Dying at Home: A Family Guide for Caregiving

by Andrea Sankar, Caitlin Cassady (Editor)

Overview

"A growing number of people choose to live their final weeks or months at home. For patients who cannot benefit from acute care in the hospital, home care offers an alternative to a nursing home or hospice. Advances in medical technology and pharmacology allow even those with serious illnesses to remain at home relatively free of pain and symptoms, and professional services are increasingly available to assist family caregivers with work that is often physically and emotionally exhausting."--BOOK JACKET.

"First published in 1991, Dying at Home examined the reasons behind this trend and offered practical advice about assuming as much control as possible over the process of dying. In this thoroughly updated edition, medical anthropologist and gerontologist Andrea Sankar keeps her focus on the patient and loved ones while providing the latest information on hospice home care teams, pain medications, HIV and AIDS, legislation on death with dignity, physician-assisted suicide, and sources of information and support for patients and families."--BOOK JACKET.

Product Details

ISBN-13:	9781421447735
Publisher:	Johns Hopkins University Press
Publication date:	02/20/2024
Series:	A Johns Hopkins Press Health Book
Edition description:	third edition
Pages:	488
Product dimensions:	6.12(w) x 9.25(h) x 1.25(d)

About the Author

Andrea Sankar is a professor of medical anthropology at Wayne State University, where she is also the co-founder and co-director of the Social Work and Anthropology doctoral program. The former editor of Medical Anthropology Quarterly, Sankar was named Michiganian of the Year in 1995 for her work on HIV/AIDS.

Table of Contents

	List of Illustrations and Tables	xiii
	Preface to the Revised Edition	xv
	Acknowledgments	xix
	Some Who Died at Home	xxi
	Introduction	1
	Home Death: A Return to Tradition	1
	The Term Caregiver	2
	Factors Contributing to the Trend	3
	The Desire for Control	3
	The Hospice Movement	4
	The Limitations of Medical Science	4
	Advances in Home-based Technology and Pharmacology	4
	Change in Insurance Reimbursement	5
	Problems of Caregiving	5
	The Dying Person	5
	Intimacy	6
	The Caregiver's Responsibility	7
	Physical and Emotional Stamina	10
	Expenses	10
	Deciding Whether to Become a Caregiver	11
	The Research for This Book	13
	The Method	13
	The Informants	14
	How to Read This Book	15
1.	Taking the Patient Home to Die	17
	Participating in Hospital Care	17
	The Appropriateness of Treatment	18
	Procedures	19
	Bedside Nursing	19
	Communicating with the Hospital Staff	21
	The Decision to Discharge the Patient	25
	Discharge Options	26
	Planning the Discharge	27
	The Transfer Home	34
	Rehospitalization	35
	Reasons for Readmission	35
	Considering Readmission	39
2.	Strangers in the Home: The Use of Formal Support	42
	The Functions of Formal Support	42
	To Provide Respite	42
	To Provide Skilled Care	43
	To Supply Information and Reassurance	44
	To Offer Spiritual Support	46
	Deciding to Use Formal Support	47
	Assessing the Need for Services	50
	Types of Agencies	53
	Hospice	53
	Home Care	58
	Health Maintenance Organization	58
	Professionals Who Work in the Home	59
	Physicians	60
	Nurses	62
	Home Health Aides	63
	Other Professionals	64
	Gaining Access to the Formal System	65
	Access through Discharge from the Hospital	65
	Access without Prior Hospitalization	68
	Contacting an Agency	69
	Preparations	69
	Questions to Ask	69
	Finding the Right People	73
	Maintaining Privacy: Establishing Boundaries	76
3.	Caregiving	79
	The Caregiver's Role	79
	Problem Solving	80
	Decision Making	83
	Ethical Dilemmas	85
	Conflicts	87
	The Dignity and Autonomy of the Dying Person	92
	Becoming an Expert	94
	The Patient Log	94
	The Quality of Life	98
4.	Social Support	101
	The Meaning of Social Support	102
	Types of Support	103
	Support for the Dying Person	104
	Support for the Caregiver	106
	Spiritual Support	108
	How the Support System Works	110
	Decision Making	110
	Integrating Support into the Caregiving Routine	111
	Reciprocity	112
	Organizing a Support System	113
	The Inclusion of Children	115
	Problems in the Support System	118
	When Support Doesn't Work	118
	Lack of Social Support	120
5.	The Well-being of the Caregiver	125
	Day to Day	125
	The Physical Drain	128
	The Emotional Strain	131
	Grief	131
	Lack of Control	132
	Anger	134
	Fear of Death	136
	Responsibilities to Others	138
	Coping	140
	Taking Breaks	141
	Social Support	142
	Support Groups and Therapy	143
	Laughter	144
	Making Life Easier	145
	Work	146
	Spiritual Support	148
	What Enabled Caregivers to Care and What It Meant to Them	148
6.	Demystifying Death	152
	Signs of Approaching Death	153
	Immediately after Death	154
	Emergency Medical Services (EMS)	154
	Removing the Body	156
	Children	156
	Suicide	157
	Some Who Died at Home	159
	Alice Clark	159
	Jim DeMott	161
	Lisa Knott	164
	Elizabeth Krolick	165
	Al Martin	168
	Joyce Smith	170
	Dorothy Stead	172
	David Steiner	174
	Herbert Wolf	175
	John Wright	177
7.	After Death	182
	The Funeral	182
	Grief	188
	Practical Concerns	194
	Before Death	194
	After Death	195
	Settling Financial Matters	196
	Documents Needed	197
	Conclusion: Living while Dying	198
Appendix A	Tasks and Problems of Caregiving	201
	General Care	202
	Appearance	202
	Hygiene	202
	Skin Care	203
	Sexuality	207
	Health Care	208
	Nutrition	208
	Elimination	215
	Mobility and Falls	218
	Transfers	220
	Eye Care	222
	Sleep	222
	Cognitive Impairment	224
	Agitation	225
	Administering Medication	226
	Breathing Problems	230
	Oxygen	230
	Seizures	231
	Control of Pain	231
	Assessment	233
Appendix B	Additional Resources	238
	General	238
	Control of Pain	238
	Living Wills	240
	Caregiving at Home	240
	Nursing Homes	241
	Suicide	242
	Grief	242
Appendix C	Pain Medications	245
Appendix D	Sample Letters	248
Appendix E	Caregiving and HIV	250
	Introduction	250
	Helping the Caregiver Cope	251
	Infection Control Precautions for the Home Setting	254
	Home Health Care Needs of Adults with HIV	256
	Pain	257
	Rights of HIV Infected Patients	258
	End-of-Life Decisions	260
Appendix F	Michigan Dignified Death Act	262
	Glossary	275
	Bibliography	285
	Index	289

Editorial Reviews

3 Stars from Doody

Since the first edition of this book, many advancements and changes have occurred regarding the treatment of the terminally ill. This revised edition has been formatted to reflect and address these changes. In the presence of a better understanding of death, care givers and clinicians remain confused on the issue of treatment options and symptom management for the terminal patient. The author of this text seeks to address these issues from a personal and professional perspective. She also addresses the social stigma placed on certain terminal diseases such as AIDS and the acceptance that these patients need. The text has been designed for the average lay person as well as novice clinicians involved in end-of-life care. As a medical anthropologist and gerontologist, the author provides a sensitive and practical approach to these difficult issues. One of the most notable changes that has emerged since this book was first published in 1991 relating to end-of-life is that of physician assisted suicide. To address this issue, the author disseminates information regarding the appropriate types of symptom management -- including pain management -- available to patients. In regard to pain management, she addresses numerous routes for the administration of pain medication. However, she omits the transdermal route, which is a non-invasive, viable option for this patient population. There are several references given within the text where patients, family members, and clinicians can receive further information regarding topics of interest. However, the name of the nurses' organization is incorrect. The Oncology Nurses Association mentioned is actually the Oncology Nursing Society locatedin Pittsburgh, Pennsylvania. The unique presentation of actual cases brings that personal touch that is often missing in texts on the issues of death and dying.

Lisa Stepp

Sankar's book is more than just a practical how-to for those who are caring for the terminally ill at home. It is also a deeply moving, painfully honest look at the experience of tending a dying loved one. Drawing on her home-care expertise and training as a medical anthropologist, Wayne State University professor Sankar (coauthor of The Home Care Experience ) interviewed 13 caregivers. What's essential, say she and her subjects, is to give patients ``the recognition that they are still among the living.'' The process can provide families with a sense of intimacy and empowerment they might never feel in a hospital setting. Chapters are organized around significant issues discussed by the caregivers: the decision to take the patient home to die, use of professional help in the home, caregiving and social support, and death. All of the caregivers evidently felt that they were not ``special'' because of their efforts. They were beneficiaries, too. ``Home death is a powerfully significant experience. . . . Its power lies in the fact that . . . the caregiver can give the person life, that is, the continuation of life as a social being.'' (Dec.)

Publishers Weekly - Publisher's Weekly

Sankar, a medical anthropologist and co-editor of The Home Care Experience: Ethnography and Policy (Sage Pubns., 1990), has written a book on home death for those already caring for a terminally ill loved one at home or those considering it. The author examines the physical, social, and emotional toll involved and illuminates each topic--discharge to home, formal and informal support, caregiving, signs of death, and after death--with apt and often moving observations made by people who experienced the home death of a child, parent, or spouse or companion. Recommended for health, hospice, gerontology, and larger general collections. See also Harry A. Cole's Helpmates: Support in Times of Chronic Illness, reviewed in this issue, p. 105.--Ed.-- Anne C. Tomlin, Auburn Me morial Hosp . Lib., N.Y.

Library Journal

In the context of more and more terminally ill people chosing to die at home rather than in a hospital or hospice, Sankar (medical anthropology and gerontology, Wayne State U.) addresses the concerns and problems of those facing the decision whether to care for a dying loved one at home, including preparing the home environment, using professional caregivers, managing pain and other conditions, recognizing impending death, and what to do immediately after death. She updates her 1991 edition with recent practices, medications, and factors such as physician-assisted suicide. The glossary does not indicate pronunciation. Annotation c. Book News, Inc., Portland, OR (booknews.com)

Booknews

Caring for the dying person at home is one of the most important and meaningful tasks anyone can undertake. This book is a wonderful guide toward that end. I strongly recommend it for family physicians.
—Journal of the American Board of Family Practice

A powerful guide to making the emotional time of caring for a dying loved one a bit more manageable.
—Solutions: Canada's Family Guide to Home Health Care and Wellness

A wealth of practical information and thoughtful discussion.
—Milwaukee Journal

Begins to fill our deficit of experience with accurate information and compassionately told stories.
—San Francisco Chronicle

The author combines her professional knowledge of home care with her personal experience of caring for her dying mother at home. The result is a concise volume geared to the lay person that presents a clear picture of the issues, problems, and accomplishments arising from the patient's decision to die at home and the special role of the patient's caregiver.
—Cathy Coyle, Social Work in Health Care

One of the book's most appealing features, beyond its sympathetic yet straightforward manner, is that it reports research while including helpful hints and extensive quotations from actual caregivers.
—Jeanne E. Bader, Aging Today

Andrea Sankar tells us we have not solved the problem of caregivers' pain . . . She gives voice to the caregivers of dying patients and highlights their concerns . . . Andrea Sankar may be the Benjamin Spock for care of the terminally ill.
—Priscilla Kissick, Hospice Journal

This book is meant for lay readers, but could serve as a valuable resource for health care professionals. It is an outstanding reference for the physician to recommend to the family or caregiver of the patient who wants to die at home. Using a variety of illustrative case studies, Dying at Home provides useful and practical guidance for the caregivers of a dying family member or friend.
—Joseph R. Stenger, Journal of Family Practice

From the Publisher

Reviewer: Lisa Stepp, PhD, RN, APN, AOCN, CRNH (Private Practice)
Description: Since the first edition of this book, many advancements and changes have occurred regarding the treatment of the terminally ill. This revised edition has been formatted to reflect and address these changes.
Purpose: In the presence of a better understanding of death, care givers and clinicians remain confused on the issue of treatment options and symptom management for the terminal patient. The author of this text seeks to address these issues from a personal and professional perspective. She also addresses the social stigma placed on certain terminal diseases such as AIDS and the acceptance that these patients need.
Audience: The text has been designed for the average lay person as well as novice clinicians involved in end-of-life care. As a medical anthropologist and gerontologist, the author provides a sensitive and practical approach to these difficult issues.
Features: One of the most notable changes that has emerged since this book was first published in 1991 relating to end-of-life is that of physician assisted suicide. To address this issue, the author disseminates information regarding the appropriate types of symptom management — including pain management — available to patients. In regard to pain management, she addresses numerous routes for the administration of pain medication. However, she omits the transdermal route, which is a non-invasive, viable option for this patient population.
Assessment: There are several references given within the text where patients, family members, and clinicians can receive further information regarding topics of interest. However, the name of the nurses' organization is incorrect. The Oncology Nurses Association mentioned is actually the Oncology Nursing Society located in Pittsburgh, Pennsylvania. The unique presentation of actual cases brings that personal touch that is often missing in texts on the issues of death and dying.

Doody's Review Service

A wealth of practical information and thoughtful discussion.

Milwaukee Journal

This book is meant for lay readers, but could serve as a valuable resource for health care professionals. It is an outstanding reference for the physician to recommend to the family or caregiver of the patient who wants to die at home. Using a variety of illustrative case studies, Dying at Home provides useful and practical guidance for the caregivers of a dying family member or friend.

Journal of Family Practice - Joseph R. Stenger

A powerful guide to making the emotional time of caring for a dying loved one a bit more manageable.

Solutions: Canada's Family Guide to Home Health Care and Wellness

The author combines her professional knowledge of home care with her personal experience of caring for her dying mother at home. The result is a concise volume geared to the lay person that presents a clear picture of the issues, problems, and accomplishments arising from the patient's decision to die at home and the special role of the patient's caregiver.

Social Work in Health Care - Cathy Coyle

Begins to fill our deficit of experience with accurate information and compassionately told stories.

San Francisco Chronicle

Caring for the dying person at home is one of the most important and meaningful tasks anyone can undertake. This book is a wonderful guide toward that end. I strongly recommend it for family physicians.

Journal of the American Board of Family Practice

One of the book's most appealing features, beyond its sympathetic yet straightforward manner, is that it reports research while including helpful hints and extensive quotations from actual caregivers.

Aging Today - Jeanne E. Bader

Andrea Sankar tells us we have not solved the problem of caregivers' pain . . . She gives voice to the caregivers of dying patients and highlights their concerns . . . Andrea Sankar may be the Benjamin Spock for care of the terminally ill.

Hospice Journal - Priscilla Kissick

"Begins to fill our deficit of experience with accurate information and compassionately told stories."

San Francisco Chronicle

"A powerful guide to making the emotional time of caring for a dying loved one a bit more manageable."

Solutions: Canada's Family Guide to Home Health Care and Wellness

This book is meant for lay readers, but could serve as a valuable resource for health care professionals. It is an outstanding reference for the physician to recommend to the family or caregiver of the patient who wants to die at home. Using a variety of illustrative case studies, Dying at Home provides useful and practical guidance for the caregivers of a dying family member or friend.

— Joseph R. Stenger

Journal of Family Practice

Andrea Sankar tells us we have not solved the problem of caregivers' pain... She gives voice to the caregivers of dying patients and highlights their concerns... Andrea Sankar may be the Benjamin Spock for care of the terminally ill.

— Priscilla Kissick

Hospice Journal

One of the book's most appealing features, beyond its sympathetic yet straightforward manner, is that it reports research while including helpful hints and extensive quotations from actual caregivers.

— Jeanne E. Bader

Aging Today

The author combines her professional knowledge of home care with her personal experience of caring for her dying mother at home. The result is a concise volume geared to the lay person that presents a clear picture of the issues, problems, and accomplishments arising from the patient's decision to die at home and the special role of the patient's caregiver.

— Cathy Coyle

Social Work in Health Care