Supporting Transition to the Bereaved Community After the Death of a Child Free

Our son Hayden was prenatally diagnosed with Hypoplastic Left Heart Syndrome, a life-limiting CHD. The path we chose for Hayden involved multiple cardiac surgeries. He had his first surgery at age 3 days and his second at age 4 and a half months. After a routine gastrostomy tube placement after his second surgery, Hayden’s oxygen plummeted, which required an emergent bedside chest tube. Because of improper chest tube placement, he developed cardiac arrest. After 70 minutes of cardiopulmonary resuscitation and 48 hours of extracorporeal membrane oxygenation, our son was ultimately pronounced brain dead.

In the days leading up to Hayden’s death, we felt uninformed as to whether he would live and unprepared for the truth of what was happening to our family. When we were told the end was very near, we felt blindsided.

In the hours before Hayden’s death, our nurse made hand and foot molds and the child-life team brought ink, paint, and other craft materials to make lasting prints. It was not until months or even years after his passing that I learned from other bereaved parents how much more we could have been offered to support our family in Hayden’s last moments. It would have been beneficial to our family if a member of the hospital staff (eg, a death doula or bereavement coordinator) was specifically dedicated to support us as we said our final farewells to Hayden and to coordinate bereavement resources after his passing. We should have been informed of possibilities like cutting off a curl in the back of his hair, dressing him one last time, or giving him his final bath. It would have been helpful to have someone provide us with resources that were relevant for our family and maybe even handle awkward encounters in the hospital, including, in our case, a lactation consultant who advised me immediately after Hayden’s passing to get bloodwork so I could donate the rest of my milk.

After Hayden’s passing in the hospital, we did receive a folder with resources for bereaved families, but these were all local resources and we were not from the local area. Parents who just lost a child are likely in a fog and are not thinking clearly or comprehending much beyond the reality that their child is dead, much less sifting through a folder with therapists’ names and phone numbers. Over the next few weeks after Hayden’s passing, we did receive support from his care providers via phone call and e-mail. More can be done, such as creating a bereavement care program that sends timely support to bereaved parents over the course of the first 2 years after their child’s passing. Based on my experience working with bereaved parents over the past 8 years, the fog tends to lift somewhere between 6 months and 2 years after the death and supportive materials are likely to be best received at those times.

Two months after Hayden’s death, we established Hayden’s Heart, a nonprofit designed to support families affected by CHD. Because of our loss, we are especially passionate about assisting families who have experienced the tragic loss of a child. We host annual events and send financial grants and care packages to families. To assist in their transition to the grieving community, we also send bereaved families on mini getaways and host retreats under our sister nonprofit, Hayden’s House of Healing. We have found partnering with hospitals easy when it comes to giving tangible items, such as care packages and funding for programs already in place. However, we continue to find it challenging to share printed resources, including information about our retreats, in hospital bereavement packages because we are not directly affiliated with the hospital.

The critical role health care providers play in helping prepare patients and families for significant transitions is well established in the literature, particularly for children with special health care needs. It has taken decades of research and advocacy to design consensus guidelines for standard practices and to ensure financial support at a systems level for children with special health care needs and their families as they transition from pediatric to adult care.⁷  Experts underscore the process of facilitating the transition of patients with chronic complex conditions from pediatric to adult care is “more than a transfer of care.” It needs to begin early by anticipating future needs before the point of transfer while reassuring families there will be no interruptions in care. It means providing family-centered, comprehensive, and coordinated care, anticipatory guidance, and effective support systems.⁷ 

Other transition points for children with special health care needs and their families (eg, transition from prenatal to postnatal care, from hospital to home, or from home to a facility) have also been the focus of research and advocacy, with standard practices and designated professionals (eg, perinatal coordinators and discharge coordinators). Multiple professional medical organizations have agreed on consensus guidelines that assert “health care transitions are most successful when there is a designated professional, who, together with the patient and family, takes responsibility for the process.”⁸  Why not learn from our colleagues and adopt some of their philosophies and practices to support families in making one of the most devastating transitions a family can make: from caring for a child living with serious illness to grieving the loss of that same child?

Despite the clear need, there remains no clear standardized practice on when and how to best support bereaved families.^9,10  Even more, the efficacy of specific bereavement interventions, such as camps, workshops, seminars, support groups, and online resources, remain relatively unknown.^9,11  And thus without standardization or an evidenced-based approach, practice variability remains a reality. That is, bereavement interventions may be offered but not consistently and not everywhere. It is precisely this variability in support that increases the risk of health care disparities among bereaved families during such a critical and vulnerable transition in their lives.

Our qualitative research on the psychosocial needs of families impacted by CHD highlights feelings of abandonment among bereaved parents and a lack of support for this unimaginable transition. Of 9 bereaved parents who participated as part of a larger caregiver sample,⁵  5 noted feelings of abandonment by the medical team and/or support system. One parent stated the following:

Another parent noted the following:

Although the total number of bereaved parents in the sample was relatively small, their children received care across 8 US hospitals, suggesting feelings of abandonment and insufficient support may reflect the lived experiences of bereaved caregivers across care settings.

As a pediatric palliative care physician, I am often in the position of partnering with primary medical providers and subspecialists to care for patients at end of life. Over the course of almost 10 years, I have witnessed clinicians struggle with how best to support families once the goals have shifted toward a comfort-directed care plan (ie, home with hospice) or after a child’s death. In either scenario, the primary provider’s role in the child’s care has shifted dramatically. The prescribers are no longer prescribing. Sometimes, there is a clear delegation of bereavement support to other team members, including hospice or social work. And other times, particularly without hospice, there is not. But where does that leave the primary provider embedded in any given family’s support system? How do we gracefully say goodbye without abandoning our bereaved families? Although my experience is certainly not generalizable, I wonder if this is a symptom of a larger pattern: a need for a shift in perspective and a need for a more standardized approach to bereavement support. Providers need to recognize they still have something to offer, even after a child’s death, when the prescription pad is no longer helpful but compassion still is.

It is unacceptable that such disparities in bereavement support exists and that parents still echo sentiments of abandonment. We can do a better job. We need to take the lessons learned from our colleagues who have worked diligently to advocate for standardizing the practice of transitioning children with special health care needs to adult care. A practice that prioritizes improved access, anticipatory guidance, care coordination, and resources. The same philosophy can be applied to the pediatric patients and families living with life-limiting illnesses facing a short life expectancy. These families need, and deserve, continued support to avoid short- or long-term adverse health outcomes because they are facing the death of a child. We know resources exist. Health care systems should strive to provide a uniform package that streamlines resources and connects all interested families to the appropriate resources early and routinely (Table 1).

Although there are limits to what medicine can offer to prolong the life of a child with a serious illness, there is so much more we can do to ensure optimal bereavement support to families facing the seemingly impossible transition to life after the death of a child. Psychosocial clinicians, such as social workers, counselors, child-life specialists, clergy, psychologists, or psychiatrists, trained in grief support can help caregivers and siblings navigate changes in individual identity, sense of purpose, roles and responsibilities, and overall well-being. Through advocacy, research, and care coordination, institutions will hopefully standardize the devastating transition a family must make after the death of a child. Standardizing bereavement support can ensure all families have access to the same resources, without interruption, to mitigate feelings of abandonment through the full realization of family-centered care.

CHD

congenital heart disease