Category Archives: Books about dying

Important New Book: The Conversation

The Conversation

Another important book about the way we handle end-of-life in America has just been published. The Conversation: A Revolutionary Plan For End-Of-Life Care by Dr. Angelo Volandes presents useful guidance for patients, families and doctors regarding difficult conversations about the best practices for end-of-life treatment.

In the book, Dr. Volandes offers actual sample scripts that illustrate the right ways to address these tough questions.

“Despite billions of dollars in new technologies in America’s finest hospitals,” he writes, “the most important intervention in medicine today happens to be its least technological: timely and comprehensive discussions with patients as they near death.”

Volandes tells stories of several patients and how they chose to handle the approaching end of their lives. Every story is different but each has the common element of a conversation to determine what is really important to the patient.

He is not the first doctor to point out that many in his own profession have shortcomings in communication. He writes: “When it comes to talking with patients about end-of-life care, doctors rarely acknowledge the skill and practice needed to perform one of the hardest ‘procedures’ of all: having The Conversation with patients and families. Unfortunately this short-sightedness results in patients’ lives that end with bad deaths.”

If The Conversation leads patients, families and, especially, doctors to talk more openly about these issues, Dr. Volandes will have scored a major accomplishment. One of the book’s stated goals is to embolden patients to ask questions when doctors do not initiate the conversation. He encourages doctors to become catalysts of change.

We applaud Dr. Volandes for writing this book. Take a moment to view his video which he talks about the book.

For answers to your questions about hospice care in St. Louis, please call Hope Hospice at 314-984-9800.

 

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Being Mortal

beingmortal

Dr. Atul Gawande has written several books and articles about modern medicine. His new book Being Mortal encourages the medical community—and the rest of us—to examine the way we face the end of our lives.

He writes of his own medical training: “I learned about a lot of things in medical school, but mortality wasn’t one of them. Our textbooks had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point.

The way we saw it, and the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.”

He writes about a revelation he had early in his medical career: “Within a few years… I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them.”

A story about a cancer patient who chose a difficult surgery over comfort care ends with Dr. Gawande writing: “What strikes me most is not how bad his decision was but how much we all avoided talking honestly about the choice before him… The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance.

Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need.”

He writes about his daughter’s piano teacher Peg and her terminal illness: “I suggested that Peg try hospice. It’d at least let her get home, I said, and might help her more than she knew.

The hospice team put a hospital bed on the first floor so she wouldn’t have to navigate the stairs, organized a plan for bathing and dressing, adjusted her pain medications until they were right. Her anxieties plummeted as the challenges came under control.”

Dr. Gawande offered this comment regarding end-of-life: “People want to share memories, pass on wisdoms and keepsakes, connect with loved ones, and to make some last contributions to the world. These moments are among life’s most important, for both the dying and those left behind. And the way we in medicine deny people these moments, out of obtuseness and neglect, should be cause for our unending shame.”

One online reviewer said: “This book should be required reading for all physicians.”

Another wrote: “I’ve asked my wife to read the book so that we can discuss the final chapter in our own lives and make better plans on how to preserve the things we value for as long as we can. Making these decisions will force us to answer such questions as when is it time to say “enough is enough” to medical care.”

Being Mortal by Dr. Atul Gawande brings important end of life issues and questions to the table. The fact that they are written by a leading Boston surgeon who also teaches at the Harvard School of Medicine means that these thoughts will reach the eyes and ears of many members of the U.S. and world medical community.

(For questions about hospice care in metro St. Louis, call us at Hope Hospice at 314-984-9800.)

Gail Sheehy on Being a Caregiver

If you find yourself suddenly the caregiver for a parent, a spouse, a partner, a sibling, you may be overwhelmed. Not only are there many new responsibilities, there is much mystery that lies ahead. Where do you go for help? Who can tell you what to do in this new role?

One source of useful guidance is the 2010 book Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy. She is the author of the 1976 book Passages, which helps define several phases of adult life. She now describes herself as “author, journalist, lecturer, advocate for caregivers.”

In Passages in Caregiving, she writes about the episodes in her husband Clay Felker’s slow demise. He died in 2008, seventeen years after his first cancer diagnosis. She writes about things she learned from personal experience, as well as insight she gathered from talking to other caregivers.

In the book, she identifies eight distinct “turnings,” starting with “shock and mobilization” and ending with “the long goodbye.”

Among her tips to caregivers is encouragement to take charge of the situation. She writes to caregivers: “How you handle this crisis will shape how you feel about yourself and almost certainly will change you in ways that follow you to the end of your days.”

She also tells caregivers, “We cannot do it alone. No one can.” She writes: “We need to grow a network of family, friends and veteran caregivers to help us understand what we’re going through and pitch in wherever they can.”

Of hospice care, Sheehy writes: “Caregivers often receive the most cherished benefit of hospice care. They and other family members almost universally express gratitude for being guided and supported through the mysteries of the dying process.”

As we at Hope Hospice tell patients and caregivers, every situation is different. But there are common elements that exist in most end-of-life experiences. Similarly, your caregiving experience will be different from that of Gail Sheehy. But by having walked that path, she is able to share her story (as well as those of other caregivers) in a way that can provide you a better idea of how to proceed.

If you are a caregiver and have questions about hospice care, call us at Hope Hospice at 314-984-9800.

(Passages in Caregiving is available from Amazon in a print edition and e-book. The Kindle version comes with several videos on the topic. It is also available in local libraries.)

Read More About End-of-Life

If you arrived at this page via an internet search, you may seeking information and opinions about hospice. Maybe someone you love has recently been diagnosed with a serious medical condition or has been given a terminal diagnosis.

This site and others can suggest things to be concerned about as your loved one faces the possibility of death. Your hospice team members can offer huge amounts of guidance and counsel. But it’s a good idea to collect as much input regarding death and dying as possible beforehand.

In addition to surfing the net for articles and postings about death, hospice and other end-of-life concerns, look to books. Your local library or bookstore will have relevant books that contain meaningful content from caregivers, hospice personnel, doctors, family members and others who can provide insight.

Online booksellers such as Amazon offer a long list of such books, available in print copies or as downloads to Kindle, Nook, iPad or other electronic devices.

Hope Hospice always advises those who have received a terminal diagnosis to reach out to a hospice agency as soon as possible. Similarly, it’s a good idea to become informed about death and the dying process earlier, rather than later.

Here are a handful of titles you might want to consider:

Final Gifts, Understanding the Special Awareness, Needs, and Communications of the Dying by hospice nurses Maggie Callanan and Patricia Kelley (published 1997)

Dying Well, Peace and Possibilities at the End of Life, by Dr. Ira Byock (published 1998)

At the End of Life, True Stories About How We Die, edited by Lee Gutkind (published 2012)

On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families, by Elisabeth Kubler-Ross, M.D. (published 1969)

Remember, the time to read these books is now. Your loved one may have years left or she/he may have weeks. The process of dying is made up of many elements. The more you know, the better for you and your loved one.