Medical Aid in Dying: The Role of Death Doulas
This article originally appeared in the January 2021 National End-of-Life Doula Alliance (NEDA) newsletter. It is reprinted here with their permission.
I had the privilege of speaking during a special NEDA webinar, hosted by my Compassion & Choices colleague Bob Drake. Bob offered a special two-hour session focused on the nuts and bolts of medical aid in dying, a medical practice authorized in nine states and Washington, DC. that allows a terminally ill, mentally capable person with less than six months to live, the option to request a prescription medication they can decide to take to end their suffering.
I was particularly excited to speak before this audience because in addition to being the president and CEO of Compassion & Choices, the oldest and largest national non-profit organization devoted exclusively to improving care at life’s end, I also hold an end-of-life doula professional certificate and believe that doulas have the potential to play a much-needed role in improving end-of-life care in the United States.
Death doulas can play a key role in shifting end-of-life care from a paternalistic to patient-directed system by bringing non-judgmental support to patients and serving as their advocate. This is particularly needed for patients who would like the option of medical aid in dying. All too often, interested and eligible patients are unable to navigate the complicated, multi-step process to access medical aid in dying; too many unfortunately die suffering.
During the two-hour presentation, Bob called upon three courageous people: Wendy Engelmann, Bonnie McKeegan and Tom Whaley, to share their experience of a loved one who sought aid-in-dying medication to relieve their suffering. Their heartbreaking stories highlight the many challenges with trying to use the medical practice and how doulas can support patients. They also showed us how medical aid in dying can allow some who are experiencing their last days of life a compassionate end.
While I will outline a few of the key points made during the session below, the session is rich in content and worth the watch. Please note that you may notice some slight variations in messaging between what was presented during the session, and what I describe below. I was grateful that following the session one of the attendees proactively and courageously offered some observations about ways our language could be more inclusive. Her insights were a gift to the organization and the end-of-life autonomy movement. It has allowed us to fine tune our messaging and better realize our commitment to diversity, equity, and inclusion.
What is medical aid in dying?
Medical aid in dying is a trusted and time-tested medical practice that allows a terminally ill, mentally capable adult with a prognosis of six months or less to live to request from their doctor a prescription for medication they can decide to take to die peacefully in their sleep. Currently, the states of Oregon, Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine, Montana, as well as the District of Columbia, have authorized the compassionate option of medical aid in dying, allowing one in five people to have access.
Why Do People Choose Medical Aid in Dying?
Patients choose medical aid in dying for a variety of reasons and often for more than one reason, including loss of autonomy, impaired quality of life, and loss of dignity, according to a study of Oregon and Washington. These patients are acutely aware that they are facing a terminal illness that will inevitably end their life. The option of medical aid in dying provides them with peace of mind in knowing that they are in control of how much suffering they will endure. Many patients who choose medical aid in dying use the remainder of their valuable time to fulfill life goals, spend quality time with family, and find closure without having to worry about how or when they will die.
Who Supports Medical Aid in Dying
The American public consistently supports medical aid in dying by large majorities as measured by national independent polling outlets such as Gallup (74% support in May 2020). A 2015 Gallup poll also noted that support “has risen nearly 20 points in the last two years and stands at the highest level in more than a decade.” In 2016, LifeWay Research released a survey that included results among racial and ethnic groups. The survey concluded national support for medical aid in dying stood at 67%, even though the questionnaire used the biased term “assisted suicide” to describe medical aid in dying. Among racial groups surveyed, support remains consistently strong, including white Americans (71%), Hispanic Americans (69%), and more than half of Black, non-Hispanic Americans (53%). Data from other racial and ethnic groups were not reported.
Who is Eligible for Medical Aid in Dying?
The U.S. jurisdictions that have authorized medical aid in dying modeled their bills after Oregon’s Death with Dignity Act. They each include the same strict eligibility criteria and practice requirements to ensure the highest standard of care.
To be eligible for medical aid in dying, an individual:
- must be a mentally capable adult,
- must be terminally ill with a life expectancy of six months or less,
- must make the request on their own behalf,
- must be educated by their qualified medical provider on all other end-of-life care options,
- may be allowed to withdraw their request or decide not to use the medication and
- must be able to self-ingest the medication.
It’s important to note that advanced age, disability, and chronic health conditions are not qualifying factors for medical aid in dying.
The Process: How Patients Access an Aid-in-Dying Prescription
The process to request and receive medication for aid in dying is complex and includes many steps. It involves the patient making the request to two doctors, multiple witness signatures, and waiting periods. It takes a dying person several weeks to months to obtain a medical aid-in-dying prescription.
Medical Aid in Dying and Diversity
Currently, public health departments in nine authorized jurisdictions have issued reports regarding the use of medical aid-in-dying laws: Oregon, Washington, Vermont, California, Colorado, Hawai‘i, the District of Columbia, Maine, and New Jersey. Cumulatively, for the past 20+ years, across all jurisdictions, only 4,209 people have taken a prescription to end their suffering. While the practice is used sparingly, data shows that having the option available brings tremendous peace of mind. Likewise, the implementation of medical aid in dying has resulted in better conversations between doctors and patients, improved palliative care training and earlier enrollment into hospice care.
Differences in data collection, reporting, and terminology complicate comparisons across states; however, the combined data suggests that the overwhelming majority (94%) of people who chose to access the law are white. The remaining populations included on state collected reports compromise 2% or less of medical aid in dying users.
Unfortunately, data does not exist to confirm why these disparities exist; however, we are working with experts from underserved communities to better understand and address. Of course, the goal with medical aid in dying is not to increase the number of people who use the option, but rather to make sure that people who would like the option are able to access it. Compassion & Choices is committed to ensuring that all racial and ethnic groups have access to end-of-life options consistent with their values and priorities.
Death doulas can help to fill the necessary void in our healthcare system, supporting patients to access the option of medical aid in dying in a myriad of ways: 1) Become your client’s advocate and help them to navigate the cumbersome process; 2) Prepare the prescription (if personal or professional ethics allow); 3) Help them think about what they want their final days to be like; 4) Sit with them while they take the medication, and provide support to others present. And along the way, if you educate healthcare providers and other allied professionals about why this option is important to patients, you can expand access for others who follow.After going through my death doula certification program and meeting others in the death doula space, I have come to the conclusion that death doulas are extremely special people—accepting, compassionate and caring. We need your hearts walking side by side with patients who want to access medical aid in dying.