Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions

by Karen Whitley Bell

What’s going to happen? How will we manage? There are things I still want to do. I’m afraid…

As death approaches, both patient and family must cope with grief, pain, and seemingly unanswerable questions. It’s a time of challenge, of concerns. But, as hospice nurse Karen Whitley Bell reminds us, it also offers an opportunity to explore and rediscover the fuller, richer meaning of life.

Drawing on her years of experience, Bell has created a comprehensive, insightful guide to every aspect of hospice care and the final stages of life. She discusses the physical, emotional, and spiritual journey a dying person goes through; care-giving during this difficult period; closure, and loss and the lessons it teaches us. In addition to her warm, yet knowledgeable voice, readers get firsthand accounts of experiences in hospice care, making Living at the End of Life accessible, reassuring, and indispensable.

 

Genres: Nonfiction, Death, Health, Grief, Medical

240 pages, Hardcover

First published January 1, 2010

Reviews

[Cali Castellanos · Rating 4 out of 5]

Book addresses both the practical/physical & the spiritual/emotional/philosophical aspects of dying based on the experiences of the author as a hospice nurse. Both are so important to having a "good death."

Ideas I liked:
-Spirituality is how we view ourselves within a broader context.
-Authors observes that people often die the way they lived - if they were happy & peaceful despite their circumstances, they will die that way. Or if they were anxious and clinging, they often die that way.
-People often have certain dreams when they are a few months-days before death.
-Suggestions for meaningful conversations at the end of life.
-Changing language. Instead of "you're going to be fine," and "don't give up, we need you here,"
--> "are there things that worry you?" "we will be here for you," "this must be hard."
-Suggestions for obtaining closure.
-Do a life review to help people see their life in its entirety.
-Emphasizes the importance of choice & dignity in how people die -- give them the information they need to make informed decisions & then let them decide what they want to spend their time & energy on. If they don't want to take their pain meds, OK, but let them know all the pros, cons, and impact on others.
-Conclusion: Discussing "When Breath Becomes Air" & the nurse's own takeaway message: "I, like Kalanithi, direct my goals, hopes, choices to a longer potential future. Is that denial? Maybe. Or maybe it's just living with uncertainty, the unknowable, the best we can. Life after all is a great uncertainty left to us to define how and why we live and what we leave behind. The task at hand is to know the end is coming and still live with meaning and joy. To wake up and feel gratitude every day. As Kalanithi's oncologist observed, you have to figure out what's most important to you. To that I would add, live having said goodbye. To face, really face, our own mortality and that of those we love helps us find our inner truth. The clarity of meaning that alludes us when time is seemingly limitless is brought sharply into focus. In goodbye, we understand what life means and what we value most. Say goodbye, then live."

[Aimee · Rating 4 out of 5]

What to expect when you or a loved one is dying. This book is an excellent resource for people who are dying or have loved ones that are dying. The subject matter includes:

*Common emotions/actions by the terminally ill person
*common emotions/actions by loved ones of the terminally ill person
*Different government support available to people in this situation
*What is provided with hospice services
*many many different resources available
*how to best recieve help from community

This book is excellent in that it gives concrete examples of an actual hospice nurse's experiences with the terminally ill and how each experience can be unique but overall normal (I know that sounds contradictory) and that there is no right or wrong for the people dealing with death. Very compassionate view.

[Randi · Rating 3 out of 5]

This book tries to do too many things for too many people. Who is this meant to soothe? It wants to be for everyone. Where it especially struggles is that you cannot comfort the dying and the loved ones in the same book. I found the stories to be way too fictionalized for me. The dialogue was so perfect and script-like that it actually was off-putting. Life isn't so bow-tie perfect. I found it frustrating. The lists at the end of each chapter were really helpful, and the book was still worth it for that.

[Melissa Lee-Tammeus · Rating 2 out of 5]

I picked up this book at the library because I thought I would learn a little bit more about things I could share in my Developmental Psychology class I teach. As I was reading it, however, I couldn't help but wonder who would really benefit from this book. This is written as a how to book in what to expect from a hospice experience. It answers questions in a very matter of fact way. It tries to be all things to all people and I believe this is where this book goes wrong. You can't talk to a caretaker of someone who is dying, a person who is dying, a reader interested in the dying process, and the person taking care of the bills all in the same matter of fact tone. It sounds good in theory, but in reality, it just doesn't work. The first part of the book tells a few interesting stories about people who have reached that moment of death and what they seem to commonly experience. This was what I was interested in. Another section of the book gives very detailed information on walkers and helping devices with numbers to call and insurance and medicaid information. This was unhelpful to me as it were, right now. Still other parts address the process of hospice in matter of fact terms. In the introduction, the author explains that you may find yourself as a reader skipping around depending on what interests you and I did end up doing this. There is just too much here to know who the audience is really supposed to be. I wouldn't want to read this book if I was dying myself - I could give a crap about the price of a walker at that stage, I imagine. I wouldn't want to read this book if I was a caregiver of someone who is dying - who wants a matter of fact book with very above the surface empathy at a time like that? And as it were, I found myself, someone who wanted to know a little bit more, a bit bored by all the insurance jargon. This book is alright, but my advice? Find ONE audience and stick to it.

[Sharon Hardin · Rating 3 out of 5]

This is a gentle book to help patients and family members be prepared for end-of-life decisions and to answer questions that you might not even think to ask. While it is simplistic in some ways, e.g., almost all stories are comforting and describe peaceful passages, it also has some helpful information presented in a calm, reassuring manner. It also has some good information on hospice services and community resources. I think it's a book that everyone should read before they need it and then it can be referred to when needed.

[Carolyn Strong · Rating 5 out of 5]

This is an excellent book that provides concrete and helpful information for those facing end-of-life concerns for themselves or a family member. It covers what hospice is, the importance of letting the affected person make quality of life choices and all the practical advice on daily caregiving activities. It is a handy reference book that can be read in any sequence or simply picked up to answer a specific question. It is written by a hospice nurse who has a wealth of experience and a wonderful approach to guiding you how to talk about death and dying, a topic that is usually avoided above all in our society.

[Jean Doane · Rating 5 out of 5]

My Care Team at church used the first edition as a resource for how to help parishioners and their families. The author at that time was a hospice nurse in Portland, Oregon and a neighbor of one of our Care Team members. She wrote as though she were sitting at your kitchen table answering your questions about your loved one. I found the book accessible and informative. There is now a second edition, published in 2018. I recommend getting that edition as it contains new information and addresses the fact that hospice professionals have less time to spend with patients and families than they did in 2011, making the book an even more important resource.

[Rosie Shore · Rating 5 out of 5]

Strangely life affirming

The author writes with deep understanding, compassion and intelligence. This book shares people's personal stories and each one touches you deeply. I wish I's read this, many years ago, when my mother was lying, riddled with cancer in a hospice bed. I believe it would have helped me to cope with the process and her subsequent death.
At the same time I found this book quite beautiful. The stories, although sad at times are also strangely uplifting, making you see the true beauty of life and the human spirit. A life changing read.

[Mary · Rating 5 out of 5]

I have read multiple books on Hospice Care and / or end-of-life care and although this contains a lot of repeat information from the other books I read, this added some new, insightful information. So if you've read other books already, it wouldn't be a waste of time to read this book in addition to the other ones.

[Olena Semenova · Rating 5 out of 5]

As someone whose dad's health significantly declined in a matter of 2 weeks, I found comfort in knowing what to expect at the end of life. The author answers our most common questions when it comes to the nearing death of a loved one, and I loved how she answers them through storytelling. I found comfort in knowing how best to accommodate and comfort my dad in his last days.

[Libby · Rating 4 out of 5]

At times I found this book more helpful than hospice itself, especially the chapters about the progression of decline and then the final days/hours. It helped me be prepared, prepare my family & ultimately spend more time with my Dad (especially when his rally hit). A book no-one wants to read, but it was my hospice bible for many months.

[Judy Longo · Rating 5 out of 5]

Excellent resource! Very informative for patients and caregivers

I think this book should be required reading for all new hospice,
Home Health and palliative care personnel whether professional
Or volunteer. It is easy reading and well organized. Besides description of end of life issues and physical changes it provides
contact information for specific resources.

[Nathan Hoyt · Rating 4 out of 5]

Very extensive coverage of many aspects of the end of life. Occasionally seemed to be repeating, but I can see if someone is reading this when dealing with someone near the end of life the reader might be focusing on only some chapters.

[Kirsten · Rating 3 out of 5]

Incredibly informative. Handles the subject factually and with great sensitivity.

[Chrissy DeVore · Rating 4 out of 5]

Very informative

[Betty Harris · Rating 5 out of 5]

Excellent resource for anyone to prepare for good aging practices.despite our societies belief today to extend life at all cost,none of us will get out of it alive .

[Lisa · Rating 4 out of 5]

I am an MSW and currently entering the area of hospice. As a social worker, I had some basic knowledge of the hospice process but felt overwhelmed when starting my research. I decided to first approach the area from the perspective of the patient and family member, rather than a clinician. Therefore, I ordered several books and decided this one would be a good starting point. If was a fantastic choice.

The book is broken down and organized wonderfully. Many families find
themselves already in a crisis situation when faced with the issues of dying and hospice. This book is geared for these patients and families. The book does not have to be read in any particular order which is a nice feature. One could easily read the last chapter and then go back and read the rest of the book. It is very informative book , delivered with the utmost compassion and grace. As a clinician, this book helped me realize what a wonderful, fulfilling career I have embarked on. It was a great first book for me to read but if you have been in the field for several years then you might be left wanting more information on "how to" counsel caregivers, etc. For this reason I gave the book 4 stars. However, if you and/or family member is facing the end of life then I would highly recommend reading this book and I would give it five stars.

[Mae · Rating 4 out of 5]

As a hospice nurse, I LOVE how well thoughts and processes are described and explained here. Florence Nightingale would be so proud with how Karen Whitley Bell, RN teaches others to care for themselves and/or their loved ones in such a holistic way. Anyone who will be dealing with the loss of someone close to them (which means everyone!) should read this book.

[Carol Hahn · Rating 4 out of 5]

I have not read a book quite like this before. I hope that I remember this book if I find myself facing a loved one's death or my own. It offers advice and lots of resources for handling the final journey.

[Lisa · Rating 4 out of 5]

Definitely a good book to help anyone with someone they are caring for.

[Jenny Minogue · Rating 1 out of 5]

tell me something i dont know

[Susan · Rating 5 out of 5]

Recommend for anyone who has a loved one facing the end of life.

[Mary · Rating 3 out of 5]

6/17/14. The lists at the end of each chapter are particularly helpful.