Sunday, December 9, 2018

The Death Disrupters

Andy Wright on six people who are changing the way we talk about death and the way we die. A death doula "provides a suite of services that includes getting financial affairs in order, making health-care decisions, even identifying the specific sounds and smells clients want at their deathbeds. Arthur also works with her clients’ families, providing support throughout the dying process and helping them wrap up affairs afterward." The Final Exit Network "provides education and support for competent adults suffering from terminal illness, dementia, or chronic or progressive physical disabilities who choose to end their lives." "Recomposition" is a method of burial, "in which bodies are placed in vessels with materials like straw, wood chips, and alfalfa. Tiny microbes that live in the human body go to work, raising the temperature inside and breaking everything down, including teeth and bones. After a month, the result is a rich topsoil that can be returned to the earth. It’s an accelerated version of a natural process, [founder Katrina] Spade says."

Chaplin David W. Peters says,

"People have very strong opinions about what they want their funeral to be like, and Peters encourages them to pick out the hymns and scripture readings they want performed ahead of time. “It helps people prepare for death,” he says, “if they have a say in what happens to them after they die.”

And Deathlab re-imagines the urban cemetery.

‘I was widowed at 23, young people need to talk about death’

Amy Molloy writes about marrying a man at age 23, knowing he has only weeks to live.

Do you know what to say when a friend’s loved one dies? Have you thought about the day your own parent, partner or best friend may no longer be visible? How would you discuss it, in a way that would be supportive, constructive, and even light-hearted?

If you don’t know the answer, you’re not alone.

A new study from the Royal College of Physicians in the UK has urged medical professionals to improve their bedside manner when it comes to discussing death, after identifying that “timely, honest conversations” about patients’ futures are not happening. However it’s not only doctors who need to become more comfortable with these conversations.

It’s been suggested that millennials are the generation most fearful of death, unlike our grandparents, raised through world wars, who learnt that life can be short. As medicine advances and life expectancy increases, we prefer to think of death as our “future self’s problem”.

But is postponing the inevitable increasing our terror of it?

Amy Molloy in The Amateursguide

New from the BBC: Care

Thursday, December 6, 2018

Sometimes Being Present is the Greatest Gift You Can Give

I really loved this very wise essay by Parker J. Palmer about what to say to support someone who is dealing with health problems or confronting mortality. It's important to suppress the natural human impulse to give advice. We want to be helpful and we want to reassure ourselves more than the person we are trying to comfort that we have some sense of control. Don't. Just listen.

I asked how he’d been feeling recently — he said he’d been feeling afraid. “Do you want to talk about your fear?”, I asked. He talked while I listened and asked a few more questions. When we were done, he told me that some measure of peace had returned. It was a peace that had come from within him, not from anything I’d said. I’d simply helped clear some rubble that blocked his access to his own soul.

Living with Dementia -- Making the Most of the Moment

A woman diagnosed with dementia has made sure that all the legal paperwork has been taken care of, participates in an online support group, and has created a "dementia daze" blog to help others.

A key to prolonging independence, participants told her, is to recognize the triggers that aggravate her symptoms and to adjust her routine to head them off. One strategy: Because noise in a grocery store can cause confusion, Mrs. Scherrer shops in the early morning, when the store is quieter.

Most important, she said, the group taught her she “can still live a meaningful, happy life, at least for now.”

To that end, Mrs. Scherrer, of Oley, Pa., writes a blog that provides advice on living with dementia, and she is a mentor to others with cognitive impairments. As a member of the advisory board of the Dementia Action Alliance, an advocacy group, she speaks at conferences of policymakers and neurologists, suggesting ways they can arrange for better, and more sensitive, care.

Mrs. Scherrer has bad days when she is “crying because I don’t know where I am,” she said, but “I have a passion now, and that passion keeps me going.”

Leading an Active Life With a Diagnosis of Dementia

Saturday, December 1, 2018

A Doctor Needs to Know Who Has End-of-Life Say

“I just want to be clear on who has the final say on life support.”

The words cut neatly through a conversation which has barely moved beyond my perfunctory knock on the door frame of your hospital ward room. They don’t come from you—how could they? Unlike your drawn-out, mumbled monosyllables, they are brittle with impatience, as though they are responding to the folded-up patient list in my back pocket. “Clarify goals of care and resuscitation status,” it says, circled and underlined next to your name, your age, and your incurable disease. It means that I am going to ask for permission to focus on comfort and dignity instead of scans and numbers. I will go beyond asking, and will recommend this approach. The words that are still ringing in the air? They tell me we are going to disagree.

I pause, not because this situation is uncommon but because it is easier to let my gaze linger on details than to face the difficult conversation ahead: The woman sitting silently next to you, playing with a wedding band too large for your chemotherapy-thinned fingers. The scar on your head where, during more hopeful days, your surgeons tried to remove the part of your brain that is now going to kill you. The toy lion nestled next to you, guarding you on behalf of your children who are “too young to visit.” They all scream the unfairness of your presence in this room.

Ashamed at delaying, I turn to your older sister. The spoken words were hers, and she is now defiantly holding my gaze, ready to record my answer in the open notebook in her lap. She knows unfairness intimately, and I am part of a now-familiar pattern. Your surgeons will not operate again. Your oncologists will not try more chemotherapy. Your neurologist will add no more medications for the seizures that will come back and possibly never stop. I do not think that you would benefit from “resuscitation” or “life support.” Unlike the others, however, I can be forced to provide them. The purpose of your sister’s words is to “be clear” that she knows this....I am angry at a health care system that has left you and your family feeling lost, suspicious and defensive. I am angry at a legal system that has tried to solve this problem by giving you, and by extension your family, apparently unlimited power at the end of your life without warning you that it is mostly the power to choose more suffering. It is a toxic combination.

Vlad Dragan I Just Want to Be Clear on Who Has the Final Say on Life Support