Caring for Donor Families Before, During and After

by Maloney, Raelynn; Wolfelt, Alan D

• ISBN13: 9781617221361
• ISBN10: 1617221368
• Edition: 2nd
• Format: Paperback
• Copyright: 2011-04-01
• Publisher: Companion Press

Summary

Integrating vital information on the dynamics of the donation experience and grief education, this revised second edition provides an invaluable resource for hospital and organ procurement caregivers. Going beyond helping professionals understand the challenges of obtaining consent, this guide invites them to offer compassionate care throughout the family's experience with the death, including the months and years following. The chapters include information on understanding the family's initial responses, helping families understand brain death, facilitating the donation discussion, assisting families with meaningful leave-taking rituals, understanding long-term grief responses, and establishing an ongoing family support program. Three easy-to-follow sections--before, during, and after the donation experience--guarantee that caregivers can easily access the section most relevant to their role with the family.

Author Biography

Raelynn Maloney, PhD, is an author, an educator, and a practicing psychologist. She provides consultation and education on various topics related to grief and caregiving to hospitals and procurement agencies throughout North America. She lives in Littleton, Colorado. Alan D. Wolfelt, PhD, is the director of the Center for Loss and Life Transition. He is the author of Healing Your Grieving Heart, The Journey Through Grief, and Understanding Your Grief. He lives in Fort Collins, Colorado.

Table of Contents

Foreword	p. 1
Introduction	p. 5
Before: Caring for the Family from the Beginning	p. 11
Co-Creating A Meaningful Experience	p. 11
Understanding The Family's Initial Responses	p. 12
The Special Immediate Needs of the Donor Family	p. 18
Physical Needs	p. 19
Nourishment/Bodily Care	p. 19
Nearness to the Person	p. 20
Physical Safety	p. 20
Emotional Needs	p. 21
Time with the Injured Person	p. 21
Time Alone	p. 22
Permission for Emotional Expression	p. 22
To Observe ôGood Careö	p. 23
To Take an Active Role	p. 23
Guidance or Permission to Do the Unthinkable	p. 24
Cognitive Needs	p. 26
Information About the Injury, Prognosis, and Declaration of Death	p. 26
Information in ôDosesö	p. 26
Choices and Options	p. 26
Social Needs	p. 27
Supportive Presence	p. 27
Support from Other Bereaved Families	p. 28
Spiritual Needs	p. 29
Make Use of Ritual	p. 29
Embrace Faith	p. 29
Question Beliefs	p. 29
Helping Families Understand Brain Death	p. 31
Talking With-Not At-The Family	p. 31
The Brain Death Conversation	p. 32
Explaining Brain Death	p. 33
Enhancing the Family's understanding of Brain Death	p. 37
Barriers to Understanding Brain Death	p. 39
Overcoming doubt and distrust	p. 39
The language barrier	p. 42
The emotion barrier	p. 43
The assumption barrier	p. 45
Exploring Options and Choices	p. 47
Continuing Your Care	p. 50
During: Caring for the Family through the Donation Experience	p. 55
Initiating the Donation Discussion: The Art and Science	p. 56
From Functionary to Facilitator: Beyond Consent to Genuine Support	p. 57
Components of the Donation Discussion	p. 60
Timing of the Discussion	p. 60
Location of the Discussion	p. 61
People Involved in the Discussion	p. 62
Structuring the Discussion	p. 65
Familiarizing yourself with the family	p. 66
Structuring the discussion	p. 67
Offering information	p. 68
Answering questions	p. 69
Summarizing	p. 70
Decision-Making at the End-of-Life	p. 71
End-of-care decisions	p. 71
Considering autopsy	p. 72
Choosing a funeral home	p. 73
Deciding when to leave the hospital	p. 73
Responding to the Family's Decision: Honoring Family Choices	p. 74
Leave-taking: Honoring Final Moments with the Person Who Has Died	p. 76
After: Caring for the Family After the Donation	p. 91
Emphasizing the Donor Families: The Importance of Honoring the Story	p. 93
Empathy Means Being Involved in the Feeling World of Donor Families	p. 95
Empathy Means Not Trying to ôFix Thingsö for Donor Families	p. 96
Dispelling Misconceptions About Grief	p. 96
Grief and mourning are the same	p. 96
There are predictable, orderly stages to grief	p. 97
We should avoid the painful parts of grieving	p. 97
We should ôget overö our grief as soon as possible	p. 98
Unique influences on the grief Experience	p. 98
The Circumstances of the Death	p. 98
Sudden and unexpected death	p. 99
Premature and untimely death	p. 99
Stigmatized death	p. 99
Violent and traumatic death	p. 101
The Nature of the Relationship with the Person who Died	p. 100
The Unique Characteristics of the Bereaved Person	p. 100
The Unique Characteristics of the Person Who Died	p. 101
The Family's Religious and Cultural Background	p. 101
The Ritual or Funeral Experience	p. 101
Common Responses to Grief and ôCompanioningö Helping Roles	p. 103
Shock, denial, numbness and disbelief	p. 103
Disorganization, confusion, searching and yearning	p. 103
Anxiety, panic, and fear	p. 105
Physiological changes	p. 106
Explosive emotions	p. 107
Guilt and remorse	p. 108
Loss, emptiness and sadness	p. 109
The Six Reconciliation Needs of Mourning	p. 110
Acknowledging the reality of death	p. 112
Embracing the pain of loss	p. 112
Remembering the person who died	p. 113
Developing a new self-identity	p. 113
Search for meaning	p. 114
Receiving ongoing support from others	p. 115
Reconciling Grief	p. 117
Development of a Family Support Project: A Working Model	p. 119
Determining Needs	p. 120
Establishing a Vision	p. 122
Program Development	p. 125
Selecting Resources and Materials	p. 128
Program Implementation and Evaluation	p. 131
Self-Care for the Caregiver	p. 132
The Bereavement Caregiver's Self-Care Guidelines	p. 133
The Joy of Mini-Vacations	p. 134
Work Smart, Not Hard	p. 135
Build Support Systems	p. 138
Remember the Importance of ôSpiritual Timeö	p. 139
Listen to Your Inner Voice	p. 140
A Final Word	p. 143
A Bill of Rights for Donor Families	p. 145
National Directory of Organ and Tissue Organizations	p. 149
National Bereavement Organizations and Support Groups	p. 151
Author Workshops and Trainings	p. 153
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