Grief & Bereavement

As donation professionals, we can help our families to identify and recognize the losses they have experienced during the past year, and we can validate them. We can also help donor families “name and claim” the grief that goes along with these losses. Giving voice and validation to what they are experiencing can be a way to enfranchise their grief and make it real. We can encourage families to find meaning in the losses; hopefully we are all able to connect with friends and family more this season than last, but remember how much our donor families may be carrying, and let them know we care.

Acknowledge the loss

This may seem obvious but it’s okay to acknowledge that the holidays will be difficult without the person who has died. It’s likely that friends and family members will avoid talk of the holidays or mentioning the loss. And for the grieving individual, that avoidance can feel hurtful and isolating. Say something. Normalize their experience. “This time of year could be really hard without having your husband around.” That simple sentence will open the door to a deeper conversation about the person who died and his or her family.

Ask about past holidays

During the authorization conversation, you’re likely going to ask the family to tell you about the potential donor. Ask them about how they celebrated the holidays last year. Or ask them if the potential donor had a special tradition or favorite holiday ritual. This will allow you to learn more about the family and their loved one and it will allow the family to reminisce and recollect, both important parts of mourning.

Support their plans

Some grieving families will share with you that that they plan to skip the holidays completely this year. Others will decide they need to recreate their loved one’s special holiday routines or traditions. Both are normal and totally acceptable. When a grieving family member shares their ideas for what they will do for the holidays, don’t pass judgment. Just let them talk.

Don’t wish them a “Happy Holiday”

Again, this might seem obvious but phrases like “Happy Holidays” come out of our mouths so easily during December. Be especially aware not to finish a conversation with this. Instead, you can wish them peace and comfort. You can tell them you hope they will be surrounded by people who love and care for them. Don’t just convey this with words. Pay special attention to your non-verbal communication. Eye contact, tone of voice and nodding your head all suggest your genuine holiday wish for them.

Give them a gift

Of course we don’t mean a gift you buy at a store. We mean the gifts of compassion, the opportunity of donation and a listening ear. We are often the one person who walks into their room of sadness and crisis while everyone is walking out. Bearing witness to their pain, allowing them to express their feelings and just being present is a gift.

A poem by Nancy Myerholtz hangs in our office so we never forget that we can give donor families “The Gift of Someone Who Listens.” Following is an excerpt:

It wasn’t the person with answers
Who told us of ways to deal,
It wasn’t the one who talked and talked
That helped us start to heal.
We need to always remember
That more than words we speak,
It’s the gift of someone who listens
That most of us desperately seek.

So as we get closer to the end of the year, don’t forget that for the families we interact with, this will be a December like none other. They may not remember your name but they will remember how you made them feel during the donation process. This is true all year round but around the holidays, everything is magnified. And for those of you who are working on the holidays instead of spending it with your family, thank you for your commitment to providing our donor families with the support and compassion they deserve.

Lara Moretti, LSW, CT is the Manager of Family Support Services at Gift of Life Donor Program in Philadelphia, PA; Emily Jauregui, LPC, CT is a Family Support Counselor at Gift of Life Donor Program in Philadelphia, PA

August 31 is International Overdose Awareness Day and September kicks off National Recovery Month. Now is an important time to acknowledge that mental illness and substance abuse touches us all in some capacity. Despite increased awareness of its widespread impact, both mental illness and addiction remain stigmatized throughout our society. As a result, grief associated with losing a loved one may be compounded when death ensues as a result of addiction.

Addiction is comprised of an entire series of losses that begin before the death. Often, the losses start when the individual first succumbs to substance abuse. Friends and family watch helplessly as the person they know and love transitions into someone completely unfamiliar. New undesirable behaviors, interests, and people enter into focus. Plans and expectations for the future no longer seem feasible. Trust may be challenged and likely broken. The dynamics of the relationship change or dissolve completely. Although the person in the throes of addiction is still physically present, friends and family may find themselves mourning the person they once were. It may feel strange to grieve someone who is still alive, but the associated emotions are real and valid. This common, yet confusing, experience has a name – ambiguous loss.

Family and friends often feel powerless when their loved one is under the control of addiction. They begin to prepare themselves and accept that this may invariably end poorly. Each of their loved one’s absences from a social gathering is a reminder of their potential void. Every time the phone rings, friends and family flinch and wonder if this is “the call”. The process of expecting the loss of a loved one is known as anticipatory grief. Many of the emotions of anticipatory grief (e.g., sadness, anxiousness, anger, regret) are the same feelings one may experience after a loss. Watching someone suffer through the illness of addiction while adjusting to the reality of losing them is exhausting. Often there is a sense of relief when the death actually occurs. Although this relief may seem wrong and may trigger feelings of guilt, this experience is quite common. It’s important to remember that this relief does not minimize the love for the person who died.

Surviving loved ones often feel as though their loss and grief is disenfranchised. Disenfranchised loss may arise when the circumstances of the death are stigmatized or possess negative connotations. Survivors may feel like they don’t have the right to grieve because society’s message is that their loved one’s death was preventable, shameful, or their own fault. They may feel as though they cannot openly mourn due to the constraints of “societal rules’ and keep their grief hidden. They may feel embarrassed or ashamed as they internalize cultural beliefs around addiction. But it is imperative to remember that no one has the authority to dictate who, how, what, when, or why we grieve. And as we recognize National Recovery Month, it is also important to remember that addiction is not a choice, it is a disease.

Jacqui Kates, LSW, CT is a Licensed Clinical Social Worker in Pennsylvania, a Certified Thanatologist (expertise in death, dying and bereavement), and former Support Services Counselor at Gift of Life Donor Program.

As healthcare professionals, we are taught how to deal with the medical, surgical, and immunological aspects of organ donation and transplantation. But we are rarely taught and often not prepared to deal with the unique emotional, social, and spiritual needs of potential donor families. However, as donation professionals, we have a responsibility of ensuring compassionate care during the painful journeys of these families and how to successfully companion them.

I recently read an article entitled “How to be Compassionate” by Rasmus Houggaard (a meditation and mindfulness expert who has studied with the Dali Lama and current CEO of Potential Project, which helps organizations to build more human and compassionate workplaces). Houggard and his colleagues looked at what compassion looks like in action and what skills one needs to develop it. They identified four skills as paramount: Presence, Courage, Candor, and Transparency.

Following is an excerpt provided by the app “Ten Percent Happier” that summarizes these four skills.

Caring Presence: Be Here Now

When we are present, we are in the moment and giving the people around us our full attention. Unfortunately this is not our default state. We are wired to be distracted. Mindfulness allows us to be present with others to tie in to what they are experiencing and may not be saying. This helps us to remember that the person in front of us deserves our respect, attention, care and curiosity.

Caring Courage: Courage over Comfort

Once we are present, we can choose courage over comfort. As human beings we are hardwired to embrace certainty and safety to avoid danger and discomfort. Compassion requires us to open up to others. It takes courage to tap into the difficult feelings we and they may be feeling. We find the inner strength to overcome being outside our comfort zone and open ourselves to emotions – ours and others to allow a connection to begin

Caring Candor: Direct is Faster

Having checked in with yourself and the other person the third step is caring candor. This means being direct and straightforward which is the fastest way to engage in a conversation. Caring candor allows you to deliver the message in the most kind and direct way which allows the other person to receive it quickly and for the real conversation to begin. It means being direct and decisive while remaining authentically open to other people’s perspectives and demonstrating care for their emotions and well being.

Caring Transparency: Clarity is Kindness

Caring transparency means getting ideas and thoughts out into the open; to make the invisible visible. When you are transparent, people know what is on your mind. When we start the journey towards greater compassion, we are present in our interactions with others and have the courage to show up with candor and transparency. When we present ourselves in this way it allows others to do the same.

Supporting and accompanying our donor families during the raw and tender time of donation is one of the most important responsibilities of the donation professional. From personal experience, it is also one of the deepest privileges.

Pamela Albert RN, BSN, CPTC began her career in donation and transplantation over 30 years ago and has had the opportunity to participate in many aspects of the process since then. At New England Donor Services, Pam has worked as a donation and hospital development coordinator, educational specialist, donor family liaison, aftercare coordinator, Director of Tissue Operations and Donor Family Services. She is currently serving as the Senior Director of Tissue Donor Services Resource Development and is responsible for ongoing authorization training for tissue operations staff as well as coaching and mentoring new leaders in the organization.

Pam has lectured across the country on topics relating to contact between donor families and recipients, as well as grief and loss issues in the workplace. Pam is published in both Progress in Transplantation and Critical Care Nursing Clinics of North America and received The National MTF Donor Family Care Award in 2000 for her work with donor families.

The personal qualities of those who choose to work in the OPO field—including empathy and dedication—combine with the unpredictable and demanding nature of the work itself to create a perfect storm. Your work can become your life and donor families can become “your” families.

When professionals don’t set appropriate boundaries, potential donor families underestimate their own coping skills and can become dependent. Families who help each other feel empowered, and this is very important to their recovery from acute grief. When they see us give too much, some family members will turn their energies to helping the helpers… clearly not in their best interests. When your relationship with them ends, as it must, this can constitute another loss. Setting professional boundaries can help them avoid this loss. Remember, we represent the worst time of their lives; encouraging families to move beyond those memories and any reliance on us contributes to their healing.

You are touched and changed by your experiences with families. Honoring your contact with them will help to give you closure and allow you to move forward. Take time to think about the deep human connection that often occurs; acknowledge it as an important part of your life as well as the family’s. Consider keeping a small memory book where you can enter the names of the people you’ve worked with, your hopes and wishes for them. And then turn the page, so that you’re ready for the next family. Make time with colleagues to talk about the human dimensions of your cases; consider creating a memorial to families at the office. In presentations, briefly acknowledge the courage and generosity of families, so that they are never only donation cases.

Finally, you must learn how to build your personal resilience. Identify strategies to deal with stressful events in the moment, including relaxation, stepping away, and seeking support. And perhaps, even more importantly, dedicate time and attention to your own well-being: exercise, healthy nutrition, time with family and friends. Put yourself on your own calendar!

Cherry Wise began working in the OPO field in 1997 when she had a private practice as a psychologist and was a professor at the Wright Institute of Professional Psychology in Berkeley. Previously she was director of a non-profit organization that provided services to children and their families in times of bereavement or impending loss.

At times of tragedy, parents and many professionals feel a strong impulse to protect children from what is happening. Usually, families are thinking about this decision for the first time, so it is valuable to share some of the following information about children’s grief. However, it is important not to expose children to experiences that they may be too young to understand and these recommendations will not apply to most children under the age of four years.

Children are typically very clear about their preferences; when they wish to say goodbye, with appropriate support, it is a constructive experience. Equally, a child who expresses reluctance should not be pressured.
Being left out can leave children with a lifetime of regret and recriminations, especially if the child has expressed a wish to be present.
Children’s fantasies about what they are not permitted to see are often much more gruesome and frightening than the reality.
Preparation allows the child to voice questions and fears and have them answered.

SUGGESTIONS FOR PREPARING A CHILD TO SAY GOODBYE

STEP ONE

Share information with the parents about the benefits of inclusion for children and describe the recommendations for preparing children. Offer your assistance but remember it is the parent’s decision to make. If parents do not wish to include their child, respectfully ask if there is any other way you can help.

STEP TWO

If parents accept your assistance:

Sit with the child and his/her parent(s) and explain the option to say goodbye in age-appropriate language. Assure the child that the doctors and nurses have done everything they can, but haven’t been able to make their loved one better.
Talk about the grown-ups being sad and upset… ask if that is hard.
Ask the child whether s/he would like to say goodbye; say that you and their parent(s) will be with them and that they can leave as soon as they would like to.
Use the “Some children…” technique to ascertain how they are feeling. (“Some children worry that it would be scary… what do you think?”)
If the child chooses to say goodbye, use age appropriate language and describe the room, equipment, smells, noises, and (most important) what their loved one will look like.
Check back with the child: “Now I have told you all about it, would you still like to say goodbye?”
Some children change their minds at this point. If this happens, reassure them that it is good that they are making their own decision and offer the options of drawing a picture or sending a message to their loved one.

STEP THREE

When children say “yes”:

Together with the parent(s) accompany the child into the room. It is important not to displace the parent(s) at this sensitive time. Additionally, it can be very helpful to parent(s) to hear how you talk with their child about painful topics.
Point out to the child the things that you described (see STEP TWO, FIFTH BULLET). Go through all the senses (what do they see? hear? smell? etc.). Ask what else they are noticing and whether they have questions.
Encourage them to talk to their loved one, to touch him or her as appropriate, and say goodbye.
Again ask if there are any more questions.

STEP FOUR

Essential final steps:

Sit down with child and parent and ask whether you did a good enough job of explaining everything. Did you leave anything out? Was anything worse than expected?
RESTORE THE LIVING MEMORY: Ask the child to tell you about a time they had fun with their loved one. Ask about ordinary details (but try to go through all the senses to reinforce the memory): What did they do? What did they eat? What was the weather like? What did it sound like? Smell like? Look like? (all the colors) Did they laugh a lot together? Say how wonderful it sounds and that you understand how much they will miss their loved one “but you will always keep them and these memories in your heart.”
To reinforce this message with younger children, make gathering motions with your hands (as though capturing memories) and pretend to put them in your heart.
Check with the parent(s) whether they have questions and ensure that they are comfortable with what has happened.

Most children welcome the opportunity to say goodbye to a loved one and, when thoughtfully planned and carried out, this can be a strengthening and healing experience. Just remember, that although we have learned from research and experience that most children benefit from inclusion, it is important to acknowledge that the loss of a loved one is outside a child’s normal range of experience.

Typical concepts of death and grief responses for the major developmental stages of children are outlined below. It is important to note that there may be overlap between the age groups.

Infancy to Age 2

Concept of Death: This age group typically does not understand the meaning of death, but infants have awareness of loss and separation. They react more to the emotional reactions of adults in their environment and to any disruptions in their schedule.

Grief Response: Babies may search for the deceased and become anxious as a result of the separation. Common reactions include: protest, a change in sleep habits, decreased activity and weight loss.

Preschool (Age 2-4)

Concept of Death: For this age group, death is seen as temporary and reversible. Preschoolers usually do not visualize death as separate from life and don’t see death as something that happens to them. Typical comments include: “When will my mommy be home?” “How does (the deceased) eat or breathe?”

Grief Response: Typically this group’s emotional response is brief but intense, as they tend to be present-oriented. Preschoolers are more concerned about altered patterns of care or about the emotional reactions of adults in their lives. Other typical responses include: confusion, night-time agitation, frightening dreams and regressive behaviors, such as bedwetting.

Early Childhood (Age 4-7)

Concept of Death: This group still views death as reversible. Children sometimes feel responsible for the death because of thoughts or feelings that they’ve had about the deceased, sometimes called “magical thinking.” “It’s my fault. I was mad at her, and I wished she’d die.”

Grief Response: Repetitive questioning about the death process is typical of this age group. “How?” “Why?” They may play act the death or the funeral as an attempt to work through their grief. They may behave as if nothing happened. Other typical responses include: anger, sadness, confusion, difficulty eating, sleeping or regressive behaviors, such as bedwetting.

Middle Years (Age 7-11)

Concept of Death: This age group may want to see death as reversible but they begin to see it as something final. They still don’t think of death as something that can happen to them or their family members, but instead to old people or very sick people. They may believe that they can escape from death through their own efforts. They also might view death as a punishment (particularly before age nine). Children in this age group may develop fears of bodily harm and mutilation, and may fear that other loved ones will die.

Grief Response: This age group typically wants to know very specific details about the death. They may become concerned with how others are responding to the death. They may act out their anger and sadness and may have trouble progressing in school. They also may have a jocular attitude about the death, or may withdraw and hide their feelings. Children at this age sometimes become overly concerned about their own health. Other typical responses include: shock, denial, sadness and regression.

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