Some Myths About Medical Aid in Dying: What Have We Learned at the Bedside?

SOME MYTHS ABOUT MEDICAL AID IN DYING:

What have we learned at the bedside?

Lonny Shavelson, MD

When a terminally ill patient ends their life by taking legally prescribed medications to die, typically surrounded by their loving

family—it’s been called everything from “death with dignity” to “a good death” to the accurate legal term “medical aid in dying.” I’ve been at the bedside for more than 200 of these aid-in-dying deaths and have been in awe of the resolve and courage of all concerned. But I’ve become equally aware of the various myths that mark this new aspect of end-of-life care. And the longer we’ve had aid in dying in California (now five years), the more I’ve realized that illuminating the mythology about aid in dying is as important as agreeing to prescribe medications to die.

The Major Myth: Misery vs. Mercy.

Since the earliest discussions and political advocacy to legalize medical aid in dying, advocates have promulgated a false dichotomy between a miserable death and a merciful death. This is politically wise (what legislator doesn’t want to minimize suffering?), but terribly wrong. Hospice and palliative care clinicians provide excellent control of pain and suffering to the vast majority of their dying patients. Do we want to use the fear of a torturous death (misery) as the public face of aid in dying (mercy), or tell the truth that most patients will die just fine with good hospice and palliative care?

Don’t get me wrong: As one of the leading clinicians who has offered the lethal cocktail of aid in dying as an option to people who are close to death, of course I believe in it—when it’s an informed choice.

A patient with leukemia came to me asking for medical aid in dying, fearing a painful death. But patients with leukemia typically die by withering away from the weakness of anemia, not with substantial pain. When I explained this to the patient (why had no one told her this before?), she was relieved and decided to live on and see how her death unfolds, with the option of aid in dying in reserve, just in case. She lived for several months more, pain free, enjoying the time with her family, and died a peaceful and calm death—reassured to know that I would honor her aid-in-dying request at any time, should she decide that’s what she wants.

I want terminally ill patients to choose how they want to die based on information, not fear. And, I fear, the politicians and advocates working in the political minefields of aid in dying are spreading useful political misinformation: That death is a choice between misery and mercy. Surveys have shown that the most common fear of death is that it will be painful. So it would be logical to conclude that end-of-life pain is the most common reason for a patient to request medical aid in dying. But it’s not. In fact, pain is at the bottom of the list. At the top? A decreased ability to enjoy life. It’s as simple as that. But that’s not a strong political message.

The most common reason my patients have asked to go forward and take the medications to die is fatigue. Patients wait and wait, and then they tell me, simply, “Doc, I’m done.” With the excellent pain and symptom control hospices and palliative care now provide, I almost never hear “I’m in so much pain, I’m ready to die.” And if I do, my first action is to focus on pain management. The treatment of a pain crisis is pain control, not a prescription for death. But of course, should the patient—given accurate information—choose the option of the poison potion, I’ll be right at their side as they take the lethal medications.

And terminally ill patients are often working with outdated information. An 89-year-old female with melanoma spread from her skin to her liver asked me for medical aid in dying. “I watched my father die from cancer,” she said, “and it was horrible. I will not die like that.” But her father died in 1948, and medicine has advanced a bit since then—especially palliative medicine, home hospice care, pain management and overall symptom control. My first job, then, was to reassure this patient, to bring her up to date—not to prescribe death. Of course, she might later request aid in dying, which I would provide. But again, fear is not the best motivation for realistic decision making. Yet one of the most common requests I hear from patients is, “I don’t want to die like my parents did.” Well, I say, it is highly likely you won’t.

Myth Two: Medical aid in dying is “Death with Dignity.”

I have forbidden myself from ever using the term death with dignity as a euphemism or synonym for medical aid in dying. Who am I to say what a dignified death is? If a cancer patient decides to live on for every possible minute, even to the point of being on a ventilator in an ICU, do I tell him he’s not having a dignified death (because it’s not what I would want)? Aid-in-dying advocates and clinicians do not have a monopoly on deaths with dignity. Yet let’s see what’s out there: Washington’s aid-in-dying

law is named the Death with Dignity Act. And there’s the Maine Death with Dignity Act. And the political slogan, Death with Dignity: My life, my choice. In the news: Why a Seattle Man Chose Death with Dignity. And on and on. Again, we are playing on fear. When we tell people that aid in dying and death with dignity are one and the same, we’re laying claim to dignity. That claim is, well, undignified.

And the language of death with dignity is confusing. A 96-year-old holocaust survivor with lung cancer was weeks from death. He told his hospice nurse, “I want that death with dignity. I’ve suffered too much in this lifetime.” The nurse reassured him, “Of course we’ll provide a dignified death, that’s what we do.” And she left it at that. Two weeks later, approaching death, he told the nurse, “I’m ready for that dignified death pill you promised.” “Oh,” she said, “now I understand what you meant. It’s too late to set that up, you’re so close to death now you won’t make it through the legal waiting period.” The patient: “You betrayed me!” Words matter, and death with dignity is too confusing to be an aid-in-dying synonym.

Myth Three: Medical Aid in Dying is “A Good Death.”

Chana Bloch, a widely-known poet dying from metastatic sarcoma, told me, “I know exactly how I will die—by medical aid in dying. I'm very aware of trying to create a good death. For me, and for my husband and sons—to show them a good death is possible.” Think of that responsibility. Chana’s death became another of life’s obligations, a self-imposed requirement to have “a good death”—for others, as much as for herself. I’ve heard that a lot from my patients. This strange new good-death obligation is a side effect of the new right to choose how and when you will die. But is taking medications to die the only way to show your family that you are choreographing a “good death,” with only one possible dance called aid in dying?

Has our aid-in-dying propaganda penetrated so deeply that Chana—a sophisticated poet who deeply examined the subtleties that produced her good life—believed there was only one route to a good death? Chana, like most terminal patients considering aid in dying, fought to stay alive as long as she could before choosing a date to take the lethal medications. Then she slowly faded from consciousness, into a good death, no poison potions involved. Which is not to say it would have been wrong had she chosen to take medications to hasten her death. It’s just that we who advocate for the choice of aid in dying have created the illusion that it is the only choice for a good death. It is not.

Lonny Shavelson, MD is chair, American Clinicians Academy on Medical Aid in Dying (acamaid.org).

Major Improvements to the End of Life Option Act

by Judy Epstein | Oct 6, 2021

https://endoflifechoicesca.org/major-improvements-to-theend-of-life-option-act/

End of Life Choices is thrilled to share the long-awaited news that yesterday, October 5, Governor Gavin Newsom signed Senate Bill 380. This new law makes some badly needed adjustments to the existing End of Life Option Act in California, which was signed into law exactly 6 years ago on that very date by then Governor Jerry Brown.

These new provisions will become effective on January 1, 2022. Here is what will be different for anyone seeking Medical Aid in Dying in California in less than three months from now.

The new bill reduces the onerous 15-day waiting period between the required two oral requests, to 48 hours. This is a big change and will help many people access the law who couldn’t previously.

Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites. This will be extremely helpful in guiding people as to where they choose to receive their healthcare, especially if they are very sick or terminally ill and wish to request medical aid in dying. The final attestation form will be completely eliminated. This was a document that the patient was expected to fill out and sign within 48 hours prior to taking aid-in-dying medication.

If a terminally ill patient requests medical aid in dying and their physician does not wish to participate, the physician will be required to tell the patient they will not support them. AND, the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request. The amendment also clarifies that medical aid in dying medication can be taken within a healthcare facility.