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A Dearth of Protocols to Address Lawful Physician-Hastened Death

Article In Brief

Although controversial, lawful physician-hastened death is legal in more than nine states. Neurologists in states where the practice is legal say the protocols for the process need to be established and standardized.

More than 20 percent of Americans now live in a state in which physician hastened death (PHD) is legal, but the practice remains controversial among physicians. That worries some neurologists because individuals with neurologic illness are, after people with cancer, the second largest group of patients to consider physician-aid-in-dying, according to Compassion & Choices, an advocacy organization that has summarized data from nine jurisdictions that issue reports about the practice.

The state laws that authorize lawful PHD provide safeguards that protect both physicians and patients, said Benzi M. Kluger, MD, FAAN, professor of neurology at University of Rochester Medical Center, but physicians are often on their own when a patient requests assistance. [See “Response to Lawful Physician Hastened Death” for more on the state laws.]

“There's not really any specific training or requirements for things that physicians must do, and there's a missed opportunity there,” he said. “I think some physicians who are in favor of the law would feel more comfortable being involved if there were protocols that they could follow.”

To that end, Dr. Kluger and two colleagues developed a protocol designed to guide patients and physicians through the process in the neurology department at the University of Colorado School of Medicine, where he worked until last year.

Ambiguity about Process

But protocols aside, some specialists say despite evidence of public support for PHD, there is still ambiguity about what lawful PHD means. A May 2020 Gallup poll found that 74 percent of 1,000 individuals surveyed by telephone answered yes to the question, “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient's life by some painless means if the patient and his or her family request it?”

Patients do not necessarily understand, however, what the process entails, said neuro-oncologist Lynne Taylor, MD, FAAN, co-director of the Alvord Brain Tumor Center at the University of Washington in Seattle.

“I've had many visits where, unfortunately, patients misunderstand this as ‘Can you just give me that pill?’ and don't understand that it's a very complex process,” said Dr. Taylor, who has served on the AAN Ethics, Law, and Humanities Committee and the ethics committee for the American Society of Clinical Oncology.

“We have spent a long time thinking very carefully about this topic,” she said. “We're trying to make the distinction that this is something patients choose to do with their physician's help, but definitely not ever something that physicians do to patients.”

How the Laws Are Implemented

Indeed, there is not clear guidance for physicians on how to address the requests from patients. PHD has been legal in Vermont since 2013, but the process for addressing patient requests has not become standardized, one neuro-oncologist at the University of Vermont Medical Center told Neurology Today.

“Every time a patient comes to me with questions, I almost feel like I'm reinventing the wheel—I have to look everything up again and make sure I'm really comfortable with the policies,” said Alissa A. Thomas, MD.

Vermont's statute makes the paperwork associated with PHD clear, but each physician has to figure out how to implement what the law allows.

“There is a lot of room for improvement in the logistics for how you actually carry this out,” Dr. Thomas said. “There are some things that may be easier to approach if they were standard—very basic things like what combination of drugs do you prescribe and what to do about changes in the availability of drugs.”

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“We have spent a long time thinking very carefully about this topic. Were trying to make the distinction that this is something patients choose to do with their physicians help, but definitely not ever something that physicians do to patients.”—DR. LYNNE TAYLOR

Dr. Thomas and two colleagues at the University of Vermont Larner College of Medicine surveyed neurologists, oncologists, and palliative care specialists—those they assumed would have the most experience with Vermont's Patient Choice and Control at End-of-Life Act—to learn more about their experiences. More than 70 percent supported PHD but 57 percent said they needed more information and resources to counsel a patient. Dr. Thomas believes that the survey findings will lead to more support.

“I was surprised, in a very positive way, by how much feedback we got,” she said. “Several people have reached out with interest about how we can make this more streamlined and standardized in some way within our institution.”

Although the COVID-19 pandemic slowed progress on the process, work has begun to create links to the state law embedded in the medical center's electronic medical record, a checklist of the steps involved in the process, a template for documentation, and a prescribing pathway to help physicians communicate with the pharmacy and have up-to-date information on drug-dosing and drug costs.

“One of the challenges in Vermont is there is only one compounding pharmacy in the state that can actually put the prescription together,” Dr. Thomas said. “So reaching that pharmacist and figuring out how the patient can pick up a prescription takes some work to organize everything.”

At the University of Washington, the process is streamlined by having a single person—the social worker in the Alvord Brain Tumor Center—designated as the expert on the protocol for physician-aid-in-dying.

“She ensures that, if I am the physician seeing the patient, I know exactly what must be covered in the visit and that I know to cover all the essential aspects of the conversation and then complete the check-box template for documentation,” Dr. Taylor said.

Studies have documented that the majority of patients who do pursue lawful PHD are primarily concerned about loss of autonomy and are not influenced by the presence of depression, she said. Although neurologists evaluate patients for depression, a formal psychiatric consultation is not required in Washington state. On the other hand, a neuropalliative care consultation is common, and most patients who choose lawful PHD are supported by a hospice care team at home, Dr. Taylor said.

University of Colorado Protocol

During a fellowship in hospice and palliative medicine with an emphasis in neurologic disease at the University of Colorado School of Medicine, Lauren Treat, MD, undertook a quality improvement project to provide more structure to the neurology department's process for handling aid-in-dying requests.

The project built on two department policies for patients seeking PHD: they must be enrolled in hospice and they must receive neuropalliative care.

“I feel very strongly that palliative care should be involved with these requests because we want to make sure that we're not missing the sources of suffering,” said Dr. Kluger, who worked at the University of Colorado until 2020.

Although state laws in Colorado and elsewhere restrict eligibility to patients with life expectancy of less than six months, hospice enrollment is not required by law. Having a hospice nurse or other medical professional present when the medication is taken is important, Dr. Kluger said, in the unlikely event that the patient regurgitates or has some other problem.

“For everyone who did take it, hospice was present, families told us later that, ‘Things went smoothly, and it went as expected, and we're grateful for that,’” Dr. Kluger said.

Between 2017 and 2019, a total of 17 patients received aid-in-dying prescriptions through the University of Colorado neurology department at the University of Colorado. Dr. Treat said. (Dr. Treat is now a pediatric neurologist at Children's Hospital Colorado; in all states, PHD is prohibited for individuals under age 18.)

In all states where the practice is legal, eligibility is limited to patients who can independently request and self-administer the medication. Colorado's law requires a series of three appointments. Two of those appointments have to be with the prescribing physician with a 15-day mandated waiting period between those two appointments. At each encounter, the physician must assess the patient to confirm that he or she meets the eligibility criteria and confirm that the patient's request is voluntary.

Scheduling even one short-notice appointment with a neurologist is difficult, and two with a 15-day wait in between is even harder.

“With progressive neurologic disease, any delays in waiting for appointments can threaten eligibility due to loss of cognitive and motor abilities,” Dr. Treat said. “I was really distressed by seeing people become ineligible because of system factors that resulted in delays in their ability to get appointments.”

Frequently, neurologists would add on appointments to accommodate those patient requests, exacerbating their already too-busy schedules. That problem was addressed by creating a “placeholder” appointment, designated specifically for aid-in-dying requests, in the clinic's schedule each week. If no request is made, the appointment “thaws” early enough that it can be used for another patient, so no appointment slots are wasted.

The protocol also ensures that a neuropalliative specialist will serve as either the primary physician who prescribes the medicine or as a consulting physician.

“That helps make sure that they are well-palliated, that their request is not coming from uncontrolled pain or other symptoms, or that there are no signs of depression or other things that are clouding their judgment with regard to their request,” Dr. Treat said.

As part of her project, Dr. Treat presented information about the state law, institutional policies, and the departmental process at a faculty meeting. Responses to pre-and post-tests showed that most faculty members moved from “slightly or not at all familiar' with the state law to much greater familiarity after just a brief presentation.

“The importance of just being able to speak openly about this, even if some of them never intend to participate, makes everyone feel more in the loop and prepared to receive these requests from patients,” she said.

Response to Lawful Physician-Hastened Death

Oregon passed the nation's first Death with Dignity law in 1994, and Washington followed with the second such law 14 years later. Since then, however, the pace of adoption has picked up considerably. Seven other states—Vermont, California, Colorado, District of Columbia, Hawaii, New Jersey, and Maine—now have physician-aid-in-dying laws.

Another 12 state legislatures are considering the bills this year. Maryland, Massachusetts, New Mexico, and New York are expected to pass the laws within the next five years, said Thaddeus M. Pope, a law professor at Mitchell Hamline School of Law in St. Paul, MN, who tracks the legal issues surrounding PHD.

All the statutes on the practice are similar in that they all limit eligibility to adults who are terminally ill, are legal state residents, and have decision-making capacity. They differ, however, in important details.

For example, every state requires that an attending physician and a consulting physician must determine that the individual has the capacity to make medical decisions, is acting voluntarily, and has made an informed decision. If either physician is sure that the patient lacks decision-making capacity, eligibility is denied. If either physician is unsure, the patient must be referred for mental health assessment. Hawaii's law differs, however, by mandating a third assessment.

Similarly, all of the laws require that the individual make two oral requests for the event, make one written request, and take the prescription drug themselves. Again, details differ. Hawaii, for example, requires that the oral requests be separated by at least 20 days; all other states set the waiting period at 15 days. Oregon, however, amended its law so that, as of January 1, 2020, a patient who is not expected to survive the waiting period can make the first and second request on the same day.

State laws also differ on the acceptable route of drug administration, how physicians and hospitals can assert conscience-based objections, and whether lawful PHD assessments and counseling can be done through telehealth among other points. Pope expects to see more variation in the laws in the years ahead.

The eligibility requirements for physician-aided dying “requirements and procedural safeguards may impede a patient's access,” he wrote. “In response, state legislatures have begun to craft more flexible rules as they recalibrate the balance between safety and access.”

Indeed, the trend to legalization of these statutes triggered the Academy to engage in an in-depth review of the issue that ultimately led to a change in its official position on PHD.

The original position statement, issued in 1998 when the practice was illegal in all states except Oregon, had stated “vigorous opposition” to its members' participation in physician-assisted suicide (PAS), described as a prescription without clinician administration.”

But in a 2018 article in Neurology, the AAN Ethics, Law and Humanities Committee (ELHC)—a joint committee of the AAN, American Neurological Association (ANA) and the Child Neurology Society (CNS)—explained why it decided to reconsider that position statement.

The ELHC wrote that it recognized that as aid-in-dying laws became more common, the Academy's official opposition and its Code of Professional Conduct, which directs its members to relieve the “suffering” and to “respect the wishes” of dying patients, might make members in states where PHD is legal feel conflicted when patients seek their help in the practice.

It noted, too, that a 2014 AAN-sponsored ELHC survey of Academy members found that more than 70 percent of respondents in states allowing for lawful PHD endorsed it as an “ethically permissible behavior.” More than half reported they would be willing to assist their patients in that way.

After two years of deliberation, the ELHC recommended in 2016 that the Academy's official 1998 position regarding lawful physician-assisted death be retired. In December 2016, the AAN, the AAN Institute, and CNS endorsed the ELHC recommendation to retire that position; the ANA recused itself from making a decision.

Link Up for More Information

• Kluger BM Medical aid in living https://jamanetwork.com/journals/jamaneurology/fullarticle/2769865. JAMA Neurol 2020;77(11):1349–1350.
• Landry KK, Ely J, Thomas AA. Experience and attitudes regarding medical aid in dying, Act 39, among Vermont primary care physicians: A call for more education and Resources https://www.liebertpub.com/doi/full/10.1089/jpm.2019.0192. J Palliative Med 2020:24(1): 5–6.
• Masdeu JC, Aksamit AJ, Carver AC, et al. End of life: Expert care and support, not physician-hastened death https://n.neurology.org/content/93/17/729. Neurology 2019;93(17); 729–734.
    • Pope TM. Medical aid in dying: Key Variations Among U.S. State Laws https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3743855. J Health Life Sci 2020:14 (1):25–59.
      • Russell JA, Epstein LG, Bonnie RH, et al. Lawful physician-hastened death https://n.neurology.org/content/90/9/420. Neurology 2018;90(9):420–422.
      • Russell JA, Epstein LG, Bonnie RH, Conwit R, et al. In defense of the AAN position on lawful physician-hastened death https://n.neurology.org/content/94/15/641. Neurology 2020: 94(15): 641–643.
      • Rabadi LA, LeBlanc M, Bucy T, et al. Trends in medical aid in dying in Oregon and Washington https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2747692. JAMA Netw Open 2019;2(8):e198648.
        • Treat L, Vaughan C, Kluger B. When time is short: Reducing delays for neurology patients seeking medical aid in dying https://n.neurology.org/content/94/15_Supplement/1399. Neurology 2020; 94 (15 Supplement).