The Threshold: A Hospice Nurse's Encounters

by Larissa MacFarquhar

The New Yorker, July 11 & 18, 2016

The Threshold is a longish and moving piece follows a hospice nurse on her rounds in Brooklyn.  It is worth a close reading.  Excerpts follow:

The first modern hospice was founded in 1967, in London, by Cicely Saunders, who was both a doctor and a social worker: she wanted to offer homelike care that aimed to provide comfort and serenity rather than to prolong life.  Today roughly twice as many people in America die in hospice as die in hospital.

Hospice believes in caring not only for the patient but also for the family, and tries to address psychological and spiritual needs as well as physical ones.

Whenever Heather entered a patient’s home for the first time, she knew that she was walking into a long, long, complicated story that she understood nothing about, a story that was just then reaching its final crisis.  She wanted to care for her patients in a personal way, rather than racing from one task to another, one limb to the next—inserting an I.V. here, drawing blood there, scarcely noticing whose vein she was puncturing or whose arm she was holding.  She came to understand that touching itself was important, whether it healed or not; she had not realized this before she became a nurse.

Ars Moriendi in the 21st Century

Dr. Katherine McKenzie, an internist at Yale, describes how she and her family allowed her father to experience “a good death” based on an older philosophy called the “Art of Dying.  See “A Modern Ars Moriendi” (New England Journal of Medicine, June 2, 2016)

Levels of Life by Julian Barnes (2013)

On the most important level this a meditation on Barnes’ grief.  The chapter,

‘The Loss of Depth’, which comprises around half of the book’s length, is Barnes’ examination of his grief after the death of his wife, Pat Kavanagh.  It is candid to the point that when he moots the idea of suicide he reveals his preferred method (‘a hot bath, a glass of wine next to the taps, and an exceptionally sharp Japanese carving knife').

In ‘The Loss of Depth’ the love story is entwined in the narrative of grieving rather than parenthetically set aside, and entanglement this is the heart of the book.  There are many books in this genre, some on this blog.

Korean Funerary Portraits

There’s who you are, who you think you are and how you want to be remembered. For Koreans, funerary portraits, which honor the dead at funerals, symbolize all three.

This NY Times article sensitively addresses these portraits and gives a bit of background.  It also has a gallery of 20 such portraits.

Agnes Hwang, age 66, (by Juliana Sohn)

Shik Ja Hong, age 72. (by Juliana Sohn)

 

 

Coloring Your Way Through Grief

Deborah S. Derman, a professional grief counselor has suffered more than her fair share of grief. “The field of grief counseling sort of found me,” she said, “because I had such a long history of loss.”

Now, Dr. Derman has produced an intriguing new tool – an adult coloring book intended to help others “get through tough times.” Called “Colors of Loss and Healing,” the book consists of 35 pages of lavish illustrations to color, each relating to a word or phrase, like “one day at a time,” “bitter and sweet” and “resilience,” meant to evoke thoughts and feelings that can help to promote healing.

The book is meant to help people with losses of every kind, including illness, divorce, financial ruin, post-addiction — anything that might force people to redefine their identity.

Read Jane Broody’s excellent article in the March 17, 2016 NY Times: “Coloring Your Way Though Grief.”

Old Age: A Beginner's Guide (2016)

by Michael Kinsley

Shay Bintliff's Review on the Pathography Blog.

In Gratitude (2016)

by Jenny Diski

“In Gratitude,” is a different kind of cancer memoir, and an almost entirely platitude-free one; which is to say, it’s a book that pushes in five or six directions at once.

In part, it’s about her treatment and her onrushing frailties, and this material is plain-spoken, harrowing and invariably moving. It’s also the story of Ms. Diski’s youth and young adulthood, when she suffered from depression and withdrawal and was in and out of psychiatric hospitals, “rattling from bin to bin,” as she puts it.

To be published, May 117, 2016.

Improving End of Life Care

End of life care still not living up to public and doctors’expectations.

BMJ, April 18, 2016

Murray SA, Murray IR

To allow people the deaths they want, end of life care must be radically transformed.

The Violet Hour, Great Writers Facing the Inevitable

by Katie Roiphe (2016)

“...in this elegant volume of five case studies, Ms. Roiphe, the gleeful contrarian and culture critic has set out to show us how some of her favorite writers faced their last days.  They are Freud, Susan Sontag, John Updike, Dylan Thomas and Maurice Sendak. Her epilogue is a conversation with James Salter, who, though not ill at the time of their discussion, died in June 2016.”

NY Times Review in the March 10, 2016

Palliative Care

In Palliative Care, Comfort Is the Top Priority

by Paula Span, NY Times, February 12, 2016

This is an important article that serves as a great introduction to Palliative Care.  What follows are some quote.

Palliative care, focuses on relieving the discomfort and distress of serious illness, and it differs from hospice.  Many patients and families know little about palliative care; it only became an approved medical specialty in 2007.

Unlike hospice, palliative care patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.  Like hospice, however, it focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.  In spite of this, palliative care remains underused.

References:

1. New Frontiers in Outpatient Palliative Care for Patients With Cancer.

Rabow MW.  Cancer Control. 2015 Oct;22(4):465-74.  Free Full Text

2. Implementation of an Interdisciplinary, Team-Based Complex Care Support Health Care Model at an Academic Medical Center: Impact on Health Care Utilization and Quality of Life.  Ritchie C.  PLoS One. 2016 Feb 12;11(2):e0148096  Full Free Text.

Not Death, a System Failure

Her mother  “had four months in the I.C.U., endless and pointless and painful procedures, and final days full of fear and despair. Why is this medicine’s default death for so many people?”

See: Not Just a Death, a System Failure

By Barbara Moran NY Times February 8, 2016

On the Dreams of the Dying

by Jan Hoffman. NY Times, February 2, 2016

This is a thought-provoking article.  It’s a bit long, but worth slogging through.

A team of clinicians and researchers at Hospice Buffalo are seeking to demystify end of life dreams and understand their role and importance in supporting “a good death” — for the patient and the bereaved.  They are studying people on a journey towards death, not people who just missed it.

¶A 76-year-old patient said he dreamed of his mother, who died when he was a child. He could smell her perfume and hear her soothing voice saying, “I love you.”

“We should be opening the door with our questions, but not forcing patients through it,” Dr. Timothy Quill said. “Our job is witnessing, exploring and lessening their loneliness. If it’s benign and rich with content, let it go. But if it brings up serious old wounds, get real help — a psychologist, a chaplain — because in this area, we physicians don’t know what we’re doing. ”

“The huge challenge of this work is to help patients feel more normal and less alone during this unusual experience of dying,” he said. “The more we can articulate that people do have vivid dreams and visions, the more we can be helpful.”

Image from Times article

When I Die

An end-of-life doctor faces his own end-of-life from a glioblastoma.

When I Die.

Peter Rasmussen was always able to identify with his patients, particularly in their final moments. But he saw himself especially in a small, businesslike woman with leukemia who came to him in the spring of 2007, not long before he retired. Alice was in her late fifties and lived in a sparsely furnished farmhouse outside Salem, Oregon, where Rasmussen practiced medical oncology. Like him, she was stubborn and practical and independent. She was not the sort of patient who denied what was happening to her or who scrambled after any possibility of a cure, no matter what the cost. As Rasmussen saw it, “She had long ago thought about what was important and valuable to her, and she applied that to the fact that she now had acute leukemia.”

This is an excellent article in the January 2016 Harper's Magazine.  It was sent to us by Kathy McKnight.

Dr. Rasmussen and family members

Grim Reaper Cartoon

(Nre Yorker, Feb. 1, 2016)

Where are All the Geriatricians?

This is an excellent article in the Tuesday, January 26, 2016 NY Times Health section.

Excerpts:

Geriatrics is one of the few medical specialties in the United States that is contracting even as the need increases, ranking at the bottom of the list of specialties that internal medicine residents choose to pursue.

Geriatrics is among the lowest-paying specialties in medicine. In 2014, the median yearly salary of a geriatrician in private practice was $220,000, less than half a cardiologist’s income. Although geriatrics requires an extra year or two of training beyond that of a general internist, the salary for geriatricians is nearly $20,000 less.

Young physicians in training find it difficult to muster interest in the slow grind of caring for older patients, and days filled with discussions about medication management, insomnia, memory loss and Meals on Wheels deliveries.

Palliative Care in Kerala

The Indian state of Kerala has a remarkable palliative care program.  It is an example of what can be done with little money and unl9imited compassion.  Volunteers are the linchpin in Kerala’s palliative care system — one that was singled out as “a beacon of hope" in The Economist’s “Quality of Death” study in 2010. Kerala’s achievement is especially significant at a time when richer Indian states and wealthy countries like the United States are struggling with the same challenge: How can health systems offer the possibility of a dignified death to everyone?

Full NY Times article: In India, Dispensers of Balm Travelto Death’s Door

by Ankita Rao January 12, 2016

Volunteer and Patient in Kerala

Assisted Suicide Belgique

“In Belgium, euthanasia is embraced as an emblem of enlightenment and progress, a sign that the country has extricated itself from its Catholic, patriarchal roots.

Belgium was the second country in the world, after the Netherlands, to decriminalize euthanasia; it was followed by Luxembourg, in 2009, and, this year, by Canada and Colombia. Switzerland has allowed assisted suicide since 1942. The United States Supreme Court has recognized that citizens have legitimate concerns about prolonged deaths in institutional settings, but in 1997 it ruled that death is not a constitutionally protected right, leaving questions about assisted suicide to be resolved by each state. Within months of the ruling, Oregon passed a law that allows doctors to prescribe lethal drugs for patients who have less than six months to live. In 2008, Washington adopted a similar law; Montana decriminalized assisted suicide the year after; and Vermont legalized it in 2013.”

A New Yorker article, The Death Treatment, explores and discusses the Belgian experience.  Ananya Mayukha alerted us to an Economist video, 24 and Ready to Die, focusing on Assisted Suicide Belgique. At 22 minutes, it is well-worth watching.

24 yo woman subject of Economist film

Thanatology Class 2016

A Very Ungrateful Old Lady

Sheila Solomon Klass was the mother of the pediatrician Perri Klass.  In her essay in the NY Times (11/8/2013) she wrote: 

"I am a legally blind octogenarian. I have wonderful adult children who often help me, but I can never accept their help gracefully.

It is a terrible thing to be a burden. They say I am not, but I know better. Perhaps many of you have parents like me.

See A Very Ungrateful Old Lady.

Sheila Klass died in March 2014. 

Sheila Klass and daughter, Perri

 

My Letter to the World

THIS is my letter to the world,
That never wrote to me,—
The simple news that Nature told,
With tender majesty.
Her message is committed
To hands I cannot see;
For love of her, sweet countrymen,
Judge tenderly of me!

from Emily Dickenson

Pathographies are illness narratives.  As we consider death and dying, we hear from physicians, social workers, psychologists, ethicists, hospice personnel, lawyers, politicians, economists -- but rarely from the dying themselves. That is why, when an eloquent voice appears, we should pay attention.  See: Goodbye2015….Hello 2016!

January 7, 2016 Take-Home Messages

1.  The KOHD blog is a resource on all things covered this month… and more.

2.  First person narratives of dying are rare.  When you find them, read them and engage with them.  See: New Year Letter from a Dying Friend.

3.  Katy Butler has made huge contributions to our understanding about being a caregiver for elderly people, especially one’s relatives. Her book, Knocking on Heavens Door is a manual in narrative form. Her occasional essays on the subject are keepers.

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

By Katy Butler December 9, 2015 New York Times

5. Our fee-for-service fragmented medical system is a bad fit for the frail elderly (and many others as well).

6.  Medicare shapes the way we die by funneling us toward a high-tech hospital death.

7.  We should focus on the Niagara Falls Trajectory: “to feel as well as possible for as long as possible, until one quickly goes over the precipice. Quality of life is more important to most of than quantity of days, if they are miserable days.”

8.  Tattooed on my heart:  The practice of medicine is an art not a trade: a calling, not a business; a calling in which your heart will be exercised equally with your head. Often the best part of your work will have nothing to do with powders and potions.  William Osler

New Year's Letter from a Dying Friend

This letter is shared here with the author's permission 

Goodbye 2015….Hello 2016!

I’m not sure how this is going to go, but it’s something I’ve been struggling with for the past 6 months and ‘don’t want to continue. I want the freedom to bring my friends into my realm and have them understand why I haven’t seen or talked to them lately.

Also, it means a lot to me to offer another view of living and dying. Or who knows, this may be the prevalent way and others just haven’t found the need to express it.

I have hesitated to share this news with so many people because I didn’t want them to feel sad, or feel like I’m being overly dramatic. I understand they have all experienced death with a family member or close friend who may have chosen to deal with it privately. I understand as much as anyone could. But as you know, that’s not me.

Here is N.'s full letter. 

(If you want to write a few words to the author, you can do so through David Elpern.)