BERKELEY, California — For the first time, a national conference has taken up the task of offering specialized training in medical aid in dying (MAID).
Organizers of the National Clinicians Conference on Medical Aid in Dying (NCCMAID) did not debate the appropriateness of the practice or focus on policy and ethics but rather sought to train and educate clinicians who are willing to participate.
"The most imperative need is physician education and training," said Lonny Shavelson, MD, board chair of the NCCMAID and founder of Bay Area End of Life Options.
"The law makes no provision for medical training; there is no formal system, and I believe that is one of the major barriers and a shortcoming of the law in every state where it is legal," he told the audience.
Held on February 13–15 on the campus of the University of California, Berkeley, about 300 people participated in the meeting. Medscape Medical News was one of only a handful of press participants and will be reporting what took place in a series of articles.
"No Standard of Care"
MAID is now legal in nine states and Washington, DC, which means that about 1 in 5 (22%) persons in the United States now have the option, if they are terminally ill, of choosing to end their life with the help of a physician.
However, state law provides only a basic blueprint that must be followed. The details are somewhat complex ― it is a multistep process that culminates in the patient's receiving a prescription for a lethal dose of medications.
"The law essentially ends once the prescription is written," said Shavelson. "But for the attending physician to cease following and caring for the patient after the prescription is written is not necessarily good medical practice.
"With aid in dying, there are a lot of differences in practice, and there is no standard of care," he said.
Even writing a prescription for lethal drugs is not straightforward. None of the state laws specify what medications to use; rather, the matter is left entirely to the individual prescriber, who may or may not know what is currently being prescribed or even which of the drugs are available locally.
The neighborhood pharmacy is not likely to have such drugs on hand, Shavelson pointed out.
The result is that only a small minority of physicians participate in aid in dying. Although some opt out because of moral objections, Shavelson believes that for most, the reason is a lack of practice guidelines and any real training, as previously reported by Medscape Medical News.
One of Many Routes
Although his own practice is focused on patients who are considering medical aid in dying, Shavelson told conference attendees: "I do not advocate that they die, but I do advocate for the best end-of-life care for patients who are considering this."
That is the focus of the conference, he emphasized, not just aid in dying but also the care of patients who are considering it. "We are providing care as people die, not just medications," he said.
Shavelson also emphasized that there are many ways to die with dignity. "In death, as in jazz, no one knows the final notes," he said. "I want to remind us all that we are not advocates of medical aid in dying, but we are here to accept the many routes that terminally ill patients have to death."
Today, in many states, medical aid in dying is simply one of those routes, he said.
Confusion Over Laws
Deciphering state law is the first step for any clinician who wants to integrate MAID into their practice, said Thaddeus Pope, JD, PhD, health law professor and bioethicist at the Health Law Institute at Mitchell Hamline School of Law, St. Paul, Minnesota.
The state laws governing MAID were designed to prevent misuse or coercion. The downside is that they can put an undue burden on the patient. The language can also be ambiguous at times, Pope said.
"Law is only one barrier to MAID access ― but a big one," he said.
To qualify for MAID, patients must be aged 18 years or older, they must be terminally ill with fewer than 6 months to live, and they must be capable of making medical decisions. Two physicians must approve the request for MAID.
For all jurisdictions, the "basic" process requires two oral requests with a waiting time of at least 15 days between them and usually a written request using a statutory form, he explained.
The exception is Montana, where a court ruling broadened the state's Rights of the Terminally Ill Act to include MAID. There is no regulatory framework, and physicians are protected from prosecution.
In other states, laws are not uniform, Pope pointed out.
In 1997, Oregon became the first state to legalize MAID. Other states follow Oregon's model, "but they don't do so exactly, and there are variations from state to state," said Pope.
The first variation is in the number of assessments required by law. "Every state requires that there are two assessments made by physicians, and sometimes a third is required, and this can done by a social worker or psychologist," said Pope.
"In fact, the third one usually doesn't happen," he commented. "But in Hawaii, things are a little different."
Hawaii requires three assessments of capacity. "It's not contingent on the assessment or doubt in the minds of the physician, as in other states," he explained. "Every patient always gets a third capacity screening."
The second variation between state laws regards the amount of time between oral requests. Most states require two requests that are 15 days apart. "But things are again different in Hawaii," he said. There, he noted, requests must be 20 days apart.
"It is argued that this constitutes undue burden, as most patients can't wait that long, and the majority either die or lose capacity within that period," he said.
Oregon amended its law in January so as to waive the 15-day wait if death is likely to occur before then. Hawaii has similar bills pending.
What about written requests? This is the third variation in state law. Some states, such as California and Colorado, do not require written requests, whereas other states require a 48-hour wait period between the prescription and the written request. "In some states, this 48-hour wait period and the wait period between the two oral requests can run concurrently," Pope explained, "so it is not sequential.
"However, things are different in Vermont," he pointed out. In that state, the wait periods must be consecutive, not concurrent. "So in Vermont, it is 15 days plus 2 extra days," he said.
The fourth variation in state law pertains to the language describing how the drugs are to be taken. Every state requires that the patient self-administer the medication, but the wording of the laws can differ so as to leave them open to interpretation.
"Some say 'ingest,' some say 'administer,' and some say 'take,' " he explained. "So what does this mean?"
Four states use the word "ingest" to indicate that the drugs must be taken orally, by a gastrointestinal tube, or rectally. "Those are not options for some patients who may have poor absorption, can't swallow, have an obstruction or uncontrolled vomiting," he said. "Some data show there is a significant rate of complications due to regurgitation or difficulty ingesting the drugs."
An attempt was made to change the wording of the law in Oregon from "ingest" to "take." Most states use the broader term. Use of the word "take" would allow the drugs to be administered intravenously. "No one is doing that yet, but the law would permit self-administered IV drugs," he said.
The fifth main variation in state law relates to the physician opting out.
MAID is voluntary, Pope emphasized, and there is "no duty to perform, no duty to participate, and no duty to refer. But you do have to send the medical records, even if you opt out."
In Vermont, however, because of a lawsuit, the physician's duty also includes informing patients about all of their end-of-life care options or at least referring them to a provider who will discuss these.
The final variation ― and this is the factor that some clinicians have been grappling with ― relates to the situation in which a facility refuses to participate.
Pope noted that almost no institutions that are affiliated with a religion participate in MAID, nor do healthcare systems, but what about the individual physicians who work for those facilities?
"The traditional rule is that off the purview of the hospital system, you as an individual physician may participate," he explained. "But that isn't always the case."
There is an ongoing legal case in Colorado involving a physician and Centura Health Corp, a system jointly run by Catholic and Seventh-day Adventist churches. Centura fired Barbara Morris, MD, a geriatrician who had planned to help one of her patients who was terminally ill with cancer and who was eligible to use MAID. Both she and her patient filed a lawsuit, as previously reported by Medscape Medical News.
"Centura violated state law and said no, that employees may not participate even during their own time, which is permitted in Colorado," Pope said. "Centura says it is their right under the first amendment."
In another twist to the case, Centura has filed legal documents asking that the case be elevated to federal court and invoked the First Amendment in defence of their actions.
Centura is not the first healthcare system to forbid its physicians from participating in MAID, and state laws may be vague on the subject, Pope commented.
A survey of 270 California hospitals was conducted 18 months after implementation of the state's End of Life Option Act. It found that 61% of hospitals had a policy forbidding physicians to participate (JAMA Intern Med. 2019;179:985-987).
The study also found that among the 164 hospitals that opted out, 56% allowed physicians to refer patients to another provider and 29% did not provide any guidance.
The Colorado case has not yet been resolved. Pope noted that it could set a precedent.
National Clinicians Conference on Medical Aid in Dying (NCCMAID). February 14–15, 2020.
Medscape Medical News © 2020
Cite this: First Conference on Clinician Training for Medical Aid in Dying - Medscape - Feb 24, 2020.