Cover image for Dying at home : a family guide for caregiving
Title:
Dying at home : a family guide for caregiving
Author:
Sankar, Andrea.
Personal Author:
Edition:
Revised and updated edition.
Publication Information:
Baltimore, Md.: Johns Hopkins University Press, 1999.
Physical Description:
xxv, 298 pages : illustrations ; 24 cm.
Language:
English
ISBN:
9780801862021

9780801862038
Format :
Book

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Central Library R726.8 .S26 1999 Adult Non-Fiction Central Closed Stacks
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Summary

Summary

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. 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. Dying at Home is an intimate account based on extensive interviews with family and professional caregivers as well as with other family members, friends, and patients. The author addresses the concerns and problems of those who face the decision of whether to care for a dying loved one at home, including preparing the home environment for caregiving; how to use professional caregivers in the home setting; managing the patient's pain, agitation, and other conditions; and how to recognize impending death and what to do immediately after death. She draws from stories that represent a wide range of circumstances and causes of death. At home, surrounded by family and friends in a comforting environment, patients have some control over what remains of their lives. "Home death is a powerfully significant experience," the author writes, "despite the strain, exhaustion, and conflict that sometimes accompany it. Its power lies in the fact that in the face of certain death, the caregiver can give the person life, that is, the continuation of life as a social being." Praise for Dying at Home: "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


Summary

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.

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.

Dying at Home is an intimate account based on extensive interviews with family and professional caregivers as well as with other family members, friends, and patients. The author addresses the concerns and problems of those who face the decision of whether to care for a dying loved one at home, including preparing the home environment for caregiving; how to use professional caregivers in the home setting; managing the patient's pain, agitation, and other conditions; and how to recognize impending death and what to do immediately after death. She draws from stories that represent a wide range of circumstances and causes of death.

At home, surrounded by family and friends in a comforting environment, patients have some control over what remains of their lives. "Home death is a powerfully significant experience," the author writes, "despite the strain, exhaustion, and conflict that sometimes accompany it. Its power lies in the fact that in the face of certain death, the caregiver can give the person life, that is, the continuation of life as a social being."


Author Notes

Andrea Sankar, a medical anthropologist and gerontologist, is director of the Medical Anthropology Program in the Department of Anthropology at Wayne State University.


Andrea Sankar, a medical anthropologist and gerontologist, is director of the Medical Anthropology Program in the Department of Anthropology at Wayne State University.


Reviews 4

Publisher's Weekly Review

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.) (c) Copyright PWxyz, LLC. All rights reserved


Library Journal Review

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. (c) Copyright 2010. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.


Publisher's Weekly Review

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.) (c) Copyright PWxyz, LLC. All rights reserved


Library Journal Review

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. (c) Copyright 2010. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.


Table of Contents

List of Illustrations and Tablesp. xiii
Preface to the Revised Editionp. xv
Acknowledgmentsp. xix
Some Who Died at Homep. xxi
Introductionp. 1
Home Death: A Return to Traditionp. 1
The Term Caregiverp. 2
Factors Contributing to the Trendp. 3
The Desire for Controlp. 3
The Hospice Movementp. 4
The Limitations of Medical Sciencep. 4
Advances in Home-based Technology and Pharmacologyp. 4
Change in Insurance Reimbursementp. 5
Problems of Caregivingp. 5
The Dying Personp. 5
Intimacyp. 6
The Caregiver's Responsibilityp. 7
Physical and Emotional Staminap. 10
Expensesp. 10
Deciding Whether to Become a Caregiverp. 11
The Research for This Bookp. 13
The Methodp. 13
The Informantsp. 14
How to Read This Bookp. 15
1. Taking the Patient Home to Diep. 17
Participating in Hospital Carep. 17
The Appropriateness of Treatmentp. 18
Proceduresp. 19
Bedside Nursingp. 19
Communicating with the Hospital Staffp. 21
The Decision to Discharge the Patientp. 25
Discharge Optionsp. 26
Planning the Dischargep. 27
The Transfer Homep. 34
Rehospitalizationp. 35
Reasons for Readmissionp. 35
Considering Readmissionp. 39
2. Strangers in the Home: The Use of Formal Supportp. 42
The Functions of Formal Supportp. 42
To Provide Respitep. 42
To Provide Skilled Carep. 43
To Supply Information and Reassurancep. 44
To Offer Spiritual Supportp. 46
Deciding to Use Formal Supportp. 47
Assessing the Need for Servicesp. 50
Types of Agenciesp. 53
Hospicep. 53
Home Carep. 58
Health Maintenance Organizationp. 58
Professionals Who Work in the Homep. 59
Physiciansp. 60
Nursesp. 62
Home Health Aidesp. 63
Other Professionalsp. 64
Gaining Access to the Formal Systemp. 65
Access through Discharge from the Hospitalp. 65
Access without Prior Hospitalizationp. 68
Contacting an Agencyp. 69
Preparationsp. 69
Questions to Askp. 69
Finding the Right Peoplep. 73
Maintaining Privacy: Establishing Boundariesp. 76
3. Caregivingp. 79
The Caregiver's Rolep. 79
Problem Solvingp. 80
Decision Makingp. 83
Ethical Dilemmasp. 85
Conflictsp. 87
The Dignity and Autonomy of the Dying Personp. 92
Becoming an Expertp. 94
The Patient Logp. 94
The Quality of Lifep. 98
4. Social Supportp. 101
The Meaning of Social Supportp. 102
Types of Supportp. 103
Support for the Dying Personp. 104
Support for the Caregiverp. 106
Spiritual Supportp. 108
How the Support System Worksp. 110
Decision Makingp. 110
Integrating Support into the Caregiving Routinep. 111
Reciprocityp. 112
Organizing a Support Systemp. 113
The Inclusion of Childrenp. 115
Problems in the Support Systemp. 118
When Support Doesn't Workp. 118
Lack of Social Supportp. 120
5. The Well-being of the Caregiverp. 125
Day to Dayp. 125
The Physical Drainp. 128
The Emotional Strainp. 131
Griefp. 131
Lack of Controlp. 132
Angerp. 134
Fear of Deathp. 136
Responsibilities to Othersp. 138
Copingp. 140
Taking Breaksp. 141
Social Supportp. 142
Support Groups and Therapyp. 143
Laughterp. 144
Making Life Easierp. 145
Workp. 146
Spiritual Supportp. 148
What Enabled Caregivers to Care and What It Meant to Themp. 148
6. Demystifying Deathp. 152
Signs of Approaching Deathp. 153
Immediately after Deathp. 154
Emergency Medical Services (EMS)p. 154
Removing the Bodyp. 156
Childrenp. 156
Suicidep. 157
Some Who Died at Homep. 159
Alice Clarkp. 159
Jim DeMottp. 161
Lisa Knottp. 164
Elizabeth Krolickp. 165
Al Martinp. 168
Joyce Smithp. 170
Dorothy Steadp. 172
David Steinerp. 174
Herbert Wolfp. 175
John Wrightp. 177
7. After Deathp. 182
The Funeralp. 182
Griefp. 188
Practical Concernsp. 194
Before Deathp. 194
After Deathp. 195
Settling Financial Mattersp. 196
Documents Neededp. 197
Conclusion: Living while Dyingp. 198
Appendix A Tasks and Problems of Caregivingp. 201
General Carep. 202
Appearancep. 202
Hygienep. 202
Skin Carep. 203
Sexualityp. 207
Health Carep. 208
Nutritionp. 208
Eliminationp. 215
Mobility and Fallsp. 218
Transfersp. 220
Eye Carep. 222
Sleepp. 222
Cognitive Impairmentp. 224
Agitationp. 225
Administering Medicationp. 226
Breathing Problemsp. 230
Oxygenp. 230
Seizuresp. 231
Control of Painp. 231
Assessmentp. 233
Appendix B Additional Resourcesp. 238
Generalp. 238
Control of Painp. 238
Living Willsp. 240
Caregiving at Homep. 240
Nursing Homesp. 241
Suicidep. 242
Griefp. 242
Appendix C Pain Medicationsp. 245
Appendix D Sample Lettersp. 248
Appendix E Caregiving and HIVp. 250
Introductionp. 250
Helping the Caregiver Copep. 251
Infection Control Precautions for the Home Settingp. 254
Home Health Care Needs of Adults with HIVp. 256
Painp. 257
Rights of HIV Infected Patientsp. 258
End-of-Life Decisionsp. 260
Appendix F Michigan Dignified Death Actp. 262
Glossaryp. 275
Bibliographyp. 285
Indexp. 289
List of Illustrations and Tablesp. xiii
Preface to the Revised Editionp. xv
Acknowledgmentsp. xix
Some Who Died at Homep. xxi
Introductionp. 1
Home Death: A Return to Traditionp. 1
The Term Caregiverp. 2
Factors Contributing to the Trendp. 3
The Desire for Controlp. 3
The Hospice Movementp. 4
The Limitations of Medical Sciencep. 4
Advances in Home-based Technology and Pharmacologyp. 4
Change in Insurance Reimbursementp. 5
Problems of Caregivingp. 5
The Dying Personp. 5
Intimacyp. 6
The Caregiver's Responsibilityp. 7
Physical and Emotional Staminap. 10
Expensesp. 10
Deciding Whether to Become a Caregiverp. 11
The Research for This Bookp. 13
The Methodp. 13
The Informantsp. 14
How to Read This Bookp. 15
1. Taking the Patient Home to Diep. 17
Participating in Hospital Carep. 17
The Appropriateness of Treatmentp. 18
Proceduresp. 19
Bedside Nursingp. 19
Communicating with the Hospital Staffp. 21
The Decision to Discharge the Patientp. 25
Discharge Optionsp. 26
Planning the Dischargep. 27
The Transfer Homep. 34
Rehospitalizationp. 35
Reasons for Readmissionp. 35
Considering Readmissionp. 39
2. Strangers in the Home: The Use of Formal Supportp. 42
The Functions of Formal Supportp. 42
To Provide Respitep. 42
To Provide Skilled Carep. 43
To Supply Information and Reassurancep. 44
To Offer Spiritual Supportp. 46
Deciding to Use Formal Supportp. 47
Assessing the Need for Servicesp. 50
Types of Agenciesp. 53
Hospicep. 53
Home Carep. 58
Health Maintenance Organizationp. 58
Professionals Who Work in the Homep. 59
Physiciansp. 60
Nursesp. 62
Home Health Aidesp. 63
Other Professionalsp. 64
Gaining Access to the Formal Systemp. 65
Access through Discharge from the Hospitalp. 65
Access without Prior Hospitalizationp. 68
Contacting an Agencyp. 69
Preparationsp. 69
Questions to Askp. 69
Finding the Right Peoplep. 73
Maintaining Privacy: Establishing Boundariesp. 76
3. Caregivingp. 79
The Caregiver's Rolep. 79
Problem Solvingp. 80
Decision Makingp. 83
Ethical Dilemmasp. 85
Conflictsp. 87
The Dignity and Autonomy of the Dying Personp. 92
Becoming an Expertp. 94
The Patient Logp. 94
The Quality of Lifep. 98
4. Social Supportp. 101
The Meaning of Social Supportp. 102
Types of Supportp. 103
Support for the Dying Personp. 104
Support for the Caregiverp. 106
Spiritual Supportp. 108
How the Support System Worksp. 110
Decision Makingp. 110
Integrating Support into the Caregiving Routinep. 111
Reciprocityp. 112
Organizing a Support Systemp. 113
The Inclusion of Childrenp. 115
Problems in the Support Systemp. 118
When Support Doesn't Workp. 118
Lack of Social Supportp. 120
5. The Well-being of the Caregiverp. 125
Day to Dayp. 125
The Physical Drainp. 128
The Emotional Strainp. 131
Griefp. 131
Lack of Controlp. 132
Angerp. 134
Fear of Deathp. 136
Responsibilities to Othersp. 138
Copingp. 140
Taking Breaksp. 141
Social Supportp. 142
Support Groups and Therapyp. 143
Laughterp. 144
Making Life Easierp. 145
Workp. 146
Spiritual Supportp. 148
What Enabled Caregivers to Care and What It Meant to Themp. 148
6. Demystifying Deathp. 152
Signs of Approaching Deathp. 153
Immediately after Deathp. 154
Emergency Medical Services (EMS)p. 154
Removing the Bodyp. 156
Childrenp. 156
Suicidep. 157
Some Who Died at Homep. 159
Alice Clarkp. 159
Jim DeMottp. 161
Lisa Knottp. 164
Elizabeth Krolickp. 165
Al Martinp. 168
Joyce Smithp. 170
Dorothy Steadp. 172
David Steinerp. 174
Herbert Wolfp. 175
John Wrightp. 177
7. After Deathp. 182
The Funeralp. 182
Griefp. 188
Practical Concernsp. 194
Before Deathp. 194
After Deathp. 195
Settling Financial Mattersp. 196
Documents Neededp. 197
Conclusion: Living while Dyingp. 198
Appendix A Tasks and Problems of Caregivingp. 201
General Carep. 202
Appearancep. 202
Hygienep. 202
Skin Carep. 203
Sexualityp. 207
Health Carep. 208
Nutritionp. 208
Eliminationp. 215
Mobility and Fallsp. 218
Transfersp. 220
Eye Carep. 222
Sleepp. 222
Cognitive Impairmentp. 224
Agitationp. 225
Administering Medicationp. 226
Breathing Problemsp. 230
Oxygenp. 230
Seizuresp. 231
Control of Painp. 231
Assessmentp. 233
Appendix B Additional Resourcesp. 238
Generalp. 238
Control of Painp. 238
Living Willsp. 240
Caregiving at Homep. 240
Nursing Homesp. 241
Suicidep. 242
Griefp. 242
Appendix C Pain Medicationsp. 245
Appendix D Sample Lettersp. 248
Appendix E Caregiving and HIVp. 250
Introductionp. 250
Helping the Caregiver Copep. 251
Infection Control Precautions for the Home Settingp. 254
Home Health Care Needs of Adults with HIVp. 256
Painp. 257
Rights of HIV Infected Patientsp. 258
End-of-Life Decisionsp. 260
Appendix F Michigan Dignified Death Actp. 262
Glossaryp. 275
Bibliographyp. 285
Indexp. 289

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