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It has been suggested that by decoupling (also referred to as uncoupling or separating) the brain death and donation conversations, families have the time they need to begin to integrate the reality of the death (and the reality that brain death is death). Decoupling these conversations can be beneficial for families both immediately as well as later, after the shock and numbness has begin to fade and they begin to outwardly mourn the death. Research has also showed that this separation is one of the “modifiable factors” in the donation process, and when done well, this decoupling process may increase the chance that a family consents to donation. Certainly it makes sense that families are more open to consenting to donation once they are able to begin to acknowledge the reality of their loved one’s death.
When it is outline in a protocol uncoupling the brain death and donation conversations looks easy. But in the presence of a grieving family, a family who is distraught and desiring immediate answers to help them cope with their loss, uncoupling can be challenging. Some families may not allow you to separate the conversations, inquiring immediately following the death about the possibility of donation.
As a compassionate caregiver, remember to be flexible in your interactions with the family and follow the families lead. Allow them to teach you why it is important to them to move quickly into the donation conversation rather than diving into this simply because they brought it up. Even if they are discussing donation, you can uncouple the conversations and help them with their integration by intentionally helping them slow down, ask questions, and reflect to you what they understand about brain death. If you or the family quickly move through the conversations at this critical time, the family is deprived of the opportunity to slow down and begin to integrate the death fully and may begin to have questions or doubt surface later in their grief process.
Take a moment to reflect on a time when you witnessed a family being notified about the death of someone loved. Who did most of the talking? Did the family actively participate in the conversation? Often a great deal of miscommunication occurs when a family is talked at or talked to. Talking WITH rather than AT the family opens up a new door to communication. This allows you to facilitate (“to facilitate” literally means to “make easier”) the conversation rather than dominate it.
As you begin to spend this time talking with survivors and allowing them to participate in the conversation, you will find that you learn more about a family’s willingness to listen, their ability to comprehend what you are saying, and gaps that exist in their understanding.
For example you might say to the family, “I understand this is a difficult time for you. Because I haven’t been here with you through all of this, can you help me understand what’s happened with Paul since you’ve been here?”
Understanding and acknowledging brain death may be one of the most difficult tasks for families during this time “before” organ donation is discussed. Although it is relevant only for families of potential organ donors, it is such an integral part of the donation experience that we feel it requires a great deal of understanding. As caregivers, one of the greatest challenges is helping families understand the finality of this type of death. In part, this is difficult because the family continues to see what appear to be signs of life even after they are told their loved one is dead.
Even the use of the term “brain death” may create confusion for families. Consider for a moment the young woman who is told her husband died suddenly from a heart attack (not from brain death). Everything was done in an attempt to save his life. She asks to see him, to say goodbye, and as she stands near his bedside, there is no mistake that this is his lifeless body and that he is no longer alive. By contrast, when someone is brain dead and on a ventilator, the heart continues to beat, the chest rises and falls, and the skin is warm to the touch. All the vital signs of life are present for hours, sometimes days following declaration of brain death. Is it any surprise that some families hold onto hope that the person will survive even after the diagnosis of brain death is made?
Communication skills during this time are critical as you try to help the family understand that when the brain dies, the person dies. The content of the conversation as well as the way information is presented can certainly impact a family’s understanding. The brain death conversation is more than simply defining brain death for a family.
Your ability to recognize, normalize, and respond to a family’s spiritual needs can greatly impact the overall donation experience.
Making Use of Ritual
Words cannot adequately express all that is felt as a family confronts and acknowledges the death of someone loved. Providing opportunities for families to participate in end-of-life rituals during this time will facilitate their need to outwardly express their grief.
Ask them if they would like a chaplain or clergy member to be with them or to assist them in creating a leave-taking ceremony. Invite the family to integrate rituals that are culturally, religiously, and spiritually meaningful to them. Honor the bereaved family’s need to create final, sacred moments with the person who has died. These moments may be spent as family and friends gather around the bedside to pray together. A family may desire time alone in which to invite one another to reflect and reminisce about the person who has died. A family may choose to engage in a silent ritual such as a candlelight vigil or a final precious hour holding the person in sacred silence.
Opportunities to Embrace Faith
Families enter this experience with a variety of beliefs about religion and spirituality. These beliefs often influence the family’s view of death and donation. Allow the family to teach you what they believe about the afterlife or a higher power. Discover the ways in which faith beliefs influence their views of death and donation. If faith is important to the family, allow them to express it in ways that are appropriate and meaningful for them. Their beliefs may be much different than your own. Listen without judging. Remember also that having faith does not mean this family shouldn’t hurt. Faith doesn’t eliminate the feelings that accompany loss. Compassion and caring means providing opportunities for families to express their faith as well as their grief.
Permission to Question Beliefs
When someone loved becomes ill, is seriously injured, or dies, it is natural for families to question their beliefs about their safety in the world, life’s purpose, the benevolence of a higher being, and the afterlife. Family members may displace feelings of anger on family, hospital staff, or God. Encourage the person to talk about these feelings of anger, fear, and uncertainty.
There are so many questions and so few answers for the family. Often “why” questions will precede “how” questions posed by the family. The family may ask, “Why is this happening to us?” and “How am I ever going to get through this?” Faith-based questions such as “Is this God’s will?” or “Is she with God now?” are not uncommon. There are no simple, straightforward answers to any of these questions. As caregivers, the most you can offer is a listening ear, an open heart, and a willingness to explore the questions with them
Quick self-check-in: What are some of the spiritual needs I see that families have and what am I doing to help with these?
Editor’s Note: This is the third of a three-part story shared by Tony and Bonnie Redfern of Kingsburg, California, as they struggled through the experience of their son Scott’s death and organ donation. The Redferns can be contacted through their nonprofit, New Path Center, at www.newpathcenter.org, dedicated to helping families and communities discover pathways through difficult times.
After: The Search for Meaning and Reconciling Loss
Scott William Redfern: 11/23/79 - 2/6/96
During the next few days we received calls from the organ donor network updating us on the progress of the organ transplants. Because of extraordinary circumstances, we also learned through the media of one of Scott’s organ recipients. We started to hear a new vocabulary. There was talk of organ “harvesting” and that the “prayers of the recipient’s family had been answered.” Although the organ donor network personnel were kind and helpful, we found through the media that Scott had lost his identity. All of a sudden he was no longer human. He was now a “cadaver” with body parts available to needy people who had been waiting for an available organ. There was a spirit of celebration as each potential recipient moved up the list. What they didn’t seem to recognize is that with each movement to be the next-in-line, someone died to make that happen. The reality is, when that donor died, the “cadaver” left behind a grieving and hurting donor family who lost a loving member of their family.
After the last transplant report came in, we waited for the responses of Scott’s four recipients. Although we could not know the names and identities of the recipients, we were told that we could expect a note of thanks from them. We waited weeks, months, and years without hearing anything. We finally wrote a letter to the organ donor network asking if they had received any word from any of Scott’s recipients. With our urging, the donor network encouraged one recipient to write a note of thanks. The network sent this one very special note of gratitude. It is the only one we received, and we cherish the letter even to this day.
All in all, our experience as a donor family was good, but it could have been more enriching for us, enhancing our memory of our last moments with our son. It would have been good to know the options that would have helped us on our grief and mourning journey.
Your ability to recognize, normalize, and respond to a family’s social needs can greatly impact the overall donation experience.
Supportive Presence
Families share and outwardly express painful feelings associated with the loss as they begin the work of mourning. Recognize that even as a family shares this intimate experience with you, you are not the “lone caregiver.” Others around you also have the capacity to offer comfort, care, and support to the bereaved. As you allow and even encourage a family to invite others—extended family, close friends, clergy, and hospital staff—into the experience, you communicate that this is an acceptable and healthy way to cope with the painful loss. Grief and loss are not to be handled alone and in isolation. With your help, families can begin to experience the caring of others and the supportive love they have to offer during difficult moments very early in their grieving.
Support from Other Bereaved Families
When possible, a family may find comfort in connecting with another bereaved family during or after their experience with donation. A family who has experienced the heartache of loss and grappled with the decision to donate may be a source of comfort and hope. A newly bereaved family may find greater comfort in sharing fears, questions, concerns, and hopes with a family who has been where they are.
Quick self-check-in: What are some of the social needs I see that families have and what am I doing to help with these?
Editor’s Note: This is the second of a three-part story shared by Tony and Bonnie Redfern of Kingsburg, California, as they struggled through the experience of their son Scott’s death and organ donation. The Redferns can be contacted through their nonprofit, New Path Center, at www.newpathcenter.org, dedicated to helping families and communities discover pathways through difficult times.
DURING: The Need to Have a Positive Experience
As we waited for the final blood flow test to be completed, we recognized that decisions would need to be made. No one from the hospital approached us regarding organ donation at this time. We asked our brother-in-law, who works in crisis intervention, to help direct our thoughts regarding potential organ donation. Realizing that the fight for life would not be won, our focus changed to a fight for value, that some good might come from our tragedy.
Scott William Redfern: 11/23/79 - 2/6/96
Once the reality of brain death was confirmed, we made our intentions regarding organ donation known to hospital personnel. Within an eerie few minutes, a representative from the donor network was introduced to us. It seemed he had been waiting in the wings. We were led into a makeshift conference room, cluttered with boxes, linens and supplies. You would think they would have had a special place to do this kind of sacred work. We asked our eighteen-year-old daughter, Amy, (who had flown in from college) and both our brother and brother-in-law to come in with us. The donor network representative asked the lead nurse to join us, too, as a witness.
Even though we believed this was what we wanted to do, when we were faced with the forms and releases, and listened to the discussion of how parts of our son’s body would be given away, we became physically and emotionally anxious. As nausea flowed over us, the donor representative became aware of the physical changes taking place in us. He quietly and respectfully closed the folder and invited us to share our feelings, questions and concerns. Giving us the gift of time—to express our fears, to have our loss honored— gave us the security that this was our decision, and we were able to regain some control of our bodies and emotions.
Once the forms and releases were signed, our role in this decision was done. The hospital personnel did the rest of the work. We said our last good-byes to Scott. He was breathing. His heart was beating. He was warm to the touch. He even “reacted” to certain stimulus. Even so, we were told that his reactions were only spinal cord reactions and that they didn’t mean anything. He was gone.
How we wanted to hold him one last time, but we were afraid we would somehow “hurt” the remaining life that was in him and somehow jeopardize the transplant successes. Instead, we said good-bye, kissed him and walked out of the hospital with the hospital staff looking on in quiet, somber respect. We drove home to an immediate empty-nest.
We now wish that we had been told of some possible options available to us during our leave-taking. We would have benefited by being told we could have spent some time with Scott’s body after his organs were removed. We never knew about that option. We wished we had some final ceremony at the hospital to honor Scott’s gift. We wish we could have met the doctors who performed the organ removals. We would have benefited from being more involved in the transplant process. We believe that having a different leave-taking experience may have helped us achieve reconciliation with the reality of brain death. We never saw our son “looking” dead. Unfortunately, we struggled for months with the issue of “Was he really dead?” We continued to struggle with whether or not we made the right decision to accept brain death.
Your ability to recognize, normalize, and respond to a family’s cognitive needs can greatly impact the overall donation experience.
Information About the Injury, Prognosis and Declaration of Death
A grieving family can only deal with what they know, not with what they don’t know. Naturally, a family will desire to know what has caused the injury, how the injury is being treated, who is in charge of the care, and what the chance is that their loved one will survive. They will want to share this news with other family members and friends who are concerned and awaiting a call. When possible, be available to the family as they relay this information to concerned others. Perhaps the family will call on you to assist them with this task to ensure that what is being said is accurate and consistent. Your patience and openness during this time will also help the family as they slowly begin to acknowledge the reality of the irreparable injury, the unfortunate prognosis, and eventual death.
Information in “Doses”
Information is a source of power for families during a time when they have so little control over the outcome of the situation. You may be concerned that the family is receiving more than they can handle during a time of suffering and stress. Therefore, providing consistent and accurate information and encouragement in “doses” can help temper the cognitive demands on families during this experience.
How will you know if a family is experiencing “information overload?” The family’s capacity to take in information will depend on several factors:
Agitation, irritability, and frustration during conversations may signal that the family feels bombarded with information and is in need of a few moments (or hours) of respite.
Choices and Options
Many families may feel immobilized as they observe others caring for the injured or person who died. In an effort to reestablish some sense of control over the situation, ensure that each family is informed of all options available to them throughout their time at the hospital. This includes options to help nursing staff, even in small ways, as they care for the patient. At the end-of-life this includes the family’s option to donate organs, tissue, or eyes when appropriate, to withdraw ventilator support, to remain at the hospital until the recovery is completed, or participate in a meaningful leave-taking ritual.
Quick self-check-in: What are some of the cognitive needs I see that families have and what am I doing to help with these?
Your ability to recognize, normalize, and respond to a family’s emotional needs can greatly impact the overall donation experience.
Time with the Person Who Died
It is a natural instinct for some families to need to be with the body of the deceased. Spending time with the body can facilitate the integration of this new reality for the family. It can help make the unreal real. Some families may desire to stay at the bedside, while others may spend very little time in the hospital room. Respecting any decision made by a family and withholding judgment of those who choose to distance themselves from the person who died are ways of demonstrating compassion and care.
Permission for frequent visitation will create an open invitation to the family to spend the amount of time with the person that is right for them. Take time to discuss fears and concerns the family may have about seeing the person, particularly when you notice they are completely avoiding contact with the person who has died. Perhaps they are afraid of what they will see or that this will leave them with a disturbing memory. This may be an opportunity for you to offer some information and guidance. Providing a description of the hospital room, the condition of the body and the injuries, or accompanying the family into the room may be helpful.
Time Alone
Privacy is important during these intimate moments, and we must respect a family’s need to be alone with the person as well as to be alone with themselves. Their ability to withdraw from the situation may lessen some of the distress they are feeling as a result of the multitude of sounds and activities surrounding them. Suggest a quiet, safe area where they can go for a while when they feel the need to escape.
Permission for Emotional Expression
The death of someone loved is an emotional experience, and families need a safe place to express emotions during this time. It would not be unusual to see family members crying, hugging, shouting, arguing, and even laughing at times. The family may spend time reflecting on the life of the person, his personality, his interests and his accomplishments. For some, emotional expression will be reserved for times when they are alone, while others will find comfort as they mourn in the presence of family, friends, and caregivers.
Help the family to find a place that feels safe for them. Safe havens for the expression of emotion might include the chapel, a private waiting room, or the patient’s bedside. When expression is not done here, but instead in a more public area such as the hallway or the nurses’ station, we may immediately feel the need to quiet the person or family. Recognize that quieting a family may be done out of our own fears or feelings of helplessness. However, when these bursts of intense emotion are disturbing to other patients and families, it is difficult to allow a family to continue.
Remember, if you move too quickly to silence the family, you may send the message that their behavior is abnormal and extinguish their willingness to express these difficult emotions. Instead, honor the family’s willingness to express their grief and pain. Help them to find a place where they feel less “exposed” while also reassuring them that their feelings are a natural response to this experience.
Observing “Good Care”
In the eyes of the family, “care” given to the injured or person who died includes not only the medical treatment received, but also the gentleness, respect, and concern shown to the body as medical treatment is provided. Family members seek reassurance throughout their time in the hospital that everything possible is being done to save the person they love. For some families, the monitors and equipment that fill the room make a clear statement that all efforts are being made. Other family members will find comfort in words of reassurance from nursing or medical staff. The body of the person who is injured or has died is sacred. Conveying respect, dignity, and compassion to the body even after the death has occurred (be it brain death or cardiac death) is important to the bereaved family. The gentleness with which you move or turn the person’s body and calling the person by name are practical ways of demonstrating “good care.”
When the patient is brain dead, the machines may be continued for a period of time while the family is making several end-of-life decisions. At this time, family members may be curious about the purpose of the machines and what appears to be a continuation of care being given to the patient after the person has been pronounced dead. Invite these questions. Although these will be answered in due time, when end-of-life options are discussed, take time to comfort the family with the gift of knowing the answers now.
Opportunity to Take an Active Role
Throughout the hospital experience, families may desire to participate in the care given to their family member. Feeling that they somehow are able to contribute and participate in the care may be important to some families. You may find that as you show them that it is OK to touch the person’s body, brush her hair, or move her to a position that appears more comfortable, the family will begin to assist you and perhaps find new ways of demonstrating their love and caring for the person.
Encourage families to participate in ways that feel comfortable for them. For some this may be taking an active role to start a prayer chain or asking questions of the physician and nurses that others are afraid to ask. Others will find it comforting to read to the person, assist with bathing or turning the person, or arrange the flowers or cards in the room. We have found that many families take comfort in observing or participating in “tangible rituals” that can take place during this time. Creating handprints, clipping a lock of hair, and gathering significant linking objects and placing them in a memory box are just a few of the rituals you can offer to families, regardless of the age of the person who died.
For some donor families, the decision to donate gives the family more time with the person’s body. Organ donor families are often given additional time with the body while the medical team is completing their medical evaluation of the organs and locating potential organ recipients prior to the recovery. Not all families will choose to stay at the hospital during this time, but those who do need your continued support. At a time when there is little they can say or do to change the circumstances, there is often a high need to be “doing something useful.” You may help the family to meet this need to take an active role by suggesting what other families have done during this time.
Guidance or Permission to Do the Unthinkable
Some of the families you encounter will have no experience facing the death of someone close to them. Never having done this before, they may at times need guidance or reassurance that what they are doing is appropriate and normal. Give them permission to do and say those things that need to be done and said. These may be some of the most difficult moments for you as a caregiver to witness. You may feel uncomfortable or uncertain of whether the wishes of the family are “appropriate” at the time of death. It may seem odd that a family wants to take photographs of the person who has died, hold or read to their child, or crawl into bed with their spouse. There is nothing wrong with holding on to this memory, this moment.
Encourage families to embrace these moments and take opportunities to create final memories that they will carry with them for a lifetime. The greater injustice would be for us as caregivers to discourage or prevent them from engaging in these meaningful and comforting moments.
Quick self-check-in: What are some of the emotional needs I see that families have and what am I doing to help with these?
