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.