Families grieving after the death of a child need support from their pediatrician, who can look to a new AAP clinical report for recommendations and resources on offering assistance.
After a patient dies, it can be difficult for pediatricians to know what to say or how to help. The clinical report recommends using a family-centered, culturally humble, trauma-informed approach to support parents and siblings throughout the grief process.
The report Supporting the Family After the Death of a Child or Adolescent, from the AAP Committee on Psychosocial Aspects of Child and Family Health and the Section on Hospice and Palliative Medicine, is available at https://doi.org/10.1542/peds.2023-064426 and will be published in the December issue of Pediatrics. It reviews evidence on grief, bereavement and mourning, with guidance to support family caregivers, siblings and the child’s community.
“Psychosocial support for families after the death of a child embodies core medical values of professional fidelity, compassion, respect for human dignity, and promotion of the best interests of a grieving family,” the report states.
Impact of circumstances
Families need practical and emotional support during their grief journey, which is unique to each individual and family, and does not follow predictable stages. Trauma can complicate the process.
In congenital conditions and chronic illnesses such as cancer or cardiomyopathy,
grief may begin at the time of diagnosis. A parent’s awareness of a child’s impending death, however, does not necessarily mean he or she will feel more prepared or accept the death.
In addition, pediatricians and other care teams may have provided long-term treatment for children with a chronic illness or complex medical condition. After the child dies, the family can suffer from the loss of the pediatrician and may feel abandoned. The doctor’s continuing involvement in such cases is especially meaningful.
Other circumstances of a child’s death that may impact how families grieve include sudden death or death due to violence, suicide or medical error.
About 3,400 U.S. babies die each year from sudden infant death syndrome and other unexpected deaths. Firearm-related deaths are the No. 1 cause of death among 1- to 19-year-olds, increasing 29.5% in children and teens from 2019-’20. Drug overdoses and poisonings in this age group went up by 84% in the same timeframe.
Emotions can be especially strong and complicated when death occurs due to suicide, the use of alcohol or drugs, medical error, homicide or injuries caused by negligence, such as driving under the influence.
Fetal loss, miscarriage and stillbirth also cause deep feelings of loss in parents and may be underappreciated by physicians.
Infant mortality accounts for more than half of all childhood deaths in the U.S., with inequities across racial and ethnic groups. Pediatricians can be aware of how the social drivers of health and structural racism fuels grief reactions.
No matter the cause of a child’s death, pediatric practices should encourage families to reach out to clergy, family members, neighbors, a child’s school community, work colleagues, other medical providers, grief counselors, palliative care programs and others, including via telehealth. Some diagnosis-specific organizations (e.g., muscular dystrophy, sickle cell disease) also offer resources.
Cultural considerations influence how families grieve, and this may involve gender roles, burial practices and mourning traditions.
Pediatricians also are in a unique position to screen for grief and support siblings who are patients. Sibling reactions can include anger outbursts, sleep disruption, behavioral issues and social withdrawal. Caregivers overwhelmed with their own grief may be less able to tend to their other children’s needs.
The overall goal, the report emphasizes, is to help bereaved families realize they are not alone, to foster a culturally sensitive approach to grief, maximize adjustment after the death of a child and promote the best interests of the grieving family.
Recommendations for pediatricians
- Express compassion and provide emotional support to the family.
- Become aware of one’s personal beliefs, values and practices about grief and death.
- Learn about cultural and religious traditions surrounding death and bereavement.
- Consider visiting seriously ill or dying patients in the emergency department or pediatric intensive care unit.
- With a phone call or personal visit, acknowledge the death of an infant, child or adolescent who was a patient. Follow up with guidance for surviving siblings.
- Be aware of support groups and other resources in the community. Consider referral for counseling.
The clinical report at https://doi.org/10.1542/peds.2023-064426 suggests how pediatricians can support siblings based on age, provides examples of questions to ask family members and lists 15 resources.