What are the recommended components of the initial home palliative visit?

Initial Home Palliative Care Visit: Essential Components

The initial home palliative care visit must systematically address six core domains: comprehensive symptom assessment using validated tools, clarification of patient goals and treatment preferences, advance care planning, psychosocial and spiritual needs assessment, caregiver support evaluation, and coordination of care with the interdisciplinary team. 1, 2

Primary Assessment Domains

1. Goals of Care Discussion (Conduct First)

• Begin by eliciting the patient's personal goals and expectations for treatment before conducting symptom assessment, as this promotes patient-centered care and guides all subsequent interventions 1
• Assess the patient's understanding of their illness prognosis and whether they recognize their condition as incurable (if applicable) 1, 3
• Clarify preferred location of death, as home and hospice are the most desired end-of-life locations for most patients 1
• Document treatment preferences regarding life-prolonging interventions versus comfort-focused care 1

2. Comprehensive Symptom Assessment

Use validated instruments to assess symptoms systematically, as this improves symptom detection and treatment frequency 1

Evaluate the following symptoms with severity scoring:

• Pain intensity, location, quality, and exacerbating/relieving factors using standardized pain scales 1
• Dyspnea severity and triggers 1, 4
• Anxiety and depression using validated tools (Hospital Anxiety and Depression Scale or Patient Health Questionnaire-9) 5
• Fatigue and sleep disturbances 1, 4
• Nausea, constipation, and loss of appetite 4, 6
• Delirium screening in appropriate patients 1

The Edmonton Symptom Assessment Scale (ESAS) is effective for tracking symptom burden over time in homebound patients 4

3. Functional Status Evaluation

• Assess activities of daily living and instrumental activities of daily living capacity 7
• Document performance status using the Palliative Performance Scale (PPS), particularly noting if ≤50%, which indicates significant functional impairment 8
• Evaluate mobility, fall risk, and need for durable medical equipment 2
• Screen for frailty using the Clinical Frailty Scale, especially in geriatric patients, as frailty predicts difficult convalescence and higher mortality 1

4. Advance Care Planning

Initiate advance care planning discussions immediately at the first visit, not when treatment options are exhausted 3

Address:

• Healthcare proxy designation and power of attorney documentation 3
• Code status preferences (DNR/DNI decisions) 3, 6
• Completion or review of advance directives, recognizing these often don't address acute situations and require interpretation with family 1
• Preferred interventions (hospitalization, emergency department visits, feeding tubes, dialysis) 1

Patients who have higher proportions of visits addressing advance care planning are more likely to use hospice appropriately 5

5. Psychosocial and Spiritual Assessment

Evaluate all four dimensions of suffering: physical, psychological, social, and spiritual 1

• Screen for anxiety, depression, and existential distress using validated instruments 1, 5
• Assess caregiver burden, coping capacity, and support systems 1, 2
• Identify spiritual or religious concerns, meaning-making, and unfinished business 1, 6
• Evaluate financial concerns and insurance coverage for medications and equipment 1
• Screen for family discord, communication barriers, or requests for hastened death that warrant specialty palliative care consultation 7

Addressing coping during visits is associated with improved quality of life and reduced depression symptoms at 24 weeks 5

6. Medication Reconciliation and Management

• Complete comprehensive medication review, identifying potentially inappropriate medications 1
• Assess adequacy of current symptom management regimens 4
• Prescribe opioids for refractory pain or dyspnea as the cornerstone of symptom management, with consideration of adjuvant agents to limit constipation 8, 3
• Avoid aggressive medication titration in frail patients to prevent hypotension and adverse effects 8
• Ensure availability of rescue medications for breakthrough symptoms 2

7. Care Coordination and Team Communication

Establish integrated teamwork as the foundation of home palliative care 2

• Identify all current healthcare providers and establish communication pathways 1, 6
• Maintain communication with specialty services (oncology, neurology, cardiology) to ensure accurate assessment of disease trajectory 8, 7
• Coordinate with home health agencies, durable medical equipment vendors, and pharmacy services 2
• Establish 24/7 on-call availability for urgent symptom management 2
• Schedule follow-up visit frequency (typically monthly minimum for early palliative care) 1, 5

8. Patient and Family Education

Provide timely and responsive education about illness trajectory and what to expect 2

• Explain the natural history of the patient's specific condition and anticipated prognosis 3
• Educate on symptom management strategies and when to call for help 2
• Prepare family for signs of approaching death and physical changes to expect 9
• Discuss hospice eligibility criteria and services available 1, 7

Documentation Requirements

Document the following in the medical record:

• Prognosis assessment (use the "surprise question": "Would you be surprised if this patient dies within 6 months?") 7, 3
• Specific treatment goals aligned with patient values 1
• Symptom severity scores using validated instruments 1
• Functional status with objective measures 8
• Advance directive status and code preferences 3
• Caregiver assessment and support needs 1

Common Pitfalls to Avoid

• Do not delay palliative care discussions until the patient is actively dying or treatment options are exhausted, as early integration (within 8 weeks of advanced disease diagnosis) improves outcomes 1, 3
• Do not assume patients understand their prognosis—69% of patients with advanced lung cancer and 81% with advanced colorectal cancer incorrectly believed palliative chemotherapy could cure them 1
• Do not skip goals of care discussion in favor of jumping directly to symptom management, as understanding patient goals must guide all interventions 1
• Do not overlook caregiver burden assessment, as caregivers are at high risk for physical and psychological distress 1, 2
• Prognostic uncertainty should not delay referral or comprehensive assessment 7

Timing of Specialty Consultation

Consult specialty palliative care for:

• Refractory symptoms despite optimal management 7
• Complex psychosocial situations (family discord, requests for hastened death, spiritual crisis) 7
• Communication barriers or difficulty with advance care planning 7
• High distress scores or cognitive impairment complicating care 7

Follow-Up Planning

• Schedule next visit within 3 weeks for patients with moderate to severe symptoms, as significant symptom reduction occurs by this timepoint 4
• Establish criteria for urgent home visits versus telephone management 2
• Plan for reassessment of goals and advance directives at regular intervals, especially with disease progression 1