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 sectionsbefore, during, and after the donation experienceguarantee that caregivers can easily access the section most relevant to their role with the family.
|Edition description:||Second Edition, Second edition|
|Product dimensions:||6.00(w) x 8.90(h) x 0.50(d)|
About the Author
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.
Read an Excerpt
Caring for Donor Families
Before, During, and After
By Raelynn Maloney, Alan D. Wolfelt
Center for Loss and Life TransitionCopyright © 2010 Raelynn Maloney, Ph.D. and Alan D. Wolfelt, Ph.D.
All rights reserved.
CARING FOR THE FAMILY FROM THE BEGINNING ...
As the family's journey begins, we, as caregivers, seldom realize the remarkable opportunity before us. Each time we enter into a helping relationship with a newly bereaved family, we accept their invitation to share in one of their most personal and deeply felt life experiences. Without even realizing it, we become a part of one of the most intimate experiences between the person who died and his or her family and friends. If we choose to enter fully into their experience, we have both a privilege and an obligation to make the moments they have with the person who has died as meaningful and satisfying as possible.
To companion someone who is bereaved means to walk with them, not in front of them or behind them. In fact, the word companion can be broken down into its original Latin roots: com for "with" and pan for "bread." Someone you would share a meal with. A friend. An equal.
Co-Creating A Meaningful Experience
Whatever your professional role (procurement coordinator, donor family coordinator, social worker, clergy, nurse, or physician), for purposes of this book and the subject matter covered herein, we are asking you to think of your role as one of companion and advocate to the newly bereaved family. In other words, it is your job to help them through the donation process and to make the experience as positive and meaningful as possible for them given these difficult circumstances.
If you are a companion to bereaved families, you seek to learn from them instead of focusing on being the expert. Yes, you may have the expertise to teach them about brain death, about their options for donation and about the recovery process, but it is they who will teach you what this death is like for them, what brain death and donation mean to them, what needs they have during their time at the hospital and beyond, and how you can truly help. This "teach me" attitude should guide every moment you spend with the family.
Companioning families can also mean helping transform the donation process into a memorable and meaningful experience. If you and your team work together to companion bereaved families, the family will feel respected and nurtured. They will discern that their thoughts and feelings truly matter, before, during, and after the decision regarding donation. They will not feel as if you were only interested in gaining their consent to donate. They may even invite a level of spirituality into this life-changing experience in a way they never have before, particularly if you help them make use of the leave-taking rituals discussed in this book.
Who Are Donor Families?
In the broadest sense, a "donor family" is any bereaved family who has made the decision to donate organs, tissues, or eyes from a family member who has died.
There are occasions when a family has agreed to donate but organs and tissues are not recovered or are unable to be transplanted. These families, because of their decision to donate, are also donor families. Despite the outcome of the donation, the families' intention and experiences that led them up to the donation decision is what creates a multitude of special needs that you as a caregiver can assist with.
Understanding The Family's Initial Responses
The family's journey begins long before they are recognized and referred to as a "potential donor family." The family begins their journey in a state of crisis, concerned and hopeful that someone they deeply love will pull through and survive no matter how horrendous the injury. From the moment they step into this experience with death, whether it is at the hospital or they are notified by telephone, each family deserves the supportive presence of caregivers who understand grief and the needs of newly bereaved families.
Those In Need
Currently, more than 108,800 people in the U.S. are waiting for a life-saving organ transplant.
Every 10 minutes a new name is added to the national waiting list for organ transplants.
An average of 18 people per day die in the U.S. while waiting for a transplant because an organ is not available in time.
In 2009, an estimated 28,465 recipients received organ transplants.
Those Who Give
Each year thousands of families are offered the option to donate the organs, tissues, and eyes of someone they love who has died.
In 2009, approximately 8,021 families were able to donate their family member's organs for transplantation.
These donations made by these families provided 28,465 patients with the organ transplants they needed.
Some of these donor families are now survivors of suicide and homicide, which can complicate the families' grief process significantly.
Sources: Coalition on Donation (www.shareyourlife.org) and United Network for Organ Sharing (www.unos.org), 2010
Regardless of how similar the circumstances, no two families will respond to crisis, trauma, and death in exactly the same way. Your ability to offer compassion and support to each family (and each family member) will depend a great deal on your personal awareness and beliefs about grief. Your beliefs about grief will influence the assumptions you make about the appropriateness of a family's reaction to various aspects of the death and donation process.
When you first encounter the family in the hospital, remember you are entering their lives at an incredibly difficult moment. Someone they love has just been involved in a sudden accident or has suffered an unexpected injury and is teetering on the brink of death. Does life get any harder than this?
Fortunately, nature has ways of helping people survive these exceedingly difficult moments. Shock and its cousins denial, numbness, and disbelief are nature's way of temporarily protecting people from painful realities. These normal, natural, and necessary feelings help people survive when life seems unbearable.
During this time you may hear families say things like, "I can't believe this is happening." "This can't be ... I just talked to him this morning." or "This just seems like a bad dream." These types of statements are expressions of the family's shock and numbness. Through these responses, the family is teaching you that their emotions need time to catch up with what their mind has been told. During early discussions about their loved one's prognosis, for example, the family may initially push away the reality that the person may die. They may reside in complete and utter disbelief for hours.
Try These Supportive Helping Skills
Whenever possible, give the family members time to process this news and let the reality of the prognosis or the possibility of death sink in.
Remember, numbness and shock are natural and help the family as they are trying to integrate the reality of this devastating loss.
Don't try to hurry them in these early moments into leaving the hospital, making funeral arrangements, or making significant end-of-life decisions.
We often want to help families through this by getting through it quickly, but what the family really needs is for you to simply be present and available to answer questions.
Give the family permission to move along at a pace that will allow them to embrace this new reality, a reality that will change their lives forever.
This shock and disbelief are often accompanied by feelings of confusion and an inability to concentrate. At times, you may find that you are answering the same questions again and again. The family may ask you to repeat basic information several times. They may forget your name even though you've told them more than once. Their attention may wander.
These are normal and necessary responses when the mind tries to process a new and devastating reality. It's as if the brain responds by becoming a filter, allowing drips of information in instead of a flood that might sweep away sanity.
Try These Supportive Helping Skills
Be patient with families who seem confused and unable to focus.
Speak slowly and clearly, using simple language and short sentences.
Repeat information as necessary without communicating the sense of impatience you may feel.
The family's initial responses may also include anxiety, panic, and fear. Like most of us, they may fear death and its aftermath. They are often panicked about the prospect of life without the person they love. They may also be fearful of the machines that are keeping the body and organs viable as well as the experience of being within a hospital environment. Panic may set in when they realize that they may have to make the irreversible decision to remove the person they love from the "breathing machine" (the ventilator). For some family members, the body's autonomic nervous system also takes over, sometimes causing heart palpitations, queasiness, stomach pain, and dizziness.
Try These Supportive Helping Skills
You can help by being a calming and reassuring presence.
Offer comfortable seating for the family.
Bring them water.
Take them outside for some fresh air if you think it would help.
Let them know that these physical reactions are normal.
Anger and other explosive emotions are common, too, among families in crisis. Because the injury may have been the result of a sudden and violent act, it is normal for some family members to be angry, sometimes extremely angry. Some of this anger may be directed at you or the hospital staff at times. Don't take this personally and help the family by being tolerant of their fluctuating emotions.
In an attempt to understand how and why this is happening, the family may feel the need to place blame. If the person was injured in a car accident, the family may have feelings of rage toward the drivers involved, for example. If the person attempted suicide, the family may be angry at the person or at themselves for having failed to prevent the act of taking one's own life (even though, as we know, they could not have). The family may also, at times, place blame on the healthcare team for not doing enough to save the person's life.
He wouldn't have wanted you to be sad.
You'll become stronger because of this.
It was God's will.
Crying won't make him come back.
God only gives you what you can handle.
Be glad you had him for so many years.
He's in a better place.
I understand how you feel.
You can make meaning out of this through donation.
I'm here to help in any way I can.
Is there anyone I can call for you?
Would you like to talk to a clergy person?
The staff and I are here to help you.
This is really difficult.
I am truly sorry you are going through this.
Is there anything you need?
If I am giving you too much information at once, just tell me.
When a family expresses anger, you can help by listening without judging. This is difficult for many people because anger often makes us very uncomfortable. Feelings of hatred, resentment, blame, guilt, remorse, and regret are not bad or good — they just are. Allow the family to yell, sob, pace, or do whatever they need to do (without hurting someone else, of course) to release these powerful emotions. Explosive emotions must be expressed, not repressed. Don't ask the family to calm down or tell them that such expressions are inappropriate. Help them find the safest place to release these emotions openly.
Of course, profound sadness is at the bottom of all these emotions. While it can be difficult to accept the anger expressed by family members, it can also be difficult to bear witness to their pain in the form of sadness. Yet, as we will discuss in the AFTER section of this book, helping the family embrace the pain of the loss is a critical need of mourning. This is not a time to offer platitudes or use euphemisms in an attempt to blunt the pain.
You may feel profound sadness yourself as you spend time with bereaved families. As a caregiver you may vicariously experience some emotions that are similar to the families'. This is particularly true when the loss has some close associations to any of your own personal losses or life experiences. If you are feeling emotional, it's OK for you to express your sadness, to cry, to offer your sincere sympathy, to talk to coworkers and your family about your feelings.
To be empathetic to the grief of others means, on some level, to grieve the death yourself. Allow yourself to feel your feelings in the family's presence. They will sense your genuineness and trust will blossom. Be sure not so put so much emphasis on your feelings that it detracts from the family's experience. You may need to work through some of your own emotional experience with colleagues later, when the family is no longer present.
The Special Immediate Needs of the Donor Family: Physical, Emotional, Cognitive, Social, and Spiritual
The death of someone loved creates special needs for all families. Just as no two losses are experienced in exactly the same way, no two families will have exactly the same needs as they encounter the pain of losing someone they love. During this time, bereaved families not only grieve uniquely, they often need uniquely as well. The exclusive opportunity for some families to donate their loved one's organs, tissue, or eyes creates a new set of needs for the family during this death experience. As a caregiver, your sensitivity, knowledge, and skill in meeting these immediate needs is critical to the family's long-term response to grief.
While there may be some commonalities, each person will have needs that are as unique and individual as their grief. Naturally, there will be circumstances you cannot control that greatly impact grief responses, such as past loss experiences, past and present coping styles, availability of external support, and cultural/ethnic background (see the AFTER section for more on the uniqueness of the grief response). What you can control, however, is the sensitivity and compassion that is shown to families as they teach you what their unique needs are during this time. Your ability to recognize, normalize, and respond to a family's requests can greatly impact the overall donation experience.
You may find yourself with a family who has trouble articulating or is uncertain of their needs. Keep in mind that the impact of losing someone loved is felt on every level of their being — body, mind, and soul — and their needs during this time span each of these dimensions. Physically, they become weary; emotionally, they are overwhelmed; cognitively, they become confused; spiritually, they are questioning all they thought to be true.
Outlined below are several potential needs of families as they begin their grief journey. We remind you to look to the family to guide you toward what is most appropriate, comfortable, and essential to them during this time. As the family teaches you what is important to them and you help facilitate their requests, you begin to co-create what may become a very affirming and meaningful donation experience.
Nourishment/Bodily Care — During this "before" time, the survivor is focused on the person who is injured or has died. Taking care of one's self naturally becomes less of a priority. As a caregiver, you have the opportunity to help by encouraging the family to listen to what their bodies are telling them — drink plenty of fluids, eat when they are hungry or begin to feel weak, rest when they tire. A change of clothes and a shower can make an incredible difference. If possible, make food and drink available in the waiting area or have a map available for them illustrating where they may find bathrooms, showers, vending machines, telephones, the cafeteria, outside sitting areas, play areas for children, local restaurants and hotels.
Proximity to the Person Who Died — The opportunity for closeness to the person who is injured or has died is important during this time. In your helping role, you may, when possible, make room for the family in a waiting area close to the medical care unit. Honor a family's need to see the injured person as soon as possible after they arrive. For many, this will allow them to let the person know or feel they are "there." Even after the initial contact, frequent visitation and permission to touch, hold, and talk to the person may help to meet this important family need.
Excerpted from Caring for Donor Families by Raelynn Maloney, Alan D. Wolfelt. Copyright © 2010 Raelynn Maloney, Ph.D. and Alan D. Wolfelt, Ph.D.. Excerpted by permission of Center for Loss and Life Transition.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Before: Caring for the Family from the Beginning 11
Co-Creating A Meaningful Experience 11
Understanding The Family's Initial Responses 12
The Special Immediate Needs of the Donor Family 18
Physical Needs 19
Nourishment/Bodily Care 19
Nearness to the Person 20
Physical Safety 20
Emotional Needs 21
Time with the Injured Person 21
Time Alone 22
Permission for Emotional Expression 22
To Observe "Good Care" 23
To Take an Active Role 23
Guidance or Permission to Do the Unthinkable 24
Cognitive Needs 26
Information About the Injury, Prognosis, and Declaration of Death 26
Information in "Doses" 26
Choices and Options 26
Social Needs 27
Supportive Presence 27
Support from Other Bereaved Families 28
Spiritual Needs 29
Make Use of Ritual 29
Embrace Faith 29
Question Beliefs 29
Helping Families Understand Brain Death 31
Talking With-Not At-The Family 31
The Brain Death Conversation 32
Explaining Brain Death 33
Enhancing the Family's understanding of Brain Death 37
Barriers to Understanding Brain Death 39
Barrier #1 Overcoming doubt and distrust 39
Barrier #2 The language barrier 42
Barrier #3 The emotion barrier 43
Barrier #4 The assumption barrier 45
Exploring Options and Choices 47
Continuing Your Care 50
During: Caring for the Family through the Donation Experience 55
Initiating the Donation Discussion: The Art and Science 56
From Functionary to Facilitator: Beyond Consent to Genuine Support 57
Components of the Donation Discussion 60
Timing of the Discussion 60
Location of the Discussion 61
People Involved in the Discussion 62
Structuring the Discussion 65
Familiarizing yourself with the family 66
Structuring the discussion 67
Offering information 68
Answering questions 69
Decision-Making at the End-of-Life 71
End-of-care decisions 71
Considering autopsy 72
Choosing a funeral home 73
Deciding when to leave the hospital 73
Responding to the Family's Decision: Honoring Family Choices 74
Leave-taking: Honoring Final Moments with the Person Who Has Died 76
After: Caring for the Family After the Donation 91
Emphasizing the Donor Families: The Importance of Honoring the Story 93
Empathy Means Being Involved in the Feeling World of Donor Families 95
Empathy Means Not Trying to "Fix Things" for Donor Families 96
Dispelling Misconceptions About Grief 96
Misconception #1 Grief and mourning are the same 96
Misconception #2 There are predictable, orderly stages to grief 97
Misconception #3 We should avoid the painful parts of grieving 97
Misconception #4 We should "get over" our grief as soon as possible 98
Unique influences on the grief Experience 98
The Circumstances of the Death 98
Sudden and unexpected death 99
Premature and untimely death 99
Stigmatized death 99
Violent and traumatic death 101
The Nature of the Relationship with the Person who Died 100
The Unique Characteristics of the Bereaved Person 100
The Unique Characteristics of the Person Who Died 101
The Family's Religious and Cultural Background 101
The Ritual or Funeral Experience 101
Common Responses to Grief and "Companioning" Helping Roles 103
Shock, denial, numbness and disbelief 103
Disorganization, confusion, searching and yearning 103
Anxiety, panic, and fear 105
Physiological changes 106
Explosive emotions 107
Guilt and remorse 108
Loss, emptiness and sadness 109
The Six Reconciliation Needs of Mourning 110
Need 1 Acknowledging the reality of death 112
Need 2 Embracing the pain of loss 112
Need 3 Remembering the person who died 113
Need 4 Developing a new self-identity 113
Need 5 Search for meaning 114
Need 6 Receiving ongoing support from others 115
Reconciling Grief 117
Development of a Family Support Project: A Working Model 119
Phase 1 Determining Needs 120
Phase 2 Establishing a Vision 122
Phase 3 Program Development 125
Phase 4 Selecting Resources and Materials 128
Phase 5 Program Implementation and Evaluation 131
Self-Care for the Caregiver 132
The Bereavement Caregiver's Self-Care Guidelines 133
The Joy of Mini-Vacations 134
Work Smart, Not Hard 135
Build Support Systems 138
Remember the Importance of "Spiritual Time" 139
Listen to Your Inner Voice 140
A Final Word 143
A Bill of Rights for Donor Families 145
National Directory of Organ and Tissue Organizations 149
National Bereavement Organizations and Support Groups 151
Author Workshops and Trainings 153