Customer Reviews

Hospice Care for Patients with Advanced Progressive Dementia (Springer Series on Ethics, Law and Aging)

5 star:		(2)
4 star:		(0)
3 star:		(0)
2 star:		(0)
1 star:		(0)

 

 

This is an excellant resource guide for all individuals involved in long-term care or hospice
I commend the authors for a job well done.

I'm the son of a man entering advanced or third-stage Alzheimer's, where our family is feeling forced into considering nursing home placement. I'm an out-also patient psychotherapist currently with two clients who have parents in similar situations, as well as working with a mother grappling with end-of-life issues around her severely handicapped teen son -- a family I've counselled for over a decade. I'm reviewing this book from these close & immediate perspectives & needs. "Hospice Care" is primarily written for those working in long-term nursing homes, and furthermore it's 12 years old. Why did I give it 5 stars?

Almost all books about palliative care & hospice talk "in general" about "the elderly", and they miss many important, even vital issues of the increasingly murky & emotion-laden decisions facing families with loved-ones moving deeper into Alzheimer's very dark night. Indeed, some of the lines between living & dying become increasingly blurred. Which of course leaves both much more decision-making on family and often much more uncertainty & emotional burden. This book is about Alzheimer's & associated "progressive dementias". Yes, in each chapter, and in some cases much of the chapter seems focused elsewhere, e.g., nursing home administrators. Yet also in each chapter there are most often large sections, and within the "other sections", paragraphs & phrases here & there that are so very relevant, that speak directly to the practical, must-do ethical FELT-challenges which are, for us, so real.

In particular, I found Chapter 7, "Palliative Care for Alzheimer Patients: Implications for Institutions, Caregivers and Families", and Chapter 9, "Advanced Proxy Planning" beautifully presented for me, as family member and as advisor to family members. Palliative care, or care focused not on cure, but on "safety, comfort, quality of life, and [the] patient's dignity" involves, in late-stage Alzheimer's, not only Do Not Resuscitate (DNR) & avoiding aggressive hospital care, but also much more challenging issues around tube-feeding & hydration and antibiotics. Palliative care, however, isn't "non-treatment", "giving up", or simply standing by and passively watching death happen. It addresses the question, "How can we ensure the greatest comfort and dignity for persons facing a progressive and inevitable assault on their selfhood." Palliative care focuses "not only on the patient's medical needs, but also on the person's and the family's psychological, social and spiritual needs." Chapter 7 provides a clear, un-overwhelming discussion of common situations & concerns around Alzheimer's, especially late-stage Alzheimer's, while Chapter 9 provides a model for collaborative decision-making by a multi-disciplinary team of professionals & family. Both give a realistic sense of the process of disease & decision combined with respect for individual circumstances, beliefs & values. Yes, even here there are sections which aren't terribly relevant, and occasional sections where I needed to translate from the perspective of institutional caregivers to that of family. But I found that it helped me to better know that institutional caregiver perspective. This gave me ideas to ask about and a yardstick to measure nursing home programs in general and their professional/family collaborations in particular.

Each chapter is written by one or more professionals - some academics, but most always people who are direct caregivers. Therefore, each author contributes from their areas of best expertise. Among the other areas valuable to me were a deeper understanding of Alzheimer's, itself - its more exact progress, issues around eating, infections, behaviors, quality of life. I found a nice understanding of nursing (as well as paraprofessional) care-giving, which is importantly different from that of physicians & technicians - more high touch than high tech, more person-caring than disease-curing. (This, by the way, fit well with my experience during a multi-month hospitalization of my wife for a traumatic brain injury.) The only chapter that disappointed me was Chapter 6, "The Moral Basis of Limiting Treatment: Hospice Care". It seemed not as clearly perceptive of the issues as well as much more exclusively focused on training institutional professionals.

Again, I'm sure that all readers coming from my perspective would find large sections of "Hospice Care" not directly relevant to them & their circumstances.

But I'm so glad I've read the relevant sections. It's given me a kind of process lifeline, a structure by which my individualities of decision-making, my situation & my clients' situations can be better understood & guided. Not that it makes anything easy. Yet with this lifeline, I found comfort, even relief in facing Alzheimer's harsh realities. I feel less alone & more supported with guidelines as well as more open & able to adjust those guidelines.

Did I sense the book outdated? While I'm not up on the current research & practice, still I suspect the way this book may be out-of-date is that, at the time of writing, Hospice was still in the earlier stages of translating its ideas & approaches from the Cancer Model, where the patient remains able to guide much decision-making, into the vastly less clear maelstrom of end-of-life Alzheimer's & surrogate decision-making.

If you're facing these problems, and you've found whatever "help books" that are ready-to-hand not meeting your needs, and if you have college-level reading skills, I'd recommend this book. Certainly, for me, the guidance & relief was well worth the money & time to read it.

Please note, I first read an article, available for downloading, End-of-life decision making for nursing home residents with dementia: a survey of nursing home social services staff.: An article from: Health and Social Work (See my review.) It's easy to get overwhelmed even reading about this area. I found the first six pages of that article, with its simplicity & clarity, the starting point I was "ready" for. Not too much. And after I read this book, I found another book, Ethical Foundations of Palliative Care for Alzheimer Disease. I have it on order, and I'll try to review it, perhaps revising this review. But in looking at the table of contents, it initially looks more like something to compliment rather than to replace "Hospice Care".