Access to Medical Aid in Dying Impeded by Lack of Doctor Participation

by Henry Fersko-Weiss

In the last couple of months, a number of articles in local media have highlighted a major impediment to people accessing medical aid in dying: the inability to find doctors willing to prescribe life-ending medications. For example, in an online New York Daily News article from April 27, the writer, Mara Buchbinder reports: “I have spent six years collecting stories about the experiences of patients and caregivers and health care providers with Vermont’s medical aid-in-dying law in the years following its authorization. One of the key findings is that patients encounter significant barriers in attempting to access medical aid in dying, and many of those obstacles come from the medical system itself.”

According to Dr. Lonny Shavelson, Chair of the American Clinicians Academy on Medical Aid in Dying (referred to as the Academy in this article), the difficulty for dying people to find a physician who will prescribe medication, or even to discuss the process, is the most significant issue affecting access to medical aid in dying. “It is not uncommon for doctors to sound unsupportive or to simply say they won’t do it because they don’t know how, leaving a person to face an exhausting search for a doctor who will prescribe.” Not knowing where to turn, many people simply give up. 

No one is maintaining statistics on how many people might have used medical aid in dying if they hadn’t encountered the unwillingness of doctors to prescribe the necessary medication or provide a referral to a doctor who would—simply because they are unfamiliar with the process and don’t get enough requests to do the necessary research. But according to Dr. Shavelson, the number is probably quite large. “Nobody is gathering good data about people who wanted to go forth but encountered obstacles and gave up,” he says. “It could be ten people or ten-thousand, we just don’t know.” 

The numbers in some states where medical aid in dying is legal are clear indicators that access may be a primary obstacle for people wanting to use that legal right. About 166 people each year on average die from prescriptions for lethal medication in Washington state, which was the second state to approve medical aid in dying in 2008. This is only slightly more than the number of people who die of the flu among the more than 52,000 deaths on average each year in Washington. 

In Vermont, only 70 people have used prescribed medicine to end their lives since the aid-in-dying law went into effect in 2013. Yet the average annual death rate in Vermont is about 6,000. Since 2013 about 48,000 people have died in the state, which means that fewer than 1.5 individuals out of every 1,000 over these 8 years have used medical aid in dying. And in New Jersey, the 11th most populated state in the U.S., where medical aid in dying became law in August 2019, only 45 individuals have utilized it so far.

Even in Oregon, which was the first state to legalize medical aid in dying in 1997, parts of the state have no willing providers within 100 miles of patients seeking end-of-life prescriptions, according to an NPR online article from 2017. This same difficulty has been reported in Washington and Vermont as well.

While some doctors may refuse to help patients on ethical or religious grounds, it appears more likely that their reasons have to do with lack of familiarity—at least among family physicians and internists. Most medical practices don’t have that many patients die each year, so they don’t have the incentive to stay abreast of the latest information on life-ending medications or protocols, points out Dr. Shavelson. “I rarely hear that doctors are religiously or morally opposed; they just don’t have the education and are uncomfortable with a procedure they don’t know.” 

One answer to this issue in access is to educate doctors so they understand the process and become familiar with the medications. This is one of the Academy’s main missions, which grew out of the first National Clinicians Conference on Medical Aid in Dying at the University of California at Berkeley in February of 2020. If a doctor or a nurse wants to get better educated they can find a whole series of offerings on the organization’s website. There a clinician will find educational videos, such as Pharmacology and Physiology of Medical Aid in Dying, Evaluation and Management of Patients at High Risk of Prolonged Death, and Dancing with Prognostic Dilemmas, among others. And, the Academy has waived the fees for all CME/CE credits.

Patients interested in medical aid in dying will also find education on the Academy’s website. There is a step-by-step guide to Completing the Pathway to Aid in Dying along with very thorough iInstructions for the aid-in dying day (the selected date of death). In addition, there is an extremely helpful video enactment showing the process of an aid-in-dying day. 

In September the Academy will be expanding its educational offerings to include a 3-hour training for doulas who want to assist dying patients with medical aid in dying. Two of the three people creating this training come from the INELDA community: Co-founder and past President, Janie Rakow, whose practice, FareWell Doula, is located in Wyckoff, NJ, and Lori Goldwyn of Comings and Goings Doula Service in Point Richmond, CA.  

The Academy has also started a referral service to help people find a physician who will help them in the states where medical aid in dying is legal. Dr. Shavelson says that it is the only national referral system available right now. Through the referral systemDr. Shavelson has heard many stories from people about how difficult it was to find a doctor who would work with them. Sometimes people searched for months before they finally found the Academy. Many more likely gave up. “It isn’t that those people necessarily had a bad death,” says Dr. Shavelson. “They just lost their autonomy and didn’t have the death they wanted.” 

Since the start of the referral service eight months ago, some 200 patients asked for and received help in finding a physician who would evaluate and potentially respond to their request for a life-ending medication. That is 100% of the people who contacted the referral service. 

One of the other accomplishments of the Academy has been to refine the pharmacology involved in providing a lethal prescription. “Up until our work on the medicines, doctors used a number of different approaches to prescribing, some of which showed little understanding of how to help the body shut down quickly,” Dr. Shavelson said. That meant that in some cases it could take days for a patient to die or they might even wake up in the process. 

The Academy moved into a science-based approach that has codified the process. Now the average death using their protocol takes an hour or less, with a peak of five hours. According to Dr. Shavelson the vast majority of doctors are now using the Academy-based protocol. This is an amazing result considering that the organization was born only 14 months ago. Some of their current work focuses on a medication protocol for patients with gastrointestinal tract issues. 

Access to medical aid in dying isn’t only an issue of physician lack of education or discomfort with the process. The 15-day waiting period is a problem because it doesn’t take into account that people can die more quickly than they or their doctor thought. Also, the need to visit doctors in person becomes a barrier for many patients – although the recent increase in telemedicine has helped this greatly.  Hopefully these issues will be addressed as more states approve death with dignity laws in the years ahead.