Understanding Patient Autonomy in Medical Aid in Dying
AI-generated Audio Version
Thank you Dr Biasotto for allowing me to speak today about Medical Aid in Dying. I’m going to shift the conversation more towards patient autonomy and choice and provide an overview of medical aid in dying.
In my neurology practice, I see patients every day who are dealing with end of life decisions. My task is to educate them about options. Do they want to be resuscitated if they collapse at home or have a terminal condition? Do they know the difference between lifespan and health span? And maybe most importantly, have they talked to family members about their end of life decisions.
Let me tell you my own story. My wife of 32 years passed away five years ago from ovarian cancer. The disease ravaged her gastrointestinal tract, making it difficult for her to maintain nutrition and, perhaps more critically, absorb the pain medications provided by Hospice. Eventually, she was placed on patient-controlled analgesia (PCA), but as her condition deteriorated, she lost the lucidity needed to manage her pain effectively. She passed away five years ago.
Nancy and I had a solemn agreement not to prolong each other’s lives in the face of a terminal illness. We discussed medical aid in dying, but since it was not legal in our state, she worried about the risks it might pose to my medical license—or worse. Before she died, I made her a promise: I would work to see medical aid-in-dying legislation enacted.
In healthcare, autonomy is a fundamental ethical principle. It means that individuals should have the right to make informed decisions about their own medical care. That includes accepting treatment, refusing treatment, and—when legally available—choosing Medical Aid in Dying.
For many patients, the question isn’t about dying, but rather about how they live their final days. When terminally ill patients request Medical Aid in Dying, they are often seeking control, dignity, and an option that aligns with their personal values. This makes the conversation about patient rights and autonomy, rather than the act of Medical Aid in Dying itself.
Medical Aid in Dying should be viewed as one option among several, including:
- Palliative Care – Managing pain and symptoms to improve comfort.
- Hospice Care – Providing support for terminal patients in their final months.
- Advance Directives – Legal documents ensuring patient wishes are honored, and
- Mental Health Support – Addressing emotional and psychological concerns.
In fact, in places where Medical Aid in Dying is legal, we often see improved palliative care options because more attention is given to end-of-life care as a whole. The goal is not just to legalize Medical Aid in Dying, but to ensure all patients receive compassionate care that aligns with their needs.
The conversation around Medical Aid in Dying is often misconstrued. Supporting patient choice doesn’t mean advocating for Medical Aid in Dying. It means ensuring that individuals can make their own independent decisions without unnecessary barriers or coercion. Hospice care and medical aid in dying are not contradictory. According to Dr. Lonny Shavelson, “dying is a process, not a moment. It varies in time and quality and how it happens.”
Take this comparison: Just as we respect a terminally ill patient’s choice to fight their illness aggressively, we should also respect those who decide that further treatment no longer aligns with their values. This is about providing options, not pushing an agenda.
Some argue that Medical Aid in Dying contradicts the physician’s duty to preserve life. Others worry about a “slippery slope” where Medical Aid in Dying could be misused. These concerns are valid and are carefully addressed through safeguards in House Bill 140. Oregon has allowed Medical Aid in Dying since 1997 and the ‘slippery slope’ has not materialized.
Here are some recent statistics from Oregon. In 2023, 560 people received prescriptions under the Oregon Death with Dignity Act and 364 people died from ingesting prescribed medications. This is out of a total of 42,000 deaths in Oregon, so less than 1% take this option. Most patients died at home (88%) and most were enrolled in hospice (87% — vs 55% in Delaware!) There were no referrals to the Oregon Medical Board for failure to comply with reporting requirements.
The three most frequently reported end-of-life concerns were loss of autonomy (92%), decreasing ability to participate in activities that made life enjoyable (88%), and loss of dignity (64%).
Autonomy means that one person’s moral beliefs should not dictate another person’s medical choices. Legislation allows for doctors to opt out of participating in Medical Aid in Dying.
Medical Ethicist Thaddeus Pope has suggested reviewing recent data and experience with Medical Aid in Dying legislation, looking into issues such as permitting non-physician professionals to engage in Medical Aid in Dying services as provided in Delaware HB140. He also suggests shortening or waiving waiting periods, and removing residency requirements.
So, what’s the takeaway?
This debate is bigger than Medical Aid in Dying itself. It’s about whether patients have the right to make deeply personal choices about their own bodies and medical care.
- Some will choose aggressive treatment until the very end.
- Others may opt for palliative or hospice care.
- And some may choose Medical Aid in Dying if it aligns with their values.
The key is that each of these choices should be available and respected. Supporting patient autonomy means ensuring that everyone can make an informed decision without judgment or unnecessary barriers.
There is a deep deficit in our communication with patients. Many times, a doctor will say ‘there’s nothing more we can do’, which is the last thing you should tell to a terminally ill patient. There is always something we can do to help the dying patient, that’s really the definition of palliative care and continuing hospice care is an important part of the process and not contradictory to medical aid in dying.
Some books to consider:
Medical Aid in Dying: A Guide for Patients and their Supporters, by Lonny Shavelson, originated from the questions, interests and needs of dying patients, their families and supporters, with the goal of demystifying and facilitating the process of medical aid in dying.
The Death Doula’s Guide to Living Fully and Dying Prepared: An Essential Workbook to Help You Reflect Back, Plan Ahead, and Find Peace on Your Journey by Francesca Lynn Arnoldy, is a workbook that guides you to process your life and legacy, create remembrance projects, build connections to vital supporters and draft your wishes and plans for your last chapter of life.
At its core, this conversation isn’t about promoting Medical Aid in Dying—it’s about protecting choice, dignity, and patient rights. When discussing end-of-life care, we must ensure that autonomy remains at the forefront and that all options are available for those who need them.
What are your thoughts? Should patients have more control over their end-of-life decisions?
Thanks for listening.
References:
MAID Data Oregon and California
Oregon Death with Dignity Act (DWDA)
Delaware Online Article on HB140
Hospice Utilization in Oregon and California
National surveys on Medical Aid in Dying
Delaware survey on Medical Aid in Dying
Dr Bob, Brain Mechanic 