Palliative Care

Definition and Core Concepts

The WHO defines pediatric palliative care as the active total care of the child's body, mind, and spirit.
It involves giving robust support to the family unit.
It begins at the diagnosis of a life-threatening illness or condition.
It continues regardless of whether curative treatments are administered.
It is not synonymous with end-of-life care.
It applies throughout the entire trajectory of the illness to optimize quality of life.
It requires a comprehensive interdisciplinary approach.
The team includes physicians, nurses, social workers, psychologists, chaplains, and child life specialists.

Palliative care is appropriate for a diverse spectrum of serious pediatric conditions.

Condition Category	Clinical Examples
Curative treatment is possible but may fail	Advanced or progressive cancer, complex congenital heart disease.
Intensive long-term treatment with premature death risk	Cystic fibrosis, severe immunodeficiency, muscular dystrophy, severe respiratory failure,.
Progressive conditions without curative options	Progressive metabolic disorders (Tay-Sachs), Batten disease, severe osteogenesis imperfecta.
Severe nonprogressive disability with health vulnerability	Severe cerebral palsy, hypoxic brain injury, severe brain malformations,.

Discussions must elicit the parent and child understanding of the clinical condition.
Use open-ended questions to explore family hopes, worries, and values.
Decision-making should focus strictly on the established goals of care.
Emphasize what interventions can be offered to improve comfort rather than stating there is nothing more to do.
Clinicians should offer medical recommendations based on family goals to decrease the parental burden of decision-making.
Integrate the perspectives of adolescents based on their chronological age and developmental stage.
Address the fears of healthy siblings by validating their feelings and ensuring open communication.

Initiate end-of-life planning well in advance of a medical crisis,.
Utilize developmentally appropriate tools like Voicing My Choices for adolescents to introduce advance care planning.
Discuss resuscitation status based on the likelihood of physiologic benefit.
Implement out-of-hospital do-not-resuscitate (DNR) verification forms when appropriate.
Utilize Physician orders for life treatment (POLST) to create actionable plans for interventions based on patient and family wishes.

Intensive symptom management is a cornerstone of pediatric palliative care.
For moderate or severe nociceptive pain, start with a short-acting opioid at regular intervals.
Avoid prescribing codeine due to variable CYP2D6 metabolism, which risks inadequate pain control or respiratory depression,.
Utilize the doctrine of double effect (DDE) at the end of life.
DDE justifies the escalation of symptom-relieving medications to alleviate suffering, even if it carries a foreseeable, unintended risk of hastening death,.

Target Symptom	Pharmacologic and Nonpharmacologic Interventions
Pain	Acetaminophen, NSAIDs, Morphine, Fentanyl, Gabapentin,,,.
Dyspnea	Low-dose Morphine, Lorazepam, fan blowing cool air on the face,,.
Secretions	Scopolamine patch, Glycopyrrolate, Atropine drops,,.
Nausea	Ondansetron, Metoclopramide, Dexamethasone, dietary modifications,,,.
Constipation	Polyethylene glycol, Senna, Docusate, Methylnaltrexone, increased fiber,,,.
Fatigue	Sleep hygiene optimization, Methylphenidate, gentle exercise,.

Focus interventions on having as many good days as possible without suffering.
Consider palliative sedation for refractory symptoms by intentionally reducing the level of consciousness.
Discuss preferred care locations, which may include the home setting, hospital, or a hospice facility,.
Address funeral arrangements, autopsy, and organ donation proactively with families.
Provide ongoing bereavement support to families, as post-death support from the healthcare team is essential during their grief journey.