What is the recommended approach for palliative care medical charting in a pediatric patient diagnosed with colorectal carcinoma?

Palliative Care Medical Charting for a 5-Year-Old with Colorectal Carcinoma

For a pediatric patient with colorectal carcinoma requiring palliative care, documentation must focus on symptom burden assessment, goals of care discussions with family, multidisciplinary team coordination, and quality of life metrics, recognizing that this diagnosis is exceptionally rare in children and requires consultation with adult colorectal cancer specialists. 1

Initial Documentation Requirements

Disease-Specific Assessment

• Histopathologic confirmation: Document tumor grade (G1-G4), stage, and molecular testing results including MSI/dMMR status, as these directly impact treatment options 2, 3
• Extent of disease: Record metastatic sites (liver, lung, peritoneal), resectability assessment, and imaging findings (CT chest/abdomen/pelvis) 3
• Performance status: Use age-appropriate functional assessment scales rather than adult ECOG/Karnofsky scores 3

Symptom Documentation Framework

Chart the following symptoms with severity scales (0-10 when age-appropriate):

• Pain: Location, character, intensity, impact on daily activities and sleep 3
• Gastrointestinal symptoms: Nausea, vomiting, anorexia, constipation, diarrhea, bowel obstruction signs 3
• Dyspnea: Respiratory rate, oxygen requirements, activity tolerance 3
• Fatigue: Energy levels, ability to participate in age-appropriate activities 3
• Psychological distress: Anxiety, depression, fear, behavioral changes (document using pediatric-validated tools) 3

Goals of Care Documentation

Family Communication Records

• Prognostic disclosure: Document what the family understands about the child's prognosis, using phrases like "months to weeks" or "weeks to days" rather than specific timeframes 3
• Treatment preferences: Record family's wishes regarding anticancer therapy continuation versus comfort-focused care 3
• Decision-making capacity: Note who holds medical decision-making authority and any advance care planning discussions 3
• Avoid "giving up" language: Frame palliative care as "fighting for better quality of life" rather than cessation of treatment 3

Life Expectancy-Based Treatment Plans

For months to weeks prognosis:

• Document discussions about discontinuing anticancer therapy 3
• Record referrals to pediatric palliative care or hospice services 3
• Chart shift from life-prolonging to quality-of-life focused interventions 3

For weeks to days prognosis:

• Document cessation of anticancer therapy 3
• Record intensive symptom management plans 3
• Chart preparation discussions with family about the dying process 3

Medication Management Documentation

Pain Management

• Opioid dosing: Record specific doses, routes (oral, transdermal, subcutaneous, intravenous), and titration rationale 3
• Critical documentation for dying patients: Note that opioid doses should NOT be reduced solely for decreased blood pressure, respiration rate, or level of consciousness when necessary for pain/dyspnea control 3
• Aggressive titration: Document rationale for rapid dose escalation in moderate/severe acute pain 3
• Bowel regimen: Chart prophylactic laxatives (bisacodyl 10-15 mg daily with goal of one non-forced bowel movement every 1-2 days) 3

Symptom-Specific Interventions

For malignant bowel obstruction:

• Document assessment of goals (decrease nausea/vomiting, allow eating, decrease pain, enable home discharge) 3
• Chart pharmacologic management: octreotide (150-300 mcg SC bid), anticholinergics, corticosteroids 3
• Record decision-making regarding NG tube placement (only if other measures fail) 3
• Note avoidance of prokinetic agents like metoclopramide in complete obstruction 3

For constipation:

• Document impaction checks and manual disimpaction with premedication (analgesic ± anxiolytic) 3
• Chart escalation through laxative ladder: bisacodyl, polyethylene glycol, lactulose, magnesium-based agents 3

Multidisciplinary Team Coordination

Required Team Member Documentation

• Pediatric oncology: Treatment decisions, chemotherapy modifications 1
• Adult colorectal oncology consultation: Essential given rarity in pediatrics and rapidly evolving adult treatment protocols 1
• Palliative care specialist: Symptom management expertise 4, 5
• Pain management: Complex pain control strategies 3
• Psychosocial support: Child life specialists, psychology, social work 4, 5
• Spiritual care: Age-appropriate spiritual assessment and support 5
• Nursing: Daily symptom assessments, family education, care coordination 5

Team Meeting Documentation

• Record multidisciplinary case conferences with treatment strategy decisions 4, 6
• Chart family meetings with documented attendees and discussion points 4
• Note care coordination activities and role assignments 4

Quality of Life Metrics

Document the following outcomes at each visit:

• Symptom control adequacy: Specific symptoms relieved or persistent 3
• Family distress levels: Caregiver burden, relationship quality 3
• Patient's sense of control: Age-appropriate autonomy in care decisions 3
• Meaningful activities: Ability to engage in desired activities (play, school, family time) 3

Special Considerations for Pediatric Patients

Age-Appropriate Communication

• Document use of developmentally appropriate language when discussing illness with the child 5
• Chart child's understanding of their condition (when age-appropriate) 5
• Record sibling support and family dynamics 5

Anticancer Therapy Documentation

• If continuing treatment: Document that family understands goals are symptom relief and quality of life, not cure 3
• MSI-H/dMMR tumors: Chart consideration of PD-1 checkpoint inhibitors (pembrolizumab) as these may offer better quality of life than cytotoxic chemotherapy 3, 7
• Chemotherapy regimens: If used, document specific protocols (FOLFOX, FOLFIRI, capecitabine) with toxicity monitoring 3, 7
• Targeted therapy: Record bevacizumab or cetuximab use with RAS mutation status 7

Critical Pitfalls to Document

• Avoid routine surveillance imaging: Chart that CT scans and labs are symptom-driven only, not scheduled surveillance 3
• Surgical considerations: Document discussions about palliative surgery for obstruction or bleeding, with clear goals documented 6
• Cultural considerations: Record family's cultural attitudes toward death and hospice care, as acceptance varies significantly 5

Ongoing Chart Updates

• Symptom reassessment: Document at every encounter using consistent scales 3
• Medication adjustments: Chart all dose changes with rationale 3
• Goals of care evolution: Update as family's understanding and preferences change 3
• Transitions of care: Document referrals, admissions, and care setting changes with clear handoff communication 4