Those entering pediatrics rarely are prepared for their role when an infant, child or adolescent dies. Yet over the course of a pediatrician’s career, deaths will occur and may be more common for some subspecialists.
The lives and deaths of these children have a rippling effect. Memories are imprinted on those who cared for them, especially their family.
A new AAP clinical report draws on the growing literature from the maturing field of pediatric hospice and palliative medicine and provides practical approaches for quality end-of-life care.
The report Guidance for Pediatric End-of-life Care from the Section on Hospice and Palliative Medicine is available at https://doi.org/10.1542/peds.2022-057011 and will be published in the May issue of Pediatrics.
Shared goals, partnership
Quality end-of-life care honors and aligns with a patient’s individual goals and values. It relies on a partnership among pediatricians and other pediatric providers, patients and families, with a culturally sensitive and trauma-informed approach.
The report reviews foundational aspects of such care, including early involvement of palliative care, shared decision-making and discussions about advanced care planning (ACP).
The report includes two tables with guidance on pediatric ACP, including key components and when to consider initiating or revisiting it.
Guidance for Pediatric End-of-life Care connects ACP discussions to decisions about life-sustaining medical therapies, code status documentation and preferred location of death, including the role of hospice supports.
Hospice is a particular form of palliative care, and access/local availability of an experienced pediatric hospice organization is not guaranteed. The hospice model and philosophy rely on interdisciplinary teamwork to promote comfort and relief from the distress and suffering that can escalate for the patient and family as end of life nears.
Providing information, compassion
Many families want clinicians to prepare them for what their child or adolescent is likely to experience as death approaches, and older pediatric patients may want to know about the dying process.
Clinicians benefit from understanding that families have different information needs, and needing to hear information again does not equate to denial or misunderstanding. It is important for clinicians to anticipate symptoms at end of life and have strategies for explaining and managing them. The report offers suggestions for talking about common symptoms such as changes in appetite, alertness, breathing and skin, as well as altered cardiac, bowel and bladder functioning.
Guidance is provided regarding organ and tissue donation, death pronouncement, death certificates and autopsy. For each of these, the institutional, state or regional variations and regulations make specific guidance beyond the scope of the report.
Compassion is at the core of quality end-of-life care. Each family, even each family member, will experience the death and associated grief differently. Each clinician also will be impacted by the ripples of the child’s death, and helpful responses may include holding a staff debriefing, attending the funeral or memorial service and writing a note of condolence.
- Engage palliative care early to facilitate communication and decision-making with families of children and adolescents with serious illness. Advocacy is important to expand pediatric palliative care and hospice availability.
- Children, adolescents and families should be encouraged to share goals and preferences, so clinicians can guide choices that account for their wishes and medical needs.
- Pediatric ACP ideally begins soon after a diagnosis and is revisited as a patient’s condition, available treatment options and goals of care evolve.
- Families may struggle with decisions about life-sustaining therapies; clinicians should help families reconcile how these therapies align with the goals of care at end of life.
- Code status documentation can be important preparation for end-of-life care but is not mandatory. Do Not Resuscitate orders apply to specific treatments and should not be assumed to reflect broader treatment goals.
- Discuss options for the location of the child’s or adolescent’s final days; collaboration with a pediatric hospice organization may expand the available choices.
- Clinicians should provide families with anticipatory guidance about the end of life.
- Families value support from clinicians during and after the dying period; clinicians should be ready to offer guidance about autopsy, tissue/organ donation, funeral planning and bereavement support.
Dr. Linebarger is a lead author of the clinical report and chair of the AAP Section on Hospice and Palliative Medicine Executive Committee.