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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
thank you, greg. the girls loved the shirts. they both wore them to school the next day. :)
i received my 'hannah's friends' shirt in the mail the other day. i'm going to let margaret and madelaine (hannah's sisters) wear it. they love feeling like celebrities as much as hannah did. i have no doubt that when it comes to what hannah's story wants, where there's a will, there's a way. ;)
We connected with people who were touched by Hannah's story and wanted to be part of the support of children with a life-threatening illness and their families. This morning as I was walking back to my car -- so many people that I had to walk about a half mile -- I came to a traffic light. As I walked up, a woman was standing there with her young daughter. She immediately pointed to the picture of Hannah on my t-shirt and said "I saw your booth when I was walking around and I wanted to know more about Hannah and who she was." I first explained to her briefly about the Hannah's Gift book that you wrote and she immediately said "Can I find the book here locally?" Then she wanted to know if we had a website because she wanted to get involved and support Hannah's Friends. What surprised me was how drawn she was to what we were doing with so little explanation -- she just seem to know intuitively how important our work was.
As I left her, I was overcome by the emotions of how beautiful life is. How we, at the prodding of Carol Clark, the mother of our first HF family we chose to participate in the Human Race for the first time. The connections we made seemed so synchronistic and symbiotic. I am not surprised by these occurrences as I have come to know the perfection in the way the universe seems to work when something is needed.
One example of this today was when some woman came by our booth and said "You should be talking to the people two booths down (Kathy's Camp). They are doing something similar to what you are doing. I had just arrived from the 3K walk with our supporters and my wife mentioned it to me so I went over to their booth. I began a conversation with Kathy's mother and she began to tell me about how the program got started. In a nut-shell this is why Kathy started the organization:
"Kathy and her husband, Marc, quickly learned that, while there were many support resources for cancer patients and even a few for spouses, there was almost nothing for the children of cancer patients. No place to find simple answers to difficult questions. No place to be with other kids who were going through similar experiences. No community to bring a sense of normalcy to their lives."
Indeed, what they were trying to do is the flip side of supporting a terminally-ill child, instead the parent had the illness and the children and the spouse nneded help. I immediately realized that we could help people in their situation as well. Kathy has stage 4 breast cancer that she has been shallenged with for almost 8 years. Today she felt strong enough to run the 10K race but feels time is not on her side. After we spoke for some time, Kathy & Marc agreed that we could work together to help families in their situation as well.
You and Hannah have affected the lives of so many. It will be so beautiful to see her come alive for all of us to meet. On behalf of so many, we thank you and Hannah with the deepest gratitude.