Compassionate End of life care and

At this point in my life I have been facing some major decisions and most are very difficult. Many have to do with my elderly grandmother that is suffering from the disease known as Alzheimer's. It has destroyed both her mind and her spirit and has left a shell of a being that we hardly recognize. At this moment in time we are in the process of preparing her for hospice. In desperation I have sought out information from my local library, since my other relatives are deceased. I never thought that I would have to make end of life decisions for a grandparent at the age of 35. This book has been a tremendous help for me and has allowed me to ask questions of both the home health nurse and hospice nurse.

It has brought comfort in the idea that I know that my grandmother will be given an opportunity to transition with dignity. I support the concept that elders should be allowed to pass away in their home if possible. If you have a loved one that is entering the hospice program than this book is a must read. There is so much stress involved when it comes to the end of stage life, that it really helps to have some extra advice on the side. Death does not have to be scary for either the family or the person transitioning. I highly recommend this book to both caregivers and family members. ( )

I received this book for free as part of LibraryThing's Early Reviewer program; this review is not affected by this fact.

I'm not sure "enjoyed" is a good word for this book, since it's definitely not an easy read - but it is worth reading and I'm glad I did. I appreciated the use of different families' stories, although some were heartbreaking and really hit home, having experienced the death of my grandfather-in-law in a less than ideal way. The information on the origins and original goals of hospice was fascinating, and led me to search out other information (there's a fascinating documentary about Bethesda Hospice produced by the BBC that I highly recommend, if you can find it). I've been encouraged to start/continue conversations with my wife, parents, and in-laws about what we really want to happen as time goes on. Not easy, but necessary. ( )

When Smith and Himmel lost their fathers around the same time, one of them had a good experience and one not so much. They decided to do some research on hospice, and attempt to find out just how successful hospice care is. This is a comprehensive look at hospice from four perspectives, first examining the philosophy and history of hospice care. This section is followed by examining hospice from the experience of the patient, and then of the survivors. Finally, the history and role of providers of hospice care is examined. These four sections are told both factually, with resources listed, and illustrated also with personal stories and experiences, which makes for some very interesting reading. You will read stories about marriages that come out of survivor groups, as well as medicare regulations. A LOT of information is packed into this very readable 200 page book. Although I have studied death and dying, it was years ago in college and I wanted an update because my mother is currently dealing with Parkinsons/Lewey-Body and has been in hospice care for five months, in an assisted living facility. When I first became aware of hospice it was mostly a volunteer non-profit service; I had no idea that medicare covers it today.

The most important aspect of hospice philosophy addressed is that the patient gets good palliative care and makes her own choices about how she wants to live the rest of her life. We will all die, but we can make SOME choices, IF we do so early enough, about our deaths. That is do we want to be in a hospital, a hospice setting, or at home. How do we want to utilize pain meds, who do we want as visitors or to care for us physically, and, what kind of life-extending care do we want. These are addressed from the patients' perspective and experience as well as the family's, with hospice workers to clarify choices and options and help smooth family disagreements. Hospice means the end to curative care and the movement to palliative care, which can be difficult to face and for families to reach agreement about.

The survivors are offered extensive support during and after the death of the patient, for a minimum of a year, depending on the program.

The last section of the book, about providers, was very interesting to me. It traces the growth of hospice from the work of individual, usually voluntary workers, to its current state as big corporate business. When one particular hospice worker came to believe that the movement could not survive financially without more support, he first worked to develop rules and regs for the industry, and then pushed for legislation for medicare to cover hospice care. When that passed and it became evident a LARGE amount of money was about to become available, investors and corporations became interested in getting their piece of the hospice pie and companies like VITAS were formed. It is the largest one today (and the one that provides services for my mother). Of course there has also been a field day for the attorneys and more than one lawsuit has been filed against VITAS and other providers.

I found the financial aspects of hospice and medicare to be VERY interesting especially because I recently saw an article in the press about hospice care "draining large sums of money from medicare". After reading this book I don't believe that to be the case. There are many aspects of finances that come into play and are examined by Smith and Hillel, who cite their sources. It appears that hospice care actually costs less than not having hospice care. Interestingly, patients who use hospice early enough actually live longer by 37 days. Medicare is no longer paying for curative treatment and there are typically no more long, painful, expensive and repeated trips to the hospital. This is probably clear to anyone who has ever received a hospital bill. In my mom's case, she was repeatedly falling and every unobserved fall in her facility meant a trip to the ER due to their regulations. She did not need ER treatment and the experience was frustrating to everyone involved, from the responding emergency personnel who were by then on a first name basis with her, to the ER personnel and docs, not to mention my mom who hated it. Now if she falls (several safety measures have been put in place) rather than a 911 call, her facility calls hospice and the nurse comes out and assesses her and she gets to stay at her place. There is a lot more to the financial piece and the story is well told by the authors and makes interesting reading. It is a quick course in how medical care and philosophy become institutionalized. Hospice is considered by many to be the most successful part of the U.S. health care system and many wonder why we can't extend some hospice policies to the rest of the system.

This book was a five star read for me, to my surprise. I also found it hopeful and encouraging. We may not have control over our deaths, but hospice can give us more choices as to how we live out our remaining time.

This review is from an Advanced Reading Copy I received from the publisher. ( )

I think anyone caring for an aged loved one or a loved one who has an illness that will probably result in death should read this book. I did not know much about the hospice movement before reading it, but now, after reading it, I have a whole new understanding and appreciation of this important movement. The authors have presented, with many compelling and interesting stories as well as great, sound research and investigation, a very good primer on what hospice care provides its history and its future. I liked the approach of the authors took throughout the book, as well as the way they brought home the true meaning of the hospice movement and its impact on our society. I was particularly interested in the fact that the movement involves the whole family, not just the patient involved and that the movement advocates palliative care as the only real way to go. I know I would prefer this. This book can hopefully shift attitudes and ideas people have about end of life care for themselves or for loved ones, because I think it is a necessary shift, based on what I am seeing around me. Yes, the basic, overall subject of death can be depressing, but it is one we all must begin to think about sooner or later. Having this book as a reference can definitely help in the decision-making process. I think anyone who wants to explore this subject further, or who wants a basic understanding and/or understanding of what hospice is all about should read this book. In addition, medical professionals and social workers who deal with these issues should definitely read this book, as it can provide great information and fill in any gaps they may have. I received this from Goodreads to read and review. ( )