# Pediatric and Adult Palliative Care: Shared Principles, Different Contexts

## Introduction

**Palliative care** focuses on improving quality of life for patients with serious illness through symptom management, psychosocial support, and goals-of-care communication. While foundational principles are shared, pediatric and adult palliative care differ in disease trajectories, communication frameworks, decision-making paradigms, and family dynamics. Med-peds physicians are well-equipped to practice palliative medicine across ages, understanding that palliative care is appropriate at any stage of illness and is not synonymous with end-of-life care.

## Core Principles Shared Across Ages

**Whole-person care**: Addressing physical, emotional, social, and spiritual dimensions of suffering. **Goals-of-care conversations**: Aligning treatment with patient/family values and preferences. **Symptom management**: Evidence-based treatment of pain, dyspnea, nausea, anxiety, and delirium. **Interdisciplinary team**: Physicians, nurses, social workers, chaplains, child life specialists, psychologists. **Concurrent care**: Palliative care alongside curative or disease-modifying treatment. **Advance care planning**: Documentation of preferences to guide future decisions.

## Differences in Pediatric vs. Adult Palliative Care

| Domain | Pediatric Palliative Care | Adult Palliative Care |
|--------|--------------------------|---------------------|
| Disease trajectory | Heterogeneous; uncertain prognoses; may span decades | More predictable decline (cancer, COPD, CHF) |
| Decision-making | Parents use best interest standard; assent from age 7+ | Patient autonomy; substituted judgment by surrogates |
| Communication | Age-appropriate language; child life specialists | Direct patient communication; health literacy focus |
| Family dynamics | Family is the unit of care; siblings affected | Primarily patient and spouse/adult children |
| Hospice eligibility | Concurrent care allowed (ACA Section 2302) | Must forgo curative treatment (Medicare) |
| Bereavement | Parental grief unique in intensity; legacy-building | Spousal/filial grief; routine bereavement services |
| Pain assessment | FLACC, Wong-Baker FACES (age-dependent) | Numeric rating scale, self-report |
| Opioid dosing | Weight-based (morphine 0.1-0.2 mg/kg PO q4h) | Fixed dosing |

### Disease Trajectories

**Adult**: Progressive diseases (cancer, COPD, heart failure) with relatively predictable decline. **Pediatric**: More heterogeneous; includes congenital anomalies, genetic conditions, neurodegenerative diseases, and cancer. Many pediatric conditions have **uncertain prognoses** with prolonged trajectories spanning years to decades. Children may live with conditions for which there is no adult equivalent (e.g., Tay-Sachs, spinal muscular atrophy type 1)

### Communication and Decision-Making

**Adults**: Patient autonomy is paramount; surrogate decision-makers use substituted judgment when patients lack capacity. **Pediatrics**: Parents serve as primary decision-makers using **best interest standard**. **Assent**: Children aged 7 and older should have age-appropriate involvement in decisions. **Adolescents**: May demonstrate mature decision-making capacity; their preferences should carry significant weight. **Developmental considerations**: Use age-appropriate language; child life specialists facilitate understanding through play and art.

### Family-Centered Care

In pediatrics, the **family is the unit of care**; siblings, grandparents, and school community are all affected. Bereavement support for parents losing a child has unique intensity and duration. **Parental grief** differs from spousal or filial grief; guilt, anger, and existential distress are prominent. Legacy-building activities (handprints, memory boxes, videos) are important in pediatric end-of-life care.

![Comparison of palliative care frameworks in pediatric and adult settings](illustration-palliative-care-comparison.jpg)

## Symptom Management

### Pain

**Assessment tools**: FLACC scale (0-7 years), Wong-Baker FACES (4-12 years), numeric rating scale (>8 years and adults) **WHO analgesic ladder** applies across ages; start with acetaminophen/NSAIDs and escalate to opioids. **Opioid dosing**: Weight-based in children (morphine 0.1-0.2 mg/kg PO q4h); fixed dosing in adults. **Neonatal pain**: Frequently undertreated; sucrose, swaddling, and low-dose opioids are first-line. **Neuropathic pain**: Gabapentin and pregabalin are effective in both populations; TCAs used cautiously in children.

### Dyspnea

Low-dose opioids (morphine 0.05-0.1 mg/kg in children) reduce dyspnea without hastening death. Fan therapy and positioning provide non-pharmacologic relief. Supplemental oxygen for comfort, not targeting specific SpO2 in end-of-life care. Benzodiazepines for anxiety-related dyspnea.

### Nausea and Vomiting

Ondansetron first-line in both populations. Dexamethasone for chemotherapy-induced and intracranial pressure-related nausea. Metoclopramide for gastroparesis; avoid in children under 1 year.

### Agitation and Delirium

**Terminal delirium** is common in adult end-of-life care; less well-characterized in children. Haloperidol is first-line for delirium in adults; use cautiously in children. Non-pharmacologic measures: familiar environment, family presence, minimize unnecessary interventions. **Palliative sedation**: Reserved for refractory suffering at end of life; requires ethical framework and informed consent.

## Advance Care Planning

**Adults**: Advance directives, healthcare power of attorney, POLST/MOLST forms. **Pediatrics**: Advance care plans often documented as **goals-of-care agreements** rather than formal advance directives. In both populations, regular reassessment of goals is essential as disease progresses. **DNAR/DNR orders**: In pediatrics, families and medical teams should discuss what interventions are desired and which should be withheld; avoid all-or-nothing framing. Portable medical orders (POLST equivalent) ensure continuity across settings.

![Advance care planning documentation approaches across ages](illustration-advance-care-planning-across-ages.jpg)

## Hospice Care

**Adult hospice**: Requires estimated prognosis of <=6 months; patient must forgo curative treatment under Medicare hospice benefit. **Pediatric hospice**: The **Concurrent Care for Children** provision (ACA Section 2302) allows children on Medicaid/CHIP to receive hospice services while continuing curative treatment. Home-based hospice is preferred by most families; inpatient hospice units available for symptom crises. Bereavement services extend 13 months post-death for families.

## Perinatal Palliative Care

For pregnancies with life-limiting fetal diagnoses (anencephaly, trisomy 13/18, bilateral renal agenesis) Involves birth planning, comfort care plans, memory-making, and family support. Multidisciplinary team includes maternal-fetal medicine, neonatology, palliative care, and social work.

![Perinatal palliative care pathway from diagnosis through bereavement support](illustration-perinatal-palliative-pathway.jpg)

## Clinical Pearls

Palliative care should be introduced early in serious illness, concurrent with curative therapies, not reserved for end of life. In pediatrics, prognosis is often uncertain, making rigid prognostic criteria for palliative care referral inappropriate. Children as young as 7 should be given age-appropriate information and involved in care decisions through assent. The Concurrent Care for Children provision uniquely allows pediatric patients to receive hospice alongside curative treatment. Parental bereavement after a child's death is among the most intense forms of grief and requires dedicated long-term support.

## References

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2. Weissman DE, Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting. *J Palliat Med*. 2011;14(1):17-23.
3. Wolfe J, Hinds PS, Sourkes BM. *Textbook of Interdisciplinary Pediatric Palliative Care*. Elsevier; 2011.
4. Quill TE, Abernethy AP. Generalist plus specialist palliative care -- creating a more sustainable model. *N Engl J Med*. 2013;368(13):1173-1175.