It’s undeniable that over time, average life expectancy has increased. Thanks to better sanitation and medical advancements, people are living longer than ever before. But quantity of life doesn’t always equal quality of life. People with life-limiting conditions need a level of care beyond what standard hospitals offer. This is when people turn to palliative care or hospice.
Jump ahead to these sections:
- Hospice & Palliative Care Books for Families
- Hospice & Palliative Care Books for Patients
- Hospice & Palliative Care Books for Nurses, Doctors, and Students
If you or someone you love has a life-altering or terminal illness, you can find some relief form hospice or palliative care. Both types of healthcare are invaluable for patients and their families. Here are some books that can help you learn more about these holistic services.
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Hospice & Palliative Care Books for Families
Many of us shield ourselves from the messy business of dying until it hits close to home. If you or someone you love is diagnosed with a terminal or life-altering illness, it’s easy to feel overwhelmed. These books can help you get better informed on the ways you or your loved one can manage their care.
1. Dying Well: Peace and Possibilities at the End of Life by Dr. Ira Byock
Dr. Ira Byock is one of the most well-established authorities in the field of hospice care. He was one of the early proponents of hospice and palliative care back in the late 1970s and has created and directed well-known programs in the field. In this book, he shares the stories of several patients that were under his care over the years.
While the book is older, it’s an invaluable tool for family members who want to understand the holistic nature of end-of-life care.
2. Midwife for Souls: Spiritual Care for the Dying by Kathy Kalina
Hospice and palliative care aren’t just about caring for a sick person’s physical needs. It is holistic care, which means also tending to a person’s emotional and spiritual needs.
This particular book is written from a Catholic perspective on the power of prayer. It serves as a guide for family and friends who don’t know what to say to a religious loved one who is sick or dying.
3. Intimate Death: How the Dying Teach Us How to Live by Marie de Hennezel
The experiences of death and dying transcend language and geography. This book was penned by a psychologist at a hospital for the terminally ill in Paris.
Her spare, elegiac stories about the patients she treated and their families are transformative. This book will profoundly change the way many people perceive death.
4. Can’t We Talk about Something More Pleasant? by Roz Chast
Even the most beautifully-written book about hospice care can be overwhelmingly sad. Chast brings some much-needed levity into this visual memoir of caring for her elderly parents.
Chast’s cartoons in The New Yorker have expertly distilled recognizable characters into comic form. That same keenly-observed wit is on display here.
5. The Soul of Care: The Moral Education of a Husband and a Doctor by Dr. Arthur Kleinman
When Joan Kleinman was diagnosed with early-onset Alzheimer’s disease, her husband Arthur was thrust into a caregiver role. As a Harvard-trained psychiatrist and social anthropologist, he was better equipped than most to deal with the emotional challenges.
However, it still proved incredibly challenging. In this book, he shares his experiences as both a medical professional and a caregiver to a loved one. It’s a valuable read for people put into a caregiver role who feel overwhelmed.
Hospice & Palliative Care Books for Patients
When you have been diagnosed with a life-altering or terminal illness, it’s easy to feel alone. You may want to put on a brave face for family members, even as you struggle with fear.
Knowing about your care options can help you become more at peace, no matter your prognosis. These books can give you a glimpse into other people’s experiences.
6. Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions by Karen Whitley Bell
Bell, a longtime hospice nurse, uses her years of experience to inform this helpful guide. It provides a comprehensive overview of all aspects of hospice care.
It also provides a glimpse into the physical, emotional, and spiritual paths a dying person ventures down. The guide is filled with true stories that are both gentle and reassuring.
7. How We Die: Reflections of Life’s Final Chapter by Dr. Sherwin B. Nuland
Though this book is nearly 25 years old, it remains a bracing text on what to expect as the end of life draws near. Dr. Nuland strips away any mystery surrounding the process of death. It is not always an easy read. It is unflinching at times.
But as a patient, many people will try to give you hope. In doing so, they may unwittingly lie or mislead you. This book will allow you to truly understand what the end of life experience entails in the mainstream medical world. It also helps you prepare for what could be.
8. When Breath Becomes Air by Paul Kalanithi
Kalanithi was 36 years old, a young neurosurgeon finishing up a decade of training. He was a new father.
He was poised to enter incredible new phases in his professional and personal life. Then he was diagnosed with stage IV lung cancer. In the brief time he had left, he penned this memoir about the shocking transition from doctor to patient. This poetic book is deeply emotional.
9. The LastingMatters Organizer: Where Loved Ones Find What Matters Most by Barbara Bates Sedoric
Hospice and palliative care don’t just prepare a patient for the process of death and dying. They can also help family members. This organizer is another helpful tool. It can be hard for friends and family to know what to do when their loved ones die.
This organizer can help you prepare as much as possible for what comes after death. This includes planning for funeral arrangements, arranging a living will, and getting finances in order. Prep work like this will ease the burden on your loved ones.
10. A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death by Dr. BJ Miller and Shoshanna Berger
When patients enter hospice care, they can struggle with the feeling that they have failed. We frame illness as a battle, and it’s hard not to feel like you’ve done something wrong when it’s apparent you will not triumph over it.
This gentle book helps you find forgiveness in yourself for deciding to end curative treatment. It reframes your situation so you know that you aren’t waiting to die. Instead, you’re giving yourself the best quality of life possible for whatever time you have left.
Hospice & Palliative Care Books for Nurses, Doctors, and Students
Many doctors are trained to keep an emotional distance from patients in order to provide the best care. While objectivity is important, people are beginning to realize that compassionate care is equally integral to treating patients. These books can help advise medical professionals from multiple disciplines.
11. Hospice and Palliative Medicine Handbook: A Clinical Guide by Susan Bodtke and Kathy Ligon
This handbook is an excellent resource on best practices for palliative care and hospice treatment. Physicians, nurses, and students can quickly reference practical information on many aspects of care.
It helps medical professionals see at a glance how best to provide medical and emotional support to patients and their families. It’s well-organized and comprehensive. This guide is a must-have for any medical practitioner who deals with chronically or terminally ill patients.
12. Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande
Dr. Gawande, a practicing surgeon, is a product of the medical establishment. He was trained to detach himself from patients and their anxieties. But over the years he realized the limitations his profession has imposed on him. He now advocates for more compassionate care.
While this book is geared for patients and their families, all medical professionals should read it, too. Dr. Gawande’s perspective as a medical practitioner is invaluable. You can read our full Being Mortal review if you're interested in more.
13. The Conversation: A Revolutionary Plan for End-of-Life Care by Dr. Angelo E. Volandes
This is another book that is intended for patients and families. But it’s another important book for doctors and other medical professionals to read.
Dr. Volandes breaks down the failures in the for-profit medical system and teaches patients and families how to advocate for the end-of-life care they want and deserve. Healthcare providers must be ready for this conversation, too.
14. Caring for the Dying: The Doula Approach to a Meaningful Death by Henry Fersko-Weiss
An increasing number of people are relying on doulas to help them give birth. Inspired by that, the recent practice of being a death doula has begun.
Like birth doulas, a death doula advocates for their patient and helps them embrace a simpler path. This book is an excellent resource for medical professionals. It sheds light on palliative care and hospice in the present day.
15. LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice by Kimberly Acquaviva
Members of the LGBTQ+ community often face tremendous barriers when it comes to receiving medical care. This even applies when it comes to end-of-life care.
This intersectional guide helps educate doctors, nurses, and other medical professionals on the intricacies of providing LGBTQ-inclusive hospice and palliative care.
Books About Holistic End-Of-Life Care Options
Many books on grief exist. There are even children’s books about death. Most of these books, however, deal with the aftermath of death. As people, we may have less of a hard time coping with death if we begin to demystify the process around end-of-life care.
Hospice and palliative care don’t need to be frightening. They should provide comfort because they are designed to ease physical and emotional suffering. The books on this list should help you begin to understand how kind the end-of-life process can be. Doctors, patients, and family members alike can benefit from this knowledge.