Medical Aid in Dying: Gaining Attention in America

Abstract

The presenters at the PALTC23 program “Medical Aid in Dying (MAID): Medical, Ethical, and Legal Implications” showed a powerful video about an older couple who decided to take control of their lives and deaths. It presented an honest, poignant, and sometimes difficult-to-watch picture of MAID — why people choose this path and its impact on those around them. This was part of a discussion about a controversial procedure that has been gaining public and legislative support. Alan C. Horowitz, Esq., RN, opened the session by sharing some of the legal issues surrounding MAID. He noted that this procedure is legal in 11 jurisdictions, although the laws may differ slightly. In general, however, there is a waiting period, a residency requirement (except in Oregon), and patient needs to be able to self-administer the drug cocktail. Other prerequisites include the patient must be 18 years old or older and terminally ill with a prognosis of six months or less, have decision-making capacity and be determined to be legally competent, and be a legal resident of the state where the procedure is being performed (except in Oregon). Patients can change their mind at any time before ingesting the drug cocktail. In no state is a physician required to participate in a patient’s wish for medical aid in dying. (Mr. Horowitz has written about the legal, medical, and ethical conundrums related to MAID in an accompanying article in this issue entitled “Whose Life Is It Anyway?”) Karl Steinberg, MD, HMDC, CMD, observed that about 25% of the U.S. population lives someplace where MAID is legal, but two-thirds of people think it should be legal. Those who support MAID say it is an act of compassion that recognizes patient autonomy, alleviates unnecessary suffering, and has already been done without the label of MAID. Those opposed to the procedure say that good palliative care makes it unnecessary, it violates the sanctity of life, and it has the potential to be abused. Some suggest that it violates a physician’s Hippocratic Oath and is inconsistent with the physician’s role as healer. Dr. Steinberg noted that those who choose MAID are likely to be more educated and have greater financial means. “Families may not approve, but they generally respect the decision,” he said. He further observed that over 90% of the people who request this option are in hospice care. However, the hospice can’t participate in the process because they are Medicaid funded, and some organizations have policies against it. There have been more than 8,000 MAID-related prescriptions written since 1997, and 6,378 people have died from ingesting MAID drugs. The majority of these patients had cancer or amyotrophic lateral sclerosis, and the average age is 74. The cost for the cocktail is about $700 if not covered by insurance. No physician is obligated to participate in any aspect of MAID, and some pharmacists may refuse to be involved. However, Dr. Steinberg noted that it generally is considered unethical to refuse to refer a patient, even if you as the physician oppose the notion of MAID. He said, “It’s also not permissible to refuse to transfer a patient’s medical records.” Dr. Steinberg explained that there are many reasons people pursue MAID, including fear of lost independence, unrelieved pain, or other physical symptoms. People also say they want to avoid indignity, leaving a tarnished memory, adding care responsibilities on their family, or undergoing institutionalization. Many say they want to be in control of their dying process. Patricia Bach, PsyD, MS, RN, screened a documentary that featured an actual couple who made the decision to pursue MAID. In Living & Dying: A Love Story (Share Wisdom Network, 2018; 44:54, https://www.youtube.com/watch?v=K7WYimyuvE8), Charlie and Francie, residents of a continuing care retirement community, shared their journey. The couple, in their late 80s and married 66 years, reached a point where they were both frail and had serious terminal illnesses — she had heart disease, and he had Parkinson’s disease. They saw a future dominated by illness, pain, and a growing loss of functioning and independence. The two were very firm in their decision to pursue MAID, and they approached the process with courage and dignity. The interactions with their family made clear that they supported the couple’s decision, as painful as it was for them to accept. The footage of the couple’s last day brought tears to the eyes of some in the audience. Charlie and Francie gathered with their family and exchanged memories, hugs, and kisses. There was even some laughter. At the end, Francie shared her final thoughts: “Well, I do hope it’s a glorious adventure, and that we just get to keep learning.” It can be difficult for physicians and others to accept when patients want to end their life, even when their reasons seem understandable. At the same time, the decision to participate in MAID as a practitioner is a very personal one, and it can present practitioners with ethical and spiritual challenges or concerns that they need to address. Dr. Steinberg said, “We in this room have to go our own way.” Physicians and other members of the interdisciplinary team need to get this topic on their radar and start thinking about how they will respond if a patient requests MAID. Senior contributor Joanne Kaldy is a freelance writer in New Orleans, LA.