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.

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.

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

Panel Urges Overhauling Health Care at End of Life

NY Times, September 7, 2014, by Pam Belluck

(The following are quotes from the Times article.)
 

Our health care system is poorly designed to meet the needs of patients near the end of life was the conclusion of a panel set up by the Institute of Medicine.  ““The current system is geared towards doing more, more, more, and that system by definition is not necessarily consistent with what patients want, and is also more costly.”

The panel called for “the elimination of “perverse financial incentives” that encourage expensive hospital procedures when growing numbers of very sick and very old patients want low-tech services like home health care and pain management.

The 507-page report, “Dying in America,” said its recommendations would improve the quality of care and better satisfy more patients and families. It also said the changes would produce significant savings that would help make health care more affordable.

“If you meet their needs, treat their pain, treat their depression, get them some help in the house, your costs plummet,” said Dr. Diane E. Meier, a committee member and the director of the Center to Advance Palliative Care. Fewer patients would end up in emergency rooms getting expensive care they do not want, she said, adding, “It’s a rare example in health policy of doing well by doing good.”

Perhaps, the committee’s most “radical conclusion” was that there should be a more pronounced shift away from fee-for-service medicine, which promotes an emphasis on medical interventions in part by reimbursing doctors based on procedures rather than for talking with patients.

In surveys of doctors about their own end-of-life preferences, “a vast majority want to be at home and as free of pain as possible, and yet that’s not what doctors practice.

“Patients don’t die in the manner they prefer,” Dr. Victor J. Dzau, the Institute of Medicine’s president, said at the briefing. “The time is now for our nation to develop a modernized end-of-life care system.”

Evelyn Lau's Poetry

Evelyn Lau is the poet laureate of Vancouver.  She has a few poems that deal with end of life issues.

Palliative Care Ward,

Lions’ Gate Hospital

In the end you let go so easily
as if your life were a bit of dander
you shook from your sweater and watched sail

into the breeze. For weeks I sat by your hospital bed,
the ferries outside carrying their cargo of light
across the ink harbor as minute
by minute you sank down
towards your death.   Click here to read the full poem.

 

HOSPICE OF THE NORTH SHORE,
DANVERS, MA

Mr. Updike, a long-time resident of Beverly Farm, died of

lung cancer at Hospice of North Shore in Danvers, said his wife, Martha
– The Boston Globe, January 27, 2009
This is the closest I will come

to your last days, peering like a pervert
into your final privacy
on the opposite shore. Here is the hospice,
in New England shades Click here to read the full poem.

Tree upended - Stganley Park 2006

His Last Days

 

You call one Sunday night
to tell me about his last days on earth.
How he made you promise him one more
summer, a garden where the two of you would sit
Over a white tablecloth and a pitcher of cool water. Click here to read the full poem  .

Knocking on Heaven's Door (The Book)

by Katie Butler

This is an honest, sobering look at what awaits so many elderly people and their caregivers, who are often family members.  It is the story of a Medical-Industrial Complex gone wild:  doing things to people for economic gain.  Expensive procedures that have serious unintended consequences are, unfortunately, the rule.  For a variety of reasons, many physicians perform lucrative tests and interventions that do little to improve patients’ well-being.  Death is seen as the ultimate enemy, yet we all will die.  How one dies is important, yet this is not considered often enough.  DJE (Here are my notes from KOHD - The Book.)

Katie Butler with Her Parents

From BookList: “Knocking on Heaven’s Door” is a thoroughly researched and compelling mix of personal narrative and hard-nosed reporting that captures just how flawed care at the end of life has become. My hope is that this book might goad the public into pressuring their elected representatives to further transform health care from its present crisis-driven, reimbursement-driven model to one that truly cares for the patient and the family. And since life is, after all, a fatal illness and none of us are spared, there is an urgent need for us in America to reclaim death from medicine and, whenever possible, enable the ritual of dying at home with family present (and aided by all medicine can offer) so that we are allowed to take our leave from earth with dignity.

From the NY Times Review by Abraham Verghese: “Knocking on Heaven’s Door” is a thoroughly researched and compelling mix of personal narrative and hard-nosed reporting that captures just how flawed care at the end of life has become. My hope is that this book might goad the public into pressuring their elected representatives to further transform health care from its present crisis-driven, reimbursement-driven model to one that truly cares for the patient and the family. And since life is, after all, a fatal illness and none of us are spared, there is an urgent need for us in America to reclaim death from medicine and, whenever possible, enable the ritual of dying at home with family present (and aided by all medicine can offer) so that we are allowed to take our leave from earth with dignity.

To Relieve and To Comfort

"Palliative Care it is meant to ease symptoms and pain, and focus on quality of life for severely ill patients, who may choose between continuing or halting traditional medical treatment."

It has been available for some time, but is under-recognized.  A recent New York Times article, House Calls Are Making a Comeback, is a good introduction to palliative care.  It seems to be a fertile new area for research and now prestigious institutions are vying for prominence in the field.

Read the article.

A book, God's Hotel, by Victoria Sweet, eloquently describes palliative care in action in a San Francisco alms house.  See Pathography Blog.