There is a vast collection of books and manuals dealing with end-of-life issues. From understanding the dying process to getting the healthcare that you want, below is a listing of books that might be useful if you are searching for additional information and background.
Guide to the Great Beyond: A Practical Primer to Help You and YOUR LOVED Ones Prepare Medically, Legally, and Emotionally for the End of Life
By Jane Brody
In her inimitably straightforward, informative and intelligent manner, New York Times health columnist Brody gives pragmatic direction to a concerned yet reluctant readership in this essential travel guide for the journey toward the inevitable. In pointing out that there is a difference between sensibly learning to accept death and surrendering, she reminds us that our attitude about living colors our approach to death. Thoroughly outlining all attendant demands and details for facing ones end, Brody provides facts and support for families and patients, and makes it appear entirely possible to go with grace. With bulleted lists itemizing what needs to be done and how to do it, short portraits and anecdotes throughout, Brody covers the importance of preparation; the necessity of an advance directive and why a living will is not enough; funeral plans; living with a bad prognosis and dealing with uncertainty; care giving; hospice; communicating with doctors; assisted dying; organ donation and autopsy; and legacies.
Crossing Over: Narratives of Palliative Care
By David Barnard, Anna M. Towers, Patricia Boston, Yanna Lambrinidou
The pain of loss can be overcome, says Attig, an "applied philosopher" and past president of the Association for Death Education and Counseling, by survivors who keep alive in their hearts their love for the departed. He repeats his message in each of some 50 brief chapters, using numerous anecdotes gleaned from his experiences as a counselor to explain how he has helped people cope with the loss of loved ones. Whatever the problem a survivor faces, Attig offers his mantra—keep love alive. If we can remember and sustain our connection with the departed, they will always remain with us. Among the death-related topics Attig covers are ways to help children deal with loss; ghosts; the solace of traditional religious rites; how to use memories and stories of loved ones in daily life; and finding the presence of loved ones in familiar places. He recommends that we honor the memory of the departed by acting as they would have wished us to, to work for causes they held dear or even just to reminisce about our relationships with them.
The Complete Eldercare Planner, Second Edition: Where to Start, Which Questions to Ask, and How to Find Help
By Joy Loverde
With a clarity and authority that comes from years of consulting experience, Loverde shares techniques and step-by-step tactics for all aspects of eldercare, from how to first broach the topic with an elder that he or she needs care and finding the best insurance coverage to emergency preparedness and managing the process of dying. Thirteen chapters are organized by a series of plans that instruct and advise the caregiver on how to research, prepare for, and manage a particular issue. An "Action Checklist" and, when applicable, a list of low-cost or free resources punctuate each chapter's end. The chapters on legal matters (estate planning, insurance fraud), money (cost-cutting strategies), and insurance (options beyond Medicare, supplementary coverage, long-term policies) will be particularly helpful to those first grappling with their elder's financial position.
Parting Company: Understanding the Loss of a Loved One: The Caregiver's Journey
By Cynthia Pearson and Margaret Stubbs
Filling a gap in the death and dying literature, coauthors Pearson (The Practical Psychic) and Stubbs, a developmental psychologist and educator, assembled this collection of personal accounts of caregivers of the dying. Many books provide help to the dying or grieving, but countless people embark on the care of a dying loved one with little knowledge of what to expect and few resources to draw upon. These engaging and unflinching narratives told by a demographically diverse group of caregivers provide a variety of viewpoints, from family members and friends to healthcare professionals and counselors. The caregivers tell their stories in their own words with minimal editing. Acknowledging that each reader may learn something different from these accounts, the authors limit interpretation and social analysis to the introduction and end commentary sections.
How to Get the Health Care You Want
By The Savvy Consumer's Guide to Navigating the Health Care System (Author) Laura Casey
In the labyrinth of modern healthcare, many patients lose out at some time or another to confusion, bureaucracy, inefficiency and uncaring providers. Without a savvy guide to differentiate good providers from bad, many of these patients are stuck with the luck of the draw when it comes to treating their illnesses. Laura Casey's How to Get the Healthcare You Want addresses this problem head-on, with proactive solutions that put the patient or patient's advocate back in control to secure the best available care. This book will help you navigate all the ins and outs of modern medical care with straightforward and helpful steps to improving the quality and efficiency of care. It addresses the topics most readers will be concerned about, such as how to work with uncooperative medical professionals or their staff, how to demystify insurance policies and clinician qualifications, and ways to handle billing errors and insurance disputes. The points are illustrated with stories of the author's or her family's experiences— anecdotes that ground the facts in real life and add a personal, conversational tone to the book. The stories provide concrete demonstrations of the ways a patient can receive excellent care based upon his or her individual standards and expectations.
And Thou Shalt Honor: The Caregiver's Companion
By Beth Witrogen McLeod (Editor) and Forward by Rosalynn Carter
It's no news that as American life expectancy increases; the fate of our elderly is in our hands. In her latest volume, editor McLeod, who was nominated for a Pulitzer for her Caregiving: The Spiritual Journey of Love, Loss and Renewal, makes a strong case that care giving also resides in our souls. Throughout this comprehensive and compassionate but unsentimental resource book, actual caregivers tell their stories, acknowledging their vast range of experiences and emotional reactions alongside a gamut of action plans, checklists, as well as medical and support networking information.
Hospice Care for Children
Edited by Ann Armstrong-Daily and Sarah Zarbock
Written for those involved in the care of dying children, this book describes different models of care, the developmental stages of children's understandings of death, the crucial aspects of pain and symptom control and psychological distress. The book outlines Children's Hospice International's Program for All-Inclusive Care for Children and their Families. Particular attention is given to the necessary emotional support for staff, grieving parents and surviving siblings.
NIJH Jewish Hospice Manual
This manual is intended for non-Jewish hospice professionals and volunteers, and also Jewish personnel who do not have a clear sense about what different Jewish religious needs are.
It speaks for all Jews, on the entire spectrum. It will contain definitive, short pieces on the variety of Jewish beliefs from centrist orthodox to Hasidic to conservative to reform to secular to the yeshiva world and to Reconstructionists.
Behoref Hayamim In the Winter Life: A Values Based Jewish Guide For Decision Making at the End of Life
Reconstructionist Rabbinical College, Center for Jewish Ethics
From the preface:
Neither body nor soul exists without the other; they continually interact and influence each other…This book is therefore very Jewish in continually reemphasizing the integration of healing of the body with the healing of the soul. It contains important information on the common medical questions that families face at the end of life-all in language understandable to people not trained in medicine. At the same time, it gives people insights into what the spirit needs at such times and how to provide it, while not neglecting one’s own body or spirit in the process.
A Time to Mourn, a Time to Comfort: A Guide to Jewish Bereavement (The Art of Jewish Living)
By Ron Wolfson and David J. Wolpe
From the foreword:
A guide to meeting the needs of those who mourn and those who seek to provide comfort in times of sadness. While this book is written from a laypersons point of view, it also includes the specifics for funeral preparations and practical guidance for preparing the home and family to sit Shiva. Advice is given for attending a Jewish funeral, how to help during Shiva, what to say to the mourners, and what to write in a condolence letter. Special sections deal with specific situations of modern life, including helping young children grieve and understand Shiva, deaths from AIDS, and mourning the death of an infant or child.
A Guide to Life: Jewish Laws and Customs of Mourning
By Rabbi Tzvi Rabinowicz
A comprehensive guide that covers all Jewish mourning rituals including visiting the sick, the period of mourning, the yahrzeit and words of comfort.
Handbook for Long-Distance Caregivers
By Bob Rosenblatt and Carol Van Steenberg, MSS
A publication provided by the Family Caregiver Alliance, this is a 20 page handbook that covers a range of topics related to long distance caregiving.