vermont, California, Colorado and Washington, D.C.
Hawaii’s law allows mentally competent adults who have a terminal illness with less than six months to live to seek out “prescription medication that would allow the person to die in a peaceful, humane and dignified manner.”
Patients must get confirmation from two health care providers of their diagnoses and a determination from a counselor that they are capable and not suffering from any conditions that could impair their judgment. Patients must also submit two oral requests and a written request before obtaining the prescription. They can rescind their request at any time and are not obligated to use the medication.
Lorrin Kim, head of the state Department of Health’s Office of Planning, Policy and Program Development, said that staff members have been working to educate the community ahead of Jan. 1, but there are still “concerns about provider access, since this is such uncharted territory for Hawaii’s physicians, pharmacists and insurers.”
“I already know of a couple of ‘hard no’s’ from providers who will not participate, or allow MAID (medical aid in dying) activities to take place on their premises,” Kim said. “On the other hand, there are several strong ‘yes’s,’ and we think most large systems will leave it up to their panel of doctors to participate or not on an individual basis. Most, I think, will take a ‘wait-and-see’ attitude until names around town start to circulate and expertise grows.”
Hospice and Hale Makua
At Hospice Maui, where staff work daily with dying patients, the law won’t change the basics of what the organization does, LaGoy said. However, it has forced the staff to discuss what they would do if the question comes up.
“We’ve spent a lot of time and effort in having training and conversations with our staff so that they’re not afraid of the topic, so that they know who to refer people to,” LaGoy said.
LaGoy has decided that the most sensitive path for Hospice Maui to take is to “not be actively involved in this law.” The organization will neither prevent nor assist people from going ahead with the process.
“We’re not allowing people to exercise their right in our facility or on our property, because that could have a dramatic effect on people’s perceptions of what we do,” LaGoy said. “So what we would do if someone wanted that is we would try to find a setting where they could exercise their legal right. So, for instance, their own home or a home of a family member.”
About 80 percent of Hospice Maui’s 80 patients already receive care at home, which includes assisted living facilities like Roselani Place, that offer a homelike setting, LaGoy said. About 15 percent are in Hale Makua’s two facilities, and 5 percent reside in the Hospice Maui Hale, which provides hospital-level care for people too ill to go home. Patients at the hale are typically only there for a week or two.
LaGoy said that if a patient on hospice care wanted to request the medication, the patient’s care team and Hospice Maui’s “interdisciplinary group,” made up of a nurse, nurse’s aide, social worker, chaplain and doctor, would gather together to bring everyone up to speed. The social worker would likely then have an in-depth conversation with the patient about his or her wishes.
“Our response will always be with the deepest respect for the patient and the strongest sense of professionalism and duty to this community,” LaGoy said.
If the patient wants to move forward, LaGoy said Hospice Maui would continue to care for the patient but wouldn’t help acquire the medication or find a doctor to prescribe it.
“There are going to be public resources where they’ll be able to go for that information,” he said. “If needed, we will point them toward those public resources so that they can do what they need to do. We would do that for anyone no matter what they’re wanting to do.”
Staff would not be there at the moment when the patient takes the medication, LaGoy said. However, they would be available to provide care immediately after and would offer bereavement services for the family as Hospice Maui normally does.
In his 29 years as chief executive officer of Hospice Maui, LaGoy said he has often heard incoming patients talk about wanting to end their lives early because they imagine all the suffering that lies ahead. But he said that two big things usually happen in hospice care — first, hospice addresses most of the symptoms, “and the fears of the suffering simply don’t materialize,” LaGoy said. Second, when a patient and family learn to face death head-on in a supportive environment, they experience immense personal growth.
“The time that the person was afraid would be an awful time . . . turns out to be one of the most rich and powerful times of their whole life, and they wouldn’t want it to end,” LaGoy said. “Because there is deepened intimacy of connection with family members, a deepened appreciation for the overall trajectory of their life that they get to reflect upon.”
Meanwhile at Hale Makua Health Services, Chief Executive Officer Wesley Lo also was grappling with the new law. Before, it was just a discussion. Now it’s going to be reality, and Lo said it’s going to take some time for the community to get used to the idea.
“Number one is just understanding the whole notion of medical aid in dying,” Lo said. “It’s an emotional issue, as it was with the Legislature, and I think the community members need to absorb and digest the notion.”
Hale Makua has just under 300 patients and 450 employees between its Wailuku and Kahului facilities. Lo said the nonprofit’s board was still working on its policy under the new law, and he was hopeful board members would have something in place by Jan. 1. For Lo, many factors have to be considered — the patient, the family dynamics, the caregivers and the pharmacies. The more he thinks about it, “the heavier it becomes,” he said.
“The emotions are all over the place, and for caregivers, it’s hard because you see all sides of it,” Lo said. “I think that’s the challenge in solving this because we all have our view of this, and yet we also have a fiduciary duty to our organizations and our community.”
Maui Health System operates Maui Memorial Medical Center, Kula Hospital and Lanai Community Hospital. The system did not respond to requests for comment.
Death with dignity
There are some Maui physicians who have no mixed feelings about the law. Dr. Andrew Kayes said he is “adamantly against it.”
“If you think suicide is wrong, you should think physician-assisted suicide is wrong,” said Kayes, the medical director of Maui Diagnostic Imaging.
As a radiologist, Kayes said he likely wouldn’t get a request from a patient, but if he did, he would first find out why.
“I would ask, ‘Why would you want to end your life?’ “ Kayes said. “If they say, ‘Because I’m in pain,’ there’s good ways to manage pain. If they say, ‘I’m sad, I’m scared,’ there’s good ways to manage that. I would look them in the eye and say, ‘I know you’re in pain. I know you’re scared. We got this. We’re going to do this together.’ “
Kayes said he believed providing people with hospice care would be true “death with dignity,” as opposed to giving them some pills so they could end their lives. He said letting a patient do so would abandon the Hippocratic Oath he swore as a young medical graduate to “do no harm” and to never give poison to anyone if asked.
“Doctors can’t predict the future with 100 percent accuracy,” Kayes said. “We’re all terminal to some extent. I’ve seen many anecdotal cases of patients who were going to pass away in six months, and they were still alive two, three years later. I think in some of these cases it’s sad, and these people are facing terrible problems, but at the same time, I don’t think that’s right.”
Kayes pointed to the example of Lauren Hill, a 19-year-old basketball player at St. Joseph’s University who was diagnosed with an inoperable brain cancer, but spent her final months raising money for cancer research and playing in her last basketball game.
“She took a terminal illness and turned it into something that helps society,” Kayes said.
But for the lawmakers who supported the bill, it comes down to a personal decision that patients should be able to make for themselves.
“We passed the law so that people have a choice and could make the best decisions for themselves and their family,” said Sen. Roz Baker, who chairs the Senate Commerce, Consumer Protection and Health Committee. “It really is about empowering patients at the end of their lives.”
Baker said lawmakers also wanted to protect health care providers who go along with a patient’s wishes. The law protects people and health care facilities in these cases from civil or criminal liability, and it also doesn’t require anyone to participate in the patient’s choice.
Baker and other lawmakers have also touted the strength of the bill, which was designed to be even more strict than the laws that came before it. Baker believed the bill’s requirement that a person have a terminal diagnosis with six months to live was a strong enough safeguard to help prevent just anyone from using the law.
It’s a felony under the law to make, complete, alter or endorse a prescription request for someone else, or to conceal or destroy someone’s request for a prescription. Coercing a patient into requesting a prescription is also a felony, and the act states that it does not authorize mercy killing, assisted suicide or euthanasia.
“I think the Legislature, because we did it over several years, it wasn’t something that was rushed,” Baker said. “There was a considerable amount of thought, and it’s clear that it’s not something that somebody can do to somebody else. It’s something that empowers the patient to make their determination . . . how they want to manage their last six months.”
Baker added that “some people may go through the steps and counseling, and get all the medications and may never use them. We’re looking at how can you take those drugs back, because you certainly don’t want them on the street.”
According to the law, anyone who has control of the medication after the patient’s death must bring it to a “qualified facility” for disposal or “dispose of it by lawful means.”
For state Department of Health staff, getting the unused prescriptions back is just one of the many issues the department is trying to solve as the law takes effect next year.
While the department is responsible for implementing the law, it didn’t receive additional funding and has no new legal authority to enforce or regulate it, Kim said. Thus, the department has mostly focused on educating the public and the medical community.
“Most of it is the burden of the attending physician,” Kim said. “The attending physician has to guide the patient through all the paperwork. They have to coordinate the second opinion, the mental health opinion, the pharmacy.”
Kim said he expects many health care providers to take a stance of “engaged neutrality,” which basically means that a health care system is “neither for nor against it, but they will respect the wishes of the patient.”
To Kim’s surprise, much of the training has centered on first responders and law enforcement. If a person decides to go somewhere alone to take the pills — the beach, for example — and people find the body, the police would likely be called, Kim said. So, the Health Department met with law enforcement in each county to talk about classifying medical-aid-in-dying patients as attended (or expected) deaths.
“Attended death is the least burdensome on a family,” Kim said. “If law enforcement thinks it’s an unattended death, they’re obligated to investigate, hold the body, do an autopsy — things that may be upsetting to the family who just wants to move on.”
The department also reached out to health officials in Oregon, the first state to pass the Death with Dignity Act in 1997. Last year, 218 people in Oregon received prescriptions for lethal medications under the act; 130 ingested the medication, while 44 did not and later died from other causes. It was unclear whether the remaining 44 had ingested the medication. Based on the fact that Oregon has nearly three times Hawaii’s population, Kim expected the number of people using the law in Hawaii to be even lower.
“We don’t think it’ll be hundreds of people at our doorstep,” said Kim, adding that he was aware of three or four people who planned to show up the first week of January to request prescriptions.
Kim didn’t take a position on the law but said there were safeguards that made it unique from other states. For example, Hawaii is the only state that requires a mental health evaluation, making it a total of three health providers who must sign off on the request. He said the process of requesting a prescription is purposely “burdensome and driven by paperwork” to prevent people from abusing the law.
However, Kim was frank when it came to questions of what the law looks like in practice.
While people are required to turn in or lawfully dispose of unused pills, Kim said it’s not clear what that actually means. He added that some ideas include having hospice staff or other medical providers asking the family members to hand over the medication once the person has passed away.
But there’s no way to enforce that, and that’s another concern.
“There’s no enforcement in this law,” Kim said. “No one was given legal authority. This is more of a permissive law. It allows something to happen, and it protects providers who do it. But my department, we don’t want to regulate this. We believe this is a patient provider manner, about as private an issue as you can get.”
Kim said “it gets really messy legislating the practice of medicine,” and that lawmakers would probably be reluctant to create penalties that could fall on unknowing family members. When asked how the state could strike a balance between not legislating medicine and protecting the public should the drugs fall into the wrong hands, Kim said “that’s the active discussion we’re having.”
There’s also the question of who pays for the medication, “because strictly speaking, some of this isn’t really a covered benefit by health insurance plans,” Kim added.
“I’ve spoken with health insurance providers, and they’ve assured us that they’re thinking about it and will have policies and procedures in place, but I have no idea what they’re going to be,” he said.
Nevertheless, Kim said he believed the department had been given enough time to prepare, and he was “pleased with the level of engagement” from the health care industry.
“Like anything new, it might be difficult in the beginning and as we learn to live with this,” Kim said.
Kim added that the two pieces of advice that he “cannot stress enough” is for terminal patients to enroll in hospice and to make sure they prepare their advanced directives and provider orders for life-sustaining treatment (POLST) — the directions for medical providers should the patients be unable to make the decisions themselves.
For patients who plan to take the medication, passing away at hospice would eliminate the need to call first responders. And, in hospice, patients “get the best care that a person with six months to live will get, even if you weren’t a medical-aid-in-dying patient,” Kim said. “Really the value of hospice is that they will take care of everything once you’re gone.”
* Colleen Uechi can be reached at firstname.lastname@example.org.