State of the Art Pediatrics: Pediatric Palliative Care: It’s Palliative Care, not Palliative “Scare"

After attending this year’s American Academy of Hospice and Palliative Medicine (AAHPM) Annual Assembly, one of my colleagues brought our team back stickers featuring the phrase “It’s Palliative Care, not Palliative Scare.” Many explanations of my job as a palliative care clinician, both to patients and people I encounter outside of work, boil down to this distinction. While most people associate palliative care with advance care planning and end-of-life care, which we do, that is not the entirety of our field. The World Health Organization defines pediatric palliative care as the “active total care of the child’s body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease.”¹ I introduce us as a team of doctors and nurses who accompany patients and families on complicated and unexpected medical journeys.

Palliative care is intended as an extra layer of support, which can take a variety of forms. Palliative care clinicians are specially trained in symptom management, including pharmacological and non-pharmacological interventions for pain, nausea and vomiting, and many other symptoms that contribute to physical suffering, especially near the end of life. We can aid in complex medical decision-making, such as determining whether or not to proceed with tracheostomy placement for chronic mechanical ventilation. We have expertise in optimizing quality of life and comfort both at end of life and throughout a medical journey. We frequently advocate for our patients and their families, seeking to help tell their story and keep their hopes, worries and values at the forefront of the child’s care.

The Children’s Mercy Palliative Care Team (PaCT) works closely with teams throughout the health system and the community to serve patients with life-threatening and life-limiting conditions and their families. We hope to be a resource not only for our patients and their families, but also for our colleagues. One of our responsibilities is to help train others in primary palliative care, as frequently patients and families find solace in having difficult conversations with their primary care provider (PCP) or another trusted clinician. There are many ways for all pediatric health care providers to engage in primary palliative care. Palliative care can partner with primary medical providers to have complex conversations and discern best next steps, as well as provide recommendations and education on topics including communication, symptom management, quality of life and more.

Many resources are available for providers wishing to expand or enhance their primary palliative care skills. One I recommend to nearly every family I meet is the Courageous Parents Network (CPN). This website was created by a mother of a child with medical complexity due to a life-limiting disease, who has been highly engaged with the pediatric health care community. It provides decision-making pathways, blog posts, video interviews with parents and clinicians, and a variety of resources for patients and families about everything from supporting siblings, to what to expect with a child in the neonatal intensive care unit, to evaluating clinical trials as an option for your child. In addition to extensive family resources, there is also a section for clinicians and educators who wish to “explore the lived experience of families caring for very sick children.”

An important concept covered by CPN is the idea of a patient’s “baseline,” which may change over time. Familiarizing the medical team with the concept of what a “good day” looks like for an individual patient can deepen understanding and help guide decision-making as the baseline shifts. This point of reference can include things like typical level of respiratory support and number of seizures in a day, but also quality of life markers such as ability to enjoy time with family and tolerate therapies. After an acute illness or other event, a “new normal” may reveal itself. Inability to get back to a previous baseline can be a marker of disease progression and also a difficult indication that a patient’s prognostic timeline may be changing. The concept of baseline also highlights the individual differences and needs of each patient. What might be a good day for one patient may seem unacceptable for another family. It highlights the need for nuanced care and malleable care plans.

Palliative care clinicians are often considered specialists in communication. This is a skill that can be developed and honed with training and practice. An excellent resource for health care communication is the VitalTalk program. VitalTalk offers courses and guides to aid clinicians through a variety of situations requiring effective communication, including delivering serious news, recognizing and responding to emotions, and many more. Investing in communication skills is an important aspect of primary palliative care.

The American Academy of Pediatrics also has several policies and guidelines that can be useful for clinicians seeking to support their patients and families, including the guidelines for pediatric end-of-life care and the report “Supporting the Family After the Death of a Child or Adolescent.”^2,3 These documents offer the collective wisdom of experts in the field as well as evidence-based recommendations about end-of-life care and bereavement for all pediatricians to use in their practice.

Another way that PCPs may engage with palliative care is when a patient they follow enrolls in hospice care. PCPs or primary specialists may be asked by the patient or family to serve as the attending of record. Families frequently appreciate the continuity and ongoing support this provides. This role is voluntary and typically involves partnering with the hospice team to make recommendations for symptom management and end-of-life care as well as completing the death certificate.

These are complex and emotionally difficult topics to consider, and the palliative care team is available and willing to support our community of providers to ensure excellent care to patients and families throughout their medical journey. Within the Children’s Mercy system, an inpatient consult order or outpatient referral order can be placed. Outside of the system, patients can be referred to palliative care through the Children’s Mercy referral website, https://www.childrensmercy.org/health-care-providers/refer-or-manage-a-patient/request-a-consult/.

Palliative care does not have to be—and should not be—a source of fear. We strive to help refine and redefine hope, alleviate worries, and craft a plan of care that prioritizes patients’ and families’ values through a holistic and comprehensive approach to care.

References:

1. Palliative care for children. Fact sheet. World Health Organization; June 1, 2023. Accessed August 1, 2025. https://www.who.int/europe/news-room/fact-sheets/item/palliative-care-for-children
2. Linebarger JS, Johnson V, Boss RD, et al. Guidance for pediatric end-of-life care. Pediatrics. 2022;149(5):e2022057011. doi:10.1542/peds.2022-057011
3. Weaver MS, Nasir A, Lord BT, et al. Supporting the family after the death of a child or adolescent. Pediatrics. 152(6):e2023064426. doi:10.1542/peds.2023-064426