This is a piece I wrote, appearing in this week's pulse -- voices from the heart of medicine.
http://pulsevoices.org/index.php/archive/stories/465-go-ask-alice
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CAREGIVERS STORE
Surviving Hospice: A Chaplain's Journey into the Big Business of Dying Plus: How To Find a Trustworthy Hospice
This narrative is an insider’s look into the hijacking of hospice by private equity and professional investors and the subsequent harm to patients, their families, and to the interdisciplinary clinical teams. It was released by a NYC publisher on October 31, 2023. For sale on Amazon.
The author, a hospice chaplain, tells end-of-life stories of her patients who were harmed by financially-motivated policies. This is a book for anyone who is embarking on making a choice about a hospice for their loved one, working chaplains, those in training, and those interested in what dying is like with a hospice who places patients as their primary stakeholders.
Maryclaire's experience working for an owner who sold to a private equity firm helped her to realize that the reputation and viability of hospice is in jeopardy. Her goal is to alert all who love hospice to rid it of professional investors.
— Stacy Juba, author, editor, and award-winning health journalist
"Powerful, beautifully written, and eye-opening, this book spotlights the inner workings of a multi-billion-dollar industry and the effect on patients, families, and hospice staff. The author shares poignant accounts of hospice at its best and worst and the hard-hitting truths she learned on her journey. A must-read for family members exploring hospice care."
— Laura Kukowski, CEO, editor, For-Profit Badger Hospice, LLC
"Maryclaire Torinus speaks with authority, providing this essential handbook for choosing a hospice care team and why that selection really matters."
— Greg Schneider President, HVA, co-author of The Changing Face of Hospice Volunteering in Hospice and Palliative Care
"When I first found out that Maryclaire Torinus was writing this book, I immediately contacted her because in my 25+ years supporting hospice volunteers, I have seen a gradual decline in the quality of care volunteers are permitted to provide the dying and their families. There are a variety of reasons for this that I describe in the Foreward of this book. Maryclaire provides invaluable insights that everyone should know, along with solutions to help others make the right choice in choosing a hospice."
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The Changing Face of Volunteering in Hospice and Palliative Care
HCF Creator & HVA President
Volunteers have a long history of supporting the development and delivery of hospice and palliative care in most countries throughout the world. As hospice and palliative care services anticipate significant increasing and changing demands, it is recognized that volunteers have a vital role to play in supporting the future delivery of services. However, as society changes so too does volunteering.
This multi-author text explores the complex phenomenon of hospice and palliative care volunteering from an international perspective and considers the influence on volunteering of different cultures and constructs. The book also explores the likely impact of changes in hospice and palliative care on volunteers and considers how and why volunteering itself is changing and the subsequent implications for managers, organizations, and policy makers.
This book does not attempt to offer solutions to the many challenges ahead, but rather poses questions that may help to reflect on new possibilities and opportunities.
Review
"The book is well laid out and written in an easy to use manner. It begins with setting the scene of volunteering and the modern context of hospice and palliative care. The book is well referenced and covers a range of topics making for a balanced and thought provoking read." -- Nursing Times
"If you run a palliative care volunteer service, or a palliative care service with a volunteer program, you need to read this book. Not only will it give you an in-depth view of where things are at, but also how things are changing in countries from around the world." -- Roger Woodruff, IAHPC Newsletter
Editors
Ros Scott, Honorary Research Fellow, University of Dundee, UK and Co-chair, EAPC Task Force on Volunteering in Hospice and Palliative Care. She is a researcher and voluntary sector consultant with a background in organisational development, research and the development of volunteering and of palliative care organisations.
Steven Howlett, Deputy Director at Roehampton Business School, London, UK where he teaches undergraduate and post graduate courses in management and ethics. Previously he was Senior Research Fellow at the Institute for Volunteering research where he completed many studies on volunteering.
Steven Howlett, Deputy Director at Roehampton Business School, London, UK where he teaches undergraduate and post graduate courses in management and ethics. Previously he was Senior Research Fellow at the Institute for Volunteering research where he completed many studies on volunteering.
Comments
Unfortunately Ellen Medicare has cracked down on who they qualify for continued hospice care. Unless we see the "signs of decline" for the disease that they are enrolled under, then they often do become "discharged alive". However, on the other hand, hospice is for those with less than 6 months to live and many do become stabilized, and after discharge can live for years before declining again and meet the hospice qualifications again. We need more volunteers in all care facilities. I don't think many of them have Volunteer Programs. If more retired seniors who have the gift of caring and compassion would volunteer just 2 hours a week, just think of all the people who would receive that lovingkindness.
Thanks for your kind words, Janice. Here's some irony: not long after this, Alice became a live discharge, because she had stabilized, though she was still in the nursing home. Was she any less in need of the kind of extra attention and care that hospice provided? I don't think so.
Thank you Ellen, volunteers forget the greatest gift they have IS their presence, their presence of caring and love. In your story you provided that calming, reassuring presence of another who cared! You validated her concerns whether they were reality or not, which is valuable in consoling an individual who lives on a different plane. You left Alice in a better place, a place where someone who cared about another human being connected with her. You made a difference if only for that time you were there.