Music and Dying

NY Times Journal of Medicine (December 30, 2015)
Songs of Transition by Jennifer Hollis

"I am a music thanatologist, trained to offer music in a prescriptive way, to create a calm space for dying patients and their families. I focus on the patient’s breath as I play the harp and sing. With this rhythm as my guide, music can echo and reflect the dying process. The patient leads the music vigil with his or her breath, right in the middle of the hum of machines, the trill of cellphones, and the voices and nose-blowing of family. It often feels to me as if the room becomes larger, warmed by music and filled with the courage of families preparing to say goodbye."

Also see: The Hospice Flute. and Death Music.

This is the ultimate low-tech, high-touch intervention.

Book:  Music at the End of Life: Easing the pain and preparing the passage. by Jennifer Hollis (2010)

On Dying Alone in Prison

The United States incarcerates the largest number of people in the world.  Many would not be imprisoned elsewhere.  They are largely disenfranchised people who cannot afford lawyers to plead their cases.  This moving essay addresses the plight of individuals dying in the prison system.

When Dying Alone in Prison Is Too Harsh a Sentence by Rachael Bedard, M.D.

Japanese Death Poems

Although the consciousness of death is, in most cultures, very much a part of life, this is perhaps nowhere more true than in Japan, where the approach of death has given rise to a centuries-old tradition of writing jisei, or the "death poem." Such a poem is often written in the very last moments of the poet's life.

on a journey, ill:
my dream goes wandering
over withered fields   (Basho)

illness lingers on and on
till over Basho’s withered fields,
the moon    (Gimei)

Approaching death Shisui students asked him to write a death poem. Shisui “grasped his brush, painted a circle, cast the brush aside and died”.  This symbol is known as the enso which is prominent in Zen Buddhism and indicates the emptiness of all things.

 

Long Term Care Insurance, Part II

Long-Term Care Insurance Can Be Costly but Effective NY Times, December 26, 2015

“Long-term care insurance isn’t for everybody, but it can be useful for people who are interested in preserving their estate for their heirs and for families determined to provide high-quality home care or a superior nursing home for aging loved ones."

This is a helpful article on a complicated subject.

Also see Long Term Care Insurance Part I.

How Milennials Die

Friend Request (2010)  by Daniela Lamas, M.D.

“In the middle of my intern year, I became Facebook friends with a young man who was dying in the intensive-care unit. An investment banker in his mid-20s, he thought he was healthy until a fluttering in his chest and swollen ankles took him to a doctor. Now he was in the I.C.U. with a rare cardiac condition.  And his laptop. That’s the first thing I noticed the morning a group of us stood outside his room on rounds. He was shocked by his internal defibrillator three times the night before — died, that is, three times before being brought back with jolts of electricity. And this young man with a steroid-swollen face was surfing the Internet.

“Are you on Facebook?” he asked me. “I’ll friend you, and you can see the pictures.”

Ghosts in the Machine

Social Media Has Changed the Way We Mourn

In an essay they contributed to the ‘‘Handbook of Death and Dying,’’ the sociologists Wood and Williamson observe that people in the developed world have managed to banish death from their everyday lives — no small feat. ‘‘In the United States and Western Europe, dying is now primarily a private and often technical affair, hidden behind the closed doors of the hospital, the mortuary and the funeral home,’’ they write.

Proof enough of the change in our culture is that Facebook and other social-­media platforms have introduced procedures for handling profiles after their owners die. Families may decide whether to preserve a loved one’s old accounts; if they do, the accounts become memorials, designated places to lay a digital bouquet.

End of Life Discussions

Though most patients wish to discuss end-of-life (EOL) issues, doctors are reluctant to conduct end-of-life conversations. Little is known about the barriers doctors face in conducting effective EOL conversations with diverse patients. This mixed methods study was undertaken to empirically identify barriers faced by doctors (if any) in conducting effective EOL conversations with diverse patients and to determine if the doctors’ age, gender, ethnicity and medical sub-specialty influenced the barriers reported.

No Easy Talk: A Mixed Methods Study of Doctor ReportedBarriers to Conducting Effective End-of-Life Conversations with DiversePatients is a recent article that addresses this subject.

Long Term Care Insurance: Baffling and Complex

This article in then December 18, 2015 NY Times is a good introduction to this thorny problem.

Long-Term Care Insurance Can Baffle, With Complex Policies and Costs

Insuring for long-term care is a lot like trying to cover the future financial impact of climate change. It’s a universal problem that looms large, is hard to predict and will be costly to mitigate.

Few have prepared for this gathering storm. Private long-term care insurance is available, of course, to help pay for expensive services if you are mentally or physically incapacitated late in life.

Jane Austen's Guide to Alzheimer's

Image from the Times article

Carol Adams writes in her essay in the Sunday, December 20, 2015 New York Times:

I came to Jane Austen’s “Emma” in my 50s.  During a caregiving crisis in my life, I lost count of how many times I read or listened to Austen’s novel. I turned her words over in my mind like a piece of slowly melting hard candy.

“Emma,” which was first published 200 years ago this month, is one huge paean to caregiving, depicting its hardships, demands and frustrations. Recognizing the challenges in Emma’s everyday life, I was no longer bothered by Emma; I felt my heart break for her.

It is amazing how much one can learn from a really great novel.  According to Ms. Adams, “Emma” is a textbook for care givers.  It is now on my list…

See: Jane Austen's Guide to Alzheimer's.

Sermon on ""Grief and Woleness"

Our friend, Bill Zeckhausen, WC '56, recommended a sermon by Tony Fisher, a minister of the United Congregation church, of Greater Naples, Florida entitled "Grief and Woleness.  (November 15, 2015)

It's an eloquent and moving homily that most will value listening to (15 minutes).

Five Wishes

Five Wishes is a United States advance directive created by the non-profit organization Aging with Dignity. It has been described as the "living will with a heart and soul."

The Five Wishes (Online Version)

        1: The Person I Want to Make Care Decisions for Me When I Can't

        2: The Kind of Medical Treatment I Want or Don't Want

        3: How Comfortable I Want to Be

        4: How I Want People to Treat Me

        5: What I Want My Loved Ones to Know

History (About Five Wishes)

Five Wishes was originally introduced in 1996 as a Florida-only document, combining a living will and health care power of attorney in addition to addressing matters of comfort care and spirituality. With help from the American Bar Association's Commission on Law and Aging and leading medical experts, a national version of Five Wishes was introduced in 1998. It was originally distributed with support from a grant by the Robert Wood Johnson Foundation. With assistance from the United Health Foundation, Five Wishes is now available in 27 languages and in Braille.  More than 18 million documents have been distributed by a network of over 35,000 partner organizations worldwide. An online version called Five Wishes Online was introduced in 2011 allowing users to complete the document using an online interface or print out a blank version to complete by hand.

The Stanford Letter Project

"Our goal is to empower all adults to take the initiative to talk to their doctor about what matters most to them at life's end. Our research has shown that while almost all doctors agree that it is important for them to have end-of-life conversations with their patients, most doctors struggle with these conversations. Our research has also shown that patients from all ethnic backgrounds agree that it is important for them to have end of life conversations with their doctors. However, patients do not quite know how to initiate these conversations. 

The Letter Project will help you write a letter to your doctor using a simple template. The template is based on extensive research and is specifically designed to help you voice the key information your doctor needs in order to provide end-of-life care to you that is congruent with your values and wishes. 

Use our letter template, write your letter, print it and discuss it with your family and your doctor. The letter template is available in several languages. Many people have already written their letter. Write your letter now!"

Imagine Quality at End of Life

Katy Butler's memorable book Knocking on Heaven's Door is almost a textbook for care of the failing elderly patient.  From the dust jacket: "Like so many of us, the Buler always assumed her aging parents would experience healthy, active retirements before dying peacefully at home. Then her father suffered a stroke that left him incapable of most activities of daily living. Her mother was thrust into full-time caregiving, and Katy Butler became one of the 24 million Americans who help care for their aging and failing parents.”

Imagine a Medicare ‘Part Q’ for Quality at the End of Life is an article in the NY Times by Katie Butler that appeared by years after the publication of her book.  It begins:

"I spent the last Sunday of my father’s life sitting by his bed on the hospice unit in a small Connecticut hospital. He was dying of pneumonia, once called “the old man’s friend.” There was a nondenominational chapel down the hall, and a sheet cake in the kitchen. His hand was warm. Reassured by the quiet presence of the hospice nurses and feeling the mysterious quickening of life through his veins, I gave over to being his daughter and letting him be my father one last time."

Imagining Medicare Part Q

This is an extraordinary opinion piece:

Imagine a Medicare ‘Part Q’ for Quality at the End of Life

By Katy Butler December 9, 2015 New York Times

(Katy Butler is the author of “Knocking on Heaven’s Door: The Path to a Better Way of Death” and the administrator of the Slow Medicine group on Facebook.)

The article is on the 2016 Class syllabus. 

Here are some references:

Katy Butler: Knocking on Heaven’s Door: The Path to a Better Way of Death. Scribner; Reprint edition (June 10, 2014) 
Notes on Knocking on Heaven's Door  .

Muriel Gillick (Interview): Caring for the frail, demented and dying. (Prolonging life at the expense of its quality can rob elderly people of peaceful, meaningful years.)  http://kohd-wc.blogspot.com/search/label/Gillick

Amy Berman.  The Niagara Falls Trajectory . https://nihrecord.nih.gov/newsletters/2012/09_14_2012/story3.htm

Veterans Association Home Based Primary Care Program.

http://www.va.gov/geriatrics/guide/longtermcare/home_based_primary_care.asp

Katy Butler’s Slow Medicine Public Face Book Group

https://www.facebook.com/groups/108731512508516/?fref=nf

An Interview with Marion Gillick

Caring for the frail, demented and dying.

Prolonging life at the expense of its quality can rob elderly people of peaceful, meaningful years, Muriel Gillick tells Les Olson.

23 weeks 6 days

This is a moving NPR piece.
"When Kelley Benham and her husband Tom French finally got pregnant, after many attempts and a good deal of technological help, everything was perfect. Until it wasn't. Their story raises questions that, until recently, no parent had to face… and that are still nearly impossible to answer.

This hour, we spend the entire episode on the story of Kelley and Tom, whose daughter was born at 23 weeks and 6 days, roughly halfway to full term. Their story contains an entire universe of questions about the lines between life and death, reflex and will, and the confusing tug of war between two basic moral touchstones: doing no harm...and doing everything in our power to help. Kelley has written about her experience in a brilliant series of articles in the Tampa Bay Times. And when you're done listening to the episode, be sure to check out the video below--but be warned, it does contain spoilers."

See: 23 weeks 6 days.
Embedded Video.