A Mother’s Perspective on Palliative Spiritual Care: What Helped, What is Still Needed
This article was first published by the National Hospice and Palliative Care Organization: Pediatric E-Journal (formerly ChiPPS E-Journal) in August 2017: Issue 48: Spiritual Care of Children and their Families.
In this article, I write from my perspective as the mother of a child who needed pediatric palliative care during the entire seven years of my child's life. In this article I note that “The spiritual care we received fluctuated greatly throughout these seven years” and go on to describe seven beneficial services we did receive along with two services we never found.
My son, Levi, was born with severe brain damage. Due to the complex medical conditions reverberating
from his brain damage, Levi needed palliative care support his whole life. In seven years, this support
allowed Levi to live happily at home with our family, ER visits were minimal (4 times a year at most),
hospitalizations were only 3 weeks NICU at birth and 2 weeks PICU at age 3, all major illnesses and his
end of life were supported at home. As a result of so few hospitalizations and limited clinic visits, the
majority of our palliative support was community based/in home.
The spiritual care we received fluctuated greatly throughout these seven years. As programs changed, so
did our needs as a family. We looked to both hospital-based programs that provided in-home services, as
well as community-based programs to help us meet the spiritual needs of our family. Here is a summary
of the impact of these services plus two services we needed but never found.
1. Chaplain
When initially approached by the Chaplain we were encouraged to “ask for what we need and to know
this support could take any form we needed.” Having just been weeks away from our son’s birth, tidal
wave of diagnoses, deep in the trenches of learning how to care for his complex needs, we were clueless
on how to respond. Even as people of faith, connected to a faith community, and having served in
pastoral leadership, we were still clueless. We already had people praying for our family, a CaringBridge
site, and meals were still being dropped off. What more could be done? It took years for us to discover
our response: a need to have conversations, away from our home, about the inherent spiritual nature and
challenges of having a child on palliative care. These ‘coffee shop conversations’ gave us the insight,
support, and thoughtful questions to return home with greater spiritual perspective. The ability to be heard
and seen by someone with an open heart and no “agenda” was a tremendous gift. By example we
learned more about how to “hold the space” and bring that home to our child.
2. Nurses in the Know
In every version of palliative care my son received, our nurses were the most frequent point of contact.
They came to intimately know our family, home life, and complexities of our child. Nurses who took the
time to learn about our spiritual beliefs were able to support the faith-life of our family. These same nurses
got to know me as a person, were willing to see my spiritual distress, and open the door to talk about it.
With as many doctors and nurses I saw over my son’s seven years, these moments with our palliative
nurse were a rare gift.
3. Music Therapist: bringing forth the unseen
There was always an acknowledgement of the sacredness of this moment, when the music therapist
visited. Whether music therapy was being used to support comfort, reduce anxiety and pain, create
meaningful sibling interactions, bring joy, provide neurological ease during difficult moments (ex: position
transfers), engage my child in music-making, or pre/post medical procedures, the value of my child as a
whole-person was always front and center. The best music therapists were spiritually attuned and
understood the spiritual implications of their work. These sessions became times for us to slow down as a
family and re-center ourselves on the easily unseen spiritual aspects of loving and caring for one another.
4. Creating a Plan of Care: a spiritual safety net
Within the first weeks of transitioning from the NICU to home, our palliative team guided us through a
conversation to learn about our values and beliefs as parents, educating us on the realities of emergency
interventions for our son, and helping us translate both into medical decisions with a plan of care. Over the years, this plan became a spiritual safety net for us. When faced with an emergency or significant
downturn in my child’s health, the plan kept everyone on the same page with how to proceed. It also
protected my husband and me from having to work through difficult medical decisions in the midst of
increased trauma. As a result we had more energy to be spiritually present with our child and each other
in these moments. Over the years I have witnessed fellow parents slide quickly down a spiritual spiral
when an emergency arises and the work has not yet been done to create a plan.
5. Sibling Playmate: who is coming for me today?
At three years of age, my younger son would wake up every morning and ask “who is coming for me
today?” Having a brother with medical complexities means many, many people visit your home, at all
hours, for the purpose of supporting your brother. If you are lucky, someone will stop and connect with
you for a few moments, maybe even play with you. Through a community-based palliative program we
were able to have a volunteer come once a week for the sole purpose of playing with my younger son.
These visits were golden to him. They boosted his self-esteem and gave him a place of value in the sea
of visitors.
6. Meeting Fellow Parents: being understood
HIPPA has made it more difficult for families with similar children to find each other, particularly when the
umbrella diagnosis doesn’t have an organization to reach out to. Yet when we parents find each other, we
generate an enormous amount of spiritual support for one another, even when we come from different
faith traditions. We are finally understood without having to explain the “what” and “whys” about our child.
Children with medical complexities in need of palliative care are a unique group whose parents are in
serious need of community. Isolation becomes the norm. Our community-based palliative program
supported family respite weekends at Faith’s Lodge, where we met families like ours and formed lifelong
friendships. Non-palliative programs hosted family picnics, mom’s retreats, and special events as a way of
connecting families.
7. Marriage Counseling: undoing aloneness
Two years ago our community-based palliative program began to offer monthly small group marriage
counseling sessions to parents whose children are medically complex. In these sessions we met with a
marriage and family therapist to focus on the unique challenges we face as we work to undo aloneness,
repair our marriages, and support relational attachment, while recognizing and supporting grief. Our
particular therapist gives direct attention to the spiritual needs within marriage and the particular
challenges we face with children who have life-limiting conditions. This has been life changing for every
couple.
The Care that was Missing
There are two aspects of spiritual support we longed for but never received, both of which could be
supported by hospital or community-based palliative programs.
1. Rituals for Tending to my Child’s Soul
In addition to being medically complex, my son was also nonverbal, deafblind, and had limited physical
movements. Meanwhile his heart was huge and his soul deeply attentive. Within the swirl of tending to his
medical, social, therapeutic, and educational needs, we often were at a loss for how to engage our son
within our faith tradition. Gathering with our faith community was inconsistent at best due to his medical
challenges.
The chaplain, nurses, music therapists, and child-life specialists could each support a family in exploring
ideas on how to find meeting points between their child and faith tradition, by noticing a family’s faith
practices and asking open-ended questions to invite a parent to think inclusively about their child. Have
you considered taking time to pray with your son and allowing time/silence for him to pray? I notice you
are a family that sings (song of faith), how could your child uniquely participate? As you prepare for (faith
holiday) have you considered ideas for how your child will experience this holiday? What would make the
holiday special to him? Encouragement can be provided for families to find ways to engage their child in
faith traditions: modified rituals to support a child’s abilities, specific inclusion in faith holidays, finding
accessible places of worship. Tending to the soul of their child will spiritually nourish the parent and the
whole family.
2. End-of-Life Planning: a second safety net
Our son was born with a life-limiting condition. Doctors anticipated weeks to months as his initial lifespan.
The older he got the more the unknowns of death loomed. When my son’s friend with medical
complexities died unexpectedly, I witnessed the parents become overwhelmed with shock and grief and
then were asked to make critical end-of-life decisions. Soon after that, grief easily gets compounded by
guilt, spiritual trauma, and questioning if you did right by your child.
End-of-life planning needs to go hand in hand with the creation of a care plan. As difficult as these
conversations are for parents, the compounded grief of not having had the opportunity to plan is worse.
Palliative teams are skilled at helping families translate their values into medical decisions. These same
skills can be developed for end-of-life planning. We enlisted the help of a home funeral guide to create a
plan for my child’s end of life, after-death care, and memorial preparations. Death doulas are another
resource. Waiting until a child is on hospice to start these conversations is too late. For parents who have
worked long and hard to support their child’s life, there is an enormous amount of spiritual stress in
making the shift onto hospice and supporting their child’s transition into death. Having an end-of-life plan
in place provides a critical safety net for parents and providers alike.
There is an enormous benefit when every member of the palliative care team is engaged in spiritual care.
Everyday moments become transformable and spiritual distress is alleviated. The process of translating
one’s values into medical decisions for the creation of plans of care for emergencies and end of life,
allows families to thoughtfully prepare. Without such plans spiritual pain increases as parents try to
navigate the complexities of these decisions and their relationships while in crisis. Undoing aloneness for
the whole family is a critical way of providing spiritual support and longevity. There is little time to work on
repairing relationships when parents have to give their total attention to the complex medical needs of
their children. More attention needs to be given to the spiritual experience of the child, particularly when
he or she is not able to speak about this on his or her own. Families need support and encouragement to
engage their child in their faith tradition in meaningful ways. Tending to the spiritual needs of families
takes time, thoughtfulness, and a willingness to be present with people in their spiritual distress. This
happens best when members of the palliative team are invested in tending to their own spiritual needs.
