By Jessica Curd, LCSW
Children are not supposed to die. It flies in the face of
expectations we have of the natural order.
And yet, it happens. Sometimes the death is sudden and sometimes it is
from life limiting illness. As a hospice social worker, I had the honor of supporting
dying children and their families. Losing a child can be particularly complex –
in anticipating death, there is still a hope and wish for children to improve
and endure. There are other avenues of hope in death, however, and it was a
dying child and her supportive doula that helped me see aspects of hope even in
the face of death.
Children, even when dying, are brave, vulnerable, and full
of life, humor, and love. They are raw and real and openly share their thoughts
and feelings, and are often more prepared for their death than their parents,
helping to support and prepare family and friends.
One family I remember well had three adopted children, two
of whom had terminal illnesses. They had fostered these little ones and endured
the arduous process of adoption, combined with learning all the aspects of care
their children would need, often through long hours of the night. One decision
they made early on was to reach out to an end-of-life doula, who they heard
about at their church just weeks prior to one of their children being referred
to hospice. This decision ended up making all the difference for them.
Sam’s family reached out to doula Trish through a church
connection, and were pleasantly surprised to learn that Trish was a volunteer
with the hospice that would be serving their dying daughter Samantha. Trish was
new to the hospice organization, but she was an experienced volunteer. She was
in her twenties, studying to be a social worker, and had a vibrant and playful
personality. She was a perfect match for Sam, age 6, who had a contagious laugh
and a heart full of love.
One of the greatest benefits of having Trish as a doula was
that she could spend a lot of one-on-one time with her. In my role as a hospice
social worker, I often had a caseload of 35-60 patients at any given time,
wishing I could be in four places at once and knowing I needed to triage. It
brought great comfort to know that Trish was visiting Sam every day–playing
peek-a-boo, coloring, singing and sitting with her as she watched Barney on TV.
Trish kept me informed on Sam and her family. One day, while
watching Barney, Sam pointed to clouds and then gestured “sleep”. Trish
realized that perhaps Sam had some awareness of spirituality or death and
called our chaplain. He and I made a visit along with Trish, as she had
developed the skills to communicate with Sam. It was at that visit when Sam
pointed to “goodbye” and “Barney.” When asked if she was talking about heaven
and sleeping, Sam became quiet and looked to Trish. She had a trust and
familiarity with Trish that allowed Trish to read right away that Sam was
needing help finding the words. Trish used the communication board and provided
soothing encouragement. Sam then said “yes, I bye.” Even at her age, she seemed
to know. We were amazed. We also asked if she wanted Barney with her for Heaven
and she giggled and looked at Trish. Trish asked her again and pointed to some
pictures as well. Sam pointed to Barney and smiled and Trish agreed that Sam
wanted Barney with her when she died, and maybe playing on the TV. We used this
conversation together to relay end-of-life wishes to the family and continued
to work with them to plan for Sam’s death. Trish and Sam’s parents made a
scrapbook and some memorial items such as hand and foot molds. They created a
playlist of Sam’s favorite music to soothe her and to use for her memorial.
Sam slept often and progressed toward death. Though the team
came together and surrounded the family with support, Trish’s presence was
invaluable. She increased her hours, stayed with Sam so her parents could get a
break, and continued to ensure Sam received comfort measures and helped the
family track this. She supported Sam’s siblings by singing to all the kids
together and playing guitar for them.
At the time of Sam’s
passing, Trish was right there at her bedside, along with her parents, while
Barney’s “I love you” song played and they held hands in reverence for this
sweet and innocent life. It was a powerful and beautiful moment. Inside the
pain and trauma and imperfections of life, Sam died peacefully and just as she
wanted. The chaplain and I arrived at Sam’s bedside to provide comfort and
prayer. Trish and I called the funeral home and helped prepare them for next
steps. They wrapped Sam in her favorite blanket, tucking Barney under one of
her arms, close to her heart, for her journey to the funeral home.
Sam brought us hope and bravery in the face of heartache and
tragedy. In the same way, Trish entered this family’s life when they needed her
the most, with an invaluable contribution of support and friendship. Trish and
Sam’s relationship impacted the hospice team, reminding us of the value of the
deep and meaningful care end-of-life doulas provide.
Jessica Curd, LCSW is a Certified Hospice and Palliative
Care Social Worker (APHSW-C), at Our Hospice in Indiana. She is a visiting
professor at Indiana University and is pursuing a PhD in Social Work there as
well. She is an active member of the NHPCO End of Life Doula Advisory Council and is passionate about supporting and advancing the role of end-of-life doulas
in Hospice and Palliative Care. Jessica lives with her family of 4 in