(Dr. Lonny Shavelson has been deeply interested in issues of end-of-life care for more than thirty years. He wrote the 1994 book “A Chosen Death” and was one of five authors of the 1997 proposed Guidelines for Physician-Hastened Death by the Bay Area Network of Ethics Committees. In 2016, when California’s End of Life Option Act legalized medical aid in dying, Dr. Shavelson founded Bay Area End of Life Options, a practice uniquely dedicated to terminally ill patients considering medical aid in dying. In August of 2020, Dr. Shavelson closed his medical practice to new patients and became chair of the newly founded American Clinicians Academy on Medical Aid in Dying. His work with the Academy focuses on innovating and advancing clinical knowledge and best practices, teaching, and consulting. This blog post is an excerpt from Medical Aid in Dying: A Guide for Patients and their Supporters.)
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Is Aid In Dying Right For You?
- There is no typical way in which people die
- Patients want to know how they are likely to die
- Having a “how you die” conversation is essential to making crucial decisions
Encourage your health providers to avoid vague answers. Many patients have told me they’ve thought about aid in dying for years. They’re certain that when they become terminally ill and their quality of life is severely diminished, they’ll take lethal medications to shorten the time and amount of suffering. I always reply, “Well, that was when you were guessing how your death would happen. Now that you’re dying and you know the details, let’s take another look.”
Let’s consider the reasons you might take medications to die, and the reasons you might not.
The How-You-Die Conversation
There is no typical way in which people die, so it’s important you know your own probable path. The manner in which you are likely to die depends on your particular disease, your present condition, and everything from the treatments you’ve had to the people helping you through your final days. I strongly encourage you to have a “how you die” conversation with your end-of-life clinician. This can be your doctor, nurse, social worker, chaplain, or anyone experienced in clinical end-of-life care.
Clinicians sometimes hesitate to initiate these essential how-you-die discussions because they fear they’ll eliminate the hope that you’ll live longer (even though they know, and you know, you’re dying). So it may fall to you, the patient, to bring up the topic. That way, you’ll enter the dying process knowing your own probable path — and your decisions will be well informed.
For example, an elderly patient of mine with leukemia asked for medical aid in dying because she feared intractable pain. But significant pain is not a characteristic of leukemia’s final stages. Far more common is anemia, weakness and, ultimately, a slow fading out of existence. When I told her this, the patient chose gentle comfort measures, and she had the pain-free death she desired. (For those with other illnesses, such as severe cancer that has spread to the bones, pain may be more prominent, although often very treatable.)
From my conversations with dying patients and end-of-life clinicians, I’ve learned that people want to know how they are likely to die — even though they might enter harsh and emotionally troubling terrain during a how-you-die conversation. End-of-life symptoms and experiences vary greatly. Your doctor might tell you about everything from blocked bowels to delirium, bone pain to vomiting. Or, your doctor might explain that you’re likely to experience a gradual, gentle fading away from life, with no severe symptoms at all. Having a sense of these possibilities in advance is essential for you to minimize surprises, make specific requests for end-of-life symptom management, and decide among the various possible paths available to you.
Please encourage your health providers to avoid vague answers like, “Your death will come in the way it comes, when it comes. We can’t predict the future.” Actually, most end-of-life clinicians have a pretty good idea of how your death is likely to occur. They even have a reasonable sense of when (especially as death gets closer). Of course, they cannot predict the precise nature and timing of every event leading to your death, nor the exact moment of your death. But that doesn’t mean that you and they should avoid a detailed conversation about likely scenarios.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
The article about How I Will Die is very timely. My mother asked me how she would die. She was wasting away with cancer in many places but was near the end of her journey. It seemed apparent to me that she would just sleep longer until she just didn’t wake up. I told her that. She was very relieved and died a few days later by sleeping herself away.
According to Gallup public opinion polls since 2013, seven out of ten Americans approve of Medical Aid in Dying.
We should all have the right in every state to legal aid in dying. It’s totally contrary to freedom, not to. It’s held back due to religious incursion on our rights and greed of the pharmaceutical companies and nursing home profits.
Oddly missing from this article: No talk about DECIDING to die using a right-to-die law.
Then, of course, the date of death would be decided in advance.
Very helpful post. I just finished up chemo/surgery/radiation for pancreatic cancer. Hopefully it bought me a few more years. But chances of recurrence are high and from what I read the last times can be really tough with pain, nausea, digestive problems and blockages. If/when I have a recurrence I will be asking my doctor that question. I really wish injections were an option. Sometimes people with pancreatic cancer get to the point where they can’t keep down food so if I want aid in dying I’ll have to make sure I do it before that point.