Book Description

Review A must read for caregivers, individuals with serious illnesses, their loved ones who care about their care, and elected officials. 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. Healing does not need to equate with cure of disease but rather of a spiritual experience despite the ultimate ending of life. To be a healer requires training just as training is required to do an exam, place a catheter or write a prescription. Physicians are all too often untrained and thus unaware of how to be healers despite their desire and intention to be so. Nurses are better equipped by their training but often are too pulled by bureaucratic requirements to have the time needed to be effective. Still, nurses are at the 'heart of caring' and their efforts are the ones that most often transform end of life care to a healing experience. 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. Rand refers to the studies of physicians who consistently state - contrary to how most physicians actually practice - that they would not want aggressive end of life care but rather a care system more akin to that found in hospice and with good palliative care beforehand. 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 Crisis: Reclaiming RelationshipMedicine and Returning Healthcare Decisions To You And Your Doctor.Praise for Last Comforts: Notes From the Forefront of Late Life Care '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 is ahead in their journey.' -Greg Schneider, Founder, Hospice Volunteer Association, and CEO, Hospice Educators Affirming Life (HEAL) Read more From the Author As the baby boomer generation lurches--sometimes kicking and screaming--into old age, ten thousand of us become eligible for Medicare each day. By 2030, one-fifth of the population will be 65 and older, compared to 13 percent in 2015. The fastest-growing population--the 'oldest old,' 85 and older--will number nine million by 2030, more than double their number in 2015. By 2050, the number of Americans requiring long-term care is expected to more than double from 13 million in 2000 to 27 million. This book chronicles my own journey through this unwelcome territory, beginning with the illnesses and loss of my parents and continuing through more than five years as a hospice volunteer. Though I had initially aimed to write solely about hospice, it soon became clear that there were so many broader, interwoven issues in end-of-life care. I broadened my reporting to cover such issues as medical and nursing education, dementia care, long-term care alternatives, challenges faced by minority, gay, and transgender populations, and public policy. The book grew out of one basic question that kept nagging at me not long after I became a hospice volunteer: Why do people enter into hospice care so late in the course of their illness? So late that they don't have the chance take full advantage of all that hospice offers. So late that there isn't sufficient time to develop the trust, ease and, yes, friendship that can provide great comfort for the ill and their families experiencing what is likely the biggest challenge of their lives. Call it curiosity, call it frustration, call it exercising a reporter's muscles, this question drove me to begin researching the current realities of end-of-life care. I wanted to learn: how can we do this better? I am an optimist by nature. My goal was to look to the pathfinders and innovations in caring for people with advanced and life-limiting illness to learn how the future might be dramatically different for the coming wave of aging baby boomers. The seeds for better end-of-life care have been planted. It is up to us to nurture the seeds and insist on the kinds of changes we'll need. Read more See all Editorial Reviews