Study: Cancer and ALS Patients are the Most Frequent Users of Assisted Dying

A new study shows surprising consistency across the jurisdictions that allow medically assisted death. Overall, most people who accessed voluntary assisted dying had cancer (66.5% of cases). Neurological diseases were the second most common (8.1%), followed by heart (6.8%) and lung (4.9%) conditions. We also looked at what proportion of people with each disease accessed voluntary assisted dying versus dying by other means. Even though voluntary assisted dying rates and eligibility criteria vary by location, the rates for specific diseases were surprisingly consistent across regions and time periods. For example, people with amyotrophic lateral sclerosis (ALS) – a rare, progressive, fatal disease that damages the brain and spinal cord – had the highest rate of voluntary assisted dying. People with ALS accessed voluntary assisted dying at a rate nearly seven times higher than people with cancer. Meanwhile, cancer patients were four times more likely to access voluntary assisted dying than those with lung disease, and ten times more likely than those with heart disease. What does this tell us? Cancer and ALS, which appear to be the main reasons people access voluntary assisted dying, have very little in common. But both often cause a more rapid decline in health and a greater perceived loss of dignity than other conditions.

What We Don't Talk About When We Don't Talk about Dying Children

Sarah Wildman writes in the New York Times about her daughter, who died at age 14.

Americans — really, Westerners — are terrified of death. We shy away from it. Death is a problem to solve, not an inevitable part of life. As the grief therapist David Kessler pointed out to me, we once visited the dead in the front parlors of private homes. Now the dead are tucked out of sight, handled by others. A bereaved family is the locus of nightmares rather than the focus of shared support. Nowhere is this more true than with the prospect of a child’s death. Death from illness is seen as aberrant, unusual, terrifying. Death from war, gun violence, abuse is lamentable, awful — separate. Healthy children and teens are largely shielded from the critically ill. Visiting the sick, let alone the dying, is associated with the aged and infirm; a charitable act, but not integrated into our ethos. Clergy members are overburdened. Death in America is a whisper, a shame, an error. Supporting a family through the end of life is delicate. For a child, it is also obscene. In pediatric cancer care, which has an understandable emphasis on cure, advances that have brought families hope can often mean survival rates are downplayed, hard conversations avoided. Death, when it comes, feels like failure. Medical schools rarely insist that students consider the prospect. If doctors aren’t comfortable broaching the subject of death with their patients, the rest of society long ago lost the ability to do so. Ian once quietly mentioned to an old friend that he feared Orli would not survive. She chastised him for giving up hope. He should not say such things. In the time leading up to losing Orli and in the aftermath, we lived on the terrible fault lines between these dynamics. To sit with a family that has experienced, or anticipates, child loss is to know it cannot be made better. And yet there are ways to better how we face it....If a child begins to die, support for both patient and family requires a delicate, coordinated effort between social workers, palliative care experts, oncologists and hospice. Families like ours need both to keep a child comfortable and to brace for worse. Such support is possible. But it takes effort, funding and, perhaps most important, the will to recognize that end-of-life care, and then, inevitably, bereavement care, is essential care in pediatrics. That’s rare. We didn’t find it....I keep coming back to something Wendy Lichtenthal, a lead author of the Lancet paper, told me: Our culture has a profound lack of “grief literacy.”...Everyone, even children, deserves the opportunity to sit with these questions at the end of life. It’s not impossible. But to do so requires us to recognize: It’s not sadness we should fear. It’s regret.

The Doctor Behind the ‘Suicide Pod’ Wants AI to Assist at the End of Life

From Wired Magazine:

The world's first assisted suicide pod wraps around the human body like a space capsule, tilting gently toward the sky. The device is designed to look as if the person inside were embarking on a journey, says its inventor, the Australian right-to-die activist Philip Nitschke. “It gives you the idea you’re saying goodbye to the world.” Last month, the 3D-printed pod was used for the first time. In a forest on the Swiss-German border, an unnamed 64-year-old American woman pressed the pod’s button to release deadly nitrogen gas. She died seven minutes later, estimated the Swiss assisted suicide group The Last Resort, whose president Florian Willet was present at her death and was later detained for “aiding and abetting” the woman’s suicide...With the Sarco pod, Nitschke proposes taking the assessment process out of the hands of medical professionals—whom he calls “gatekeepers”—and eventually delegating the task to machines. “I think a machine could do it better,” he tells WIRED. The Sarco machine has the ability to ask its users three simple questions, says Nitschke: Who are you? Where are you? Do you know if you press this button, you will die? If the person inside the pod responds to the questions with the correct preprogrammed answers, a blue button lights up.

What Dying People Want to Say

James Julian writes about the four things Siddhartha Mukherjee has observed are most often said by people who are dying: “I want to tell you that I love you.” “I want to tell you that I forgive you.” “Would you tell me that you love me?” “Would you give me your forgiveness?”

AI and EOL: Can We Create a "Digital Twin" for End of Life Decisions?

End-of-life decisions can be extremely upsetting for surrogates, the people who have to make those calls on behalf of another person, says David Wendler, a bioethicist at the US National Institutes of Health. Wendler and his colleagues have been working on an idea for something that could make things easier: an artificial-intelligence-based tool that can help surrogates predict what patients themselves would want in any given situation.

Jessica Hamzelou writes in Technology Review about the the possibility of using the medical data, personal messages, and social media posts of a patient who is unable to communicate a decision to help family members understand what the person at the end of life would have wanted.

Around 34% of people in a medical setting are considered to be unable to make decisions about their own care for various reasons. They may be unconscious, for example, or unable to reason or communicate. This figure is higher among older individuals—one study of people over 60 in the US found that 70% of those faced with important decisions about their care lacked the capacity to make those decisions themselves. “It’s not just a lot of decisions—it’s a lot of really important decisions,” says Wendler. “The kinds of decisions that basically decide whether the person is going to live or die in the near future.”

This just underscores the importance of communicating with family when everyone is healthy. While no one can really anticipate what they will or would want, just the experience of discussing it will make everyone feel more comfortable making those decisions when the time comes.

A Wave of Grief

A beautiful meditation on grief from the wonderful Storied Stuff blog. Waves of grief keep passing over me and I wonder how I’ll ever survive. But I’ve had an insight that turns the whole process inside out. That wave is her, coming to be with me, and the pain is me not understanding that I’m feeling her touch me. And when the wave comes, I open my heart.

Giving a Father "A Good Death"

Elizabeth Bernstein talks about planning "a good death" for a loved one. In her case, it included favorite music and just being present. When my dad was dying two years ago, I spent days sitting in bed beside him, listening to Chopin and Adele, reading his favorite Carl Sandburg poetry and reminiscing about our father-daughter sailing and kayaking trips. Although he was no longer conscious, I held his hand, told him I loved him and thanked him for being a fantastic father. He died, surrounded by family, while I was talking to him. I think we gave him a good death. Losing someone we love, even when that death is expected, is one of life’s most dreaded experiences. It can also be one of the most profound and meaningful, say experts in end-of-life care, such as hospice nurses, palliative-care doctors and death doulas. (Yes, they’re a thing.) A game plan will help. It can be difficult—and terrifying—to think or talk about what happens at someone’s deathbed. Taking a practical approach can help you do your best when the time comes. Some advice from those experts: Keep your final communication simple and loving. Take your time saying goodbye. And, above all, be emotionally present....Stop worrying about what comes after, such as the calls and arrangements you need to make. Those thoughts take you away from the present, says David Kessler, a death and grief expert and author of six books on the topic. Make the room as peaceful as possible. “When we create this feeling around the person that fosters deep, deep relaxation, we allow them to let go,” Bazen says. Take the family drama outside. Ditto phone calls. Say what’s in your heart, even if you think they can’t hear you. But keep it simple.

She Was Not Incurably Ill But She Wanted to Die -- And She Did

"In the last months of her life, the only thing that appeared to give her real joy was the hope that she would be ending it." In New York Magazine, Evelyn Jouvenet (a pseudonym) writes about her mother's assisted death. In June, my sister and I had learned, almost by accident, that she was seeking an assisted suicide. I was on the phone with Mom, listening to her complain about an annoying bureaucrat at the New York County Clerk’s Office, when she mentioned it. “I am putting in an application to Pegasos,” she said impassively, “so I was getting some documents for them.” I texted my sister while we were on the phone: “What the fuck? Why didn’t you tell me about Mom applying to die?” Three little dots. “Wait,” My sister wrote back. “What. What is she doing?”... In the last months of her life, the only thing that appeared to give her real joy was the hope that she would be ending it. In the U.S., ten states allow physician-assisted death, which is available only to residents who are terminally ill with no more than six months to live. In Canada, the laws are more expansive, but citizens still need a diagnosis — if not a terminal condition, then an incurable one with intolerable suffering and an advanced state of decline. In Switzerland, where a foreigner can go to receive aid in dying, there are fewer restrictions on who is eligible. Pegasos is one of the only organizations that will help elderly people who have not been diagnosed with a terminal illness but who are tired of life. Its website notes that “old age is rarely kind” and that “for a person to be in the headspace of considering ending their lives, their quality of life must be qualitatively poor.” My mother had pinned her hopes on this “tired of life” catchall. She had a three-pronged rationale, she told us over the phone: The world was going to hell, and she did not want to see more; she did not get joy out of the everyday pleasures of life or her relationships; and she did not want to face the degradations of aging. This is exactly the situation that most horrifies opponents of medically assisted death. How can you be sure this is a rational decision and not the result of clinical depression? This article, heartbreaking from the daughter's perspective, will not reassure them. And yet, her mother's resolve, and her history of being immune to the impact her choices have on those who love her, make it clear that one way or another, she was determined to end her life.

Khin Myint on His Sister's Decision to Die

In Slate, Khin Myint says he accepted his sister's decision to die as her right. But "It took me years more to realize something deeper about how we view human euthanasia." He writes about the difficulty of accepting her decision because she experienced psychotic breaks and so the choice might not meet whatever standards there are for independent, rational judgment. My sister Theda had been bedridden for seven years when she first decided she wanted to die. She was 32 then, and a mysterious chronic illness had diminished her will to live. Though it wasn’t legal in Australia at the time, she wanted to die by euthanasia. Technically, this would classify the death she wished for as a suicide. But ethically—and within the family—we understood it differently. ... When we recognize that mental and physical illnesses are not so cleanly divided, we can also question the usefulness of that “divide” for deciding on someone’s right to die. Should a person experiencing a temporary mental health episode be considered a euthanasia candidate? Everyone would agree the answer is no. Just like someone experiencing a bad case of mononucleosis shouldn’t be given the right to a medically assisted death, nor should someone experiencing an episode of depression. But should someone’s right to die be explicitly about their diagnosis? When someone’s suffering is intolerable and without an end in sight, that should be enough of a reason to consider their right to a peaceful death, on a case-by-case basis. We should listen to people in that situation when they ask for more rights, no matter the cause of their illness, as a cause may not be able to be neatly untangled. ... I wasn’t mad at Theda for ending her life. She had chosen euthanasia after reaching the end of what she could tolerate. I knew that it no longer mattered whether her illness had been in her body or mind. All I knew is that she was no longer suffering.

Poems on Grief

 “I Suffer a Phobia Called Hope” by Maya Abu Al-Hayyat

“Black Snow [I came home]” by Carl Adamshick

“A Great Beauty” by Cyrus Cassells

“Aspen Tree” by Paul Celan

“Greensickness” by Laurel Chen

“I measure every Grief I meet (561)” by Emily Dickinson

“Audience” by Maritza N. Estrada

“Elegy for the Disappeared” by Forrest Gander

“Praise Song” by Hafizah Augustus Geter

“On the Last Day, the Bullet is Asked” by Sadia Hassan

“My Dead Friends” by Marie Howe

“Hail, Mary” by Maria Lisella