Last Comforts: Notes from the Forefront of Late Life Care

by Ellen Rand, Stephen C. Schimpff (Foreword)

Too often, end-of-life care in the U.S. is fragmented, uncoordinated, costly, and unsustainable. But it doesn’t have to be that way. Last Notes from the Forefront of Late-Life Care spotlights many innovations that can make a significant difference as we approach the last chapters of our lives.

“A deeply insightful book that addresses the complex issue of helping individuals who need end-of-life care. Last Comforts presents real life situations and, most importantly, offers solutions, support, and resources.” —Steve Saling, resident, Leonard Florence Center for Living, Chelsea, Massachusetts

“Journalist Ellen Rand embedded herself in the front lines of end-of-life care and became a participant in the quest to transform dying. To anyone perplexed by why so many Americans die badly when so many en­lightened alternatives exist, Last Comforts provides answers and points the way to tangible solutions.

"Rand’s investigative skills and word craft result in a must read book, not only for healthcare and policy wonks, but more importantly, for any adult child bear­ing the weight of parent care. Authoritative and highly readable, Last Comforts is at once sobering and hopeful. This book should be on the desk of every health care and human service ex­ecutive, every medical educator, and every legislator across this country.” —Ira Byock, MD, Founder and Chief Medical Officer. Providence Institute for Human Caring; author of Dying Well and The Best Care Possible

“Determining what has given meaning to one’s life is often a topic of reflection by those approaching the end of their lives. Ellen Rand’s personal experiences illustrate how serving others receiving late life care can teach all of us how to live more fully. In this book, baby boomers get to preview what lies ahead in their life journey.” —Greg Schneider, Founder, Hospice Volunteer Association, and CEO, Hospice Educators Affirming Life (HEAL)

Using the reporter's skill of interviewing, analyzing and explaining, Ellen Rand tells us what does not work today on our path to death and how the "system" can be changed so that we can die with dignity, in comfort and with those we love around us.

She explains why it is time to "tear down the wall" that separates hospice care from palliative care, the wall that separates those who want to continue treating their illness yet would like to die a natural death and the wall that reimburses for all sorts of medical procedures and tests but not for compassionate discussion.

Rand explains why the nursing assistant in a nursing home, ostensibly at the bottom of the professional totem pole, is the key to good compassionate care and why she needs to have the autonomy to be effective. She explains why there is just too much paperwork necessary in hospice care just as there is in all of health care - taking the caregiver's time away from the patient. She describes the lack of training of physicians to engage in meaningful listening conversation about medical care in general and end of life care in particular. And the importance of training in palliative care, empathy, interprofessional collaboration and care coordination.

Importantly, the author understands that for change to occur, it will take the concerted efforts of many, working together. She uses examples of leading politicians who understand what needs to happen but can only make it happen if there is a groundswell of public outcry for change. I am reminded of a phrase from Abraham Lincoln "Public sentiment is everything. With public sentiment, nothing can fail. Without it, nothing can succeed."

-- Stephen C Schimpff, MD Internist, professor, former CEO of the University of Maryland Medical Center and author of Fixing the Primary Care Reclaiming Relationship Medicine and Returning Healthcare Decisions To You And Your Doctor.

Genres: Grief, Health

350 pages, Kindle Edition

Published November 15, 2016

About the author

Ellen Rand has been a journalist for more than 40 years, including five years as a housing columnist for The New York Times. She is a hospice volunteer with Holy Name Medical Center in Bergen County, New Jersey, a member of the Hospice Volunteer Association and the Association of Health Care Journalists. Her essays have appeared in several medical humanities publications, including Pulse—Voices from the Heart of Medicine; KevinMD; and Life Matters Media. She blogs at http://lastcomforts.com and tweets: @EllenRandNJ.

Midwest Book Review has praised this book: "Impressively well written, extraordinarily well organized and presented, as informed and informative as it is thoughtful and thought-provoking, "Last Comforts: Notes from the Forefront of Late-Life Care" is a critically important and highly recommended addition to community, college, and university library Health/Medicine collections. Simply stated, "Last Comforts" is directly recommended for the personal reading lists of all health care givers and hospice staff members, as well as non-specialist general readers with an interest in end-of-life care issues."

Reviews

[Susan Walker · Rating 4 out of 5]

The Author not only takes the viewpoint of the patient but of all the caregivers involved. This is an excellent book on end of life care.

[Patricia Ann · Rating 3 out of 5]

Ellen Rand states that this is a" mosaic of the lessons I've learned ... " She presents case studies , then some insightful answers to more culturally oriented end of life care, and then talks about places that have implemented some of these solutions. I would have edited a great deal of the information given as to credentials, wishes, dreams of the experts she cites and places; it's cumbersome in attempting to get a real focus on some genuinely good ideas and practices. Applause is to be given for her presentation of adding to quality of life, decreasing suffering in that last chapter in the book we've written called "My Journey"... She addresses the horrid issue of palliative VERSUS hospice care ; something that needs to be integrated and funded, not at odds with each other; physicians' attitudes towards death and the dying process; the cultural aspects of end of life issues re Baby Boomers, with LGBTQ (friends as family, having those you love around, staff remaining nonjudgemental) ..She addresses patient "getting to know me", the lack of training for physicians re: listening and talking with the patient , caring for the whole person, having an interdisciplinary approach to the patient, and lastly places that have implemented some solutions to a better quality of life at the end of days.