Read these books on how to cope with hospice care

Deciding to enter hospice or palliative care is a difficult time. There are few words to describe the emotional turmoil that can come with a terminal illness or other medical issues. However, many people can find some comfort in hospice care, and can live the rest of their lives surrounded by people who want to help them with their daily activities. If you are considering or are in hospice care, here are some books that can help you cope with where you’re at and find peace in your life. 

Demystifying Hospice: Inside the Stories of Patients and Caregivers by Karen J. Clayton

This collection of insights from different people about their experiences with hospice care dives deep into some of the underlying advantages of hospice care. It describes “real life examples of personalized comfort care, offered by an interdisciplinary team, wherever the patient lives.”

Reading accounts of the immense support and care one can receive from complete strangers is heart lifting, and can offer the reader a glimpse into the hope and healing that hospice care can provide. The author, Karen Clayton, an experienced social worker, wrote this book because she felt people often do not elect to enter hospice care because they don’t understand what it entails; she wanted to convey how, while there is a stigma around it, hospice care mostly fulfills its purpose of giving quality comfort care to patients who need it the most.

A Companion for the Hospice Journey: Thoughts on Life’s Tough Decisions by Larry Pattern

This novel is for anyone who is struggling with thoughts of dying, a loved one dying, or a loved one who has passed away, but it particularly focuses on the end-of-life process for patients in hospice.

There are a few sections: one consisting of letters written to those considering hospice care, one discussing the stages of before, during, and after hospice care, and one listing things everyone should know about hospice care as well as information on what to expect from a hospice team.

While some parts of the book sound more informational than heartfelt, many reviewers have called the letters and overall tone very emotional, as if a friend was talking with you. The book encourages you to pick and choose which sections you want to read (based on what you think will suit your needs), which means it lends itself to flexibility in your reading.

Using Hope to Cope With Dying by Cathleen Fanslow-Brunjes

This book introduces you to the “Hope System” created by Cathleen Fanslow-Brunjes, an internationally acclaimed expert in the fields of death, dying, grief, and hospice care. Her system is “a proven program that has helped more than 40,000 dying individuals at all stages of the dying process.”

The book focuses on the four stages of hope: hope for a cure, hope for a treatment, hope for prolongation of life, and hope for a peaceful death. The author emphasizes that acknowledging, focusing, and understanding these hopes can help one cope with dying and end-of-life.

The book also discusses other important topics related to hospice care, with chapters such as “The Patient’s Journey,” “Wisdom of the Dying and the Choice of the Moment,” and “The Hand-Heart Connection.”

Dying Well with Hospice: A Compassionate Guide to End of Life Care by Jo Gustely & Paula Wren

This book gives plenty of helpful information, as well as soothing words for a hospice patient. It demonstrates how to use advance planning to carry out your wishes, offers suggestions for beginning this conversation with loved ones and family members, provides options for making end-of-life peaceful and dignified, and gives insight into the extraordinary support and resources for hospice care.

On a more emotional level, it helps a hospice patient see past the myth that “terminal patients who choose to end treatment have ‘given up’” because ultimately “end of life can be embraced fully when the distractions of treatment are removed at the choice of the patient, allowing them to decide what they want to do with their remaining time.”

Hospice care represents a difficult time for a patient and their loved ones, but hopefully some or all of these books can shed some light on the situation and leave you with more peace of mind. Perhaps you find a new perspective on these topics, or you know someone who could use some of these words of advice. Either way, taking advice from these experienced professionals can help anyone cope with the end-of-life process.

— Avery Tamura