What are the key considerations for hospice recertification of a patient with Parkinson's disease (PD), including management of motor and non-motor symptoms, medication optimization, and supportive care?

Hospice Recertification for Parkinson's Disease: SOAP Note Framework

For hospice recertification in Parkinson's disease, document progressive functional decline with specific focus on motor deterioration (bradykinesia, rigidity, tremor), dysphagia with aspiration risk, recurrent infections, weight loss/malnutrition, and non-motor symptoms including cognitive impairment and neuropsychiatric features that collectively demonstrate terminal prognosis. 1, 2

Subjective Assessment

Motor Symptom Progression

• Document worsening bradykinesia, rigidity, and tremor despite optimal dopaminergic therapy (levodopa/carbidopa remains first-line but effectiveness diminishes in advanced disease) 3, 4, 1
• Assess for "off periods" - worsening symptoms when medication wears off, indicating disease progression 1, 5
• Evaluate fall frequency and circumstances, as falls are associated with substantial morbidity and mortality in advanced PD 6
• Query about freezing of gait and postural instability, which contribute to functional decline 6

Dysphagia and Nutritional Status

• Screen for swallowing difficulties, choking episodes, and aspiration events - dysphagia develops through both dopaminergic and non-dopaminergic mechanisms 6
• Document weight loss patterns and dietary intake changes - increasing levodopa doses correlate with higher malnutrition risk 6, 3, 4
• Ask about nausea, vomiting, constipation, and anorexia - common medication side effects that worsen nutritional status 6
• Assess for changes in taste and smell affecting food intake 6

Non-Motor Symptoms

• Evaluate cognitive decline and dementia symptoms - cholinesterase inhibitors may be indicated 5
• Screen for depression and anxiety - selective serotonin reuptake inhibitors or pramipexole may improve depression 5
• Document hallucinations and psychosis - clozapine is effective for hallucinations 5
• Assess sleep disturbances including REM sleep behavior disorder - melatonin is recommended treatment 4
• Query about orthostatic hypotension and sialorrhea 5

Caregiver Burden and Psychosocial Impact

• Document caregiver stress, feelings of loss, changes in roles and relationships 7
• Assess patient and family concerns about disease progression and future 7

Objective Findings

Functional Status Documentation

• Record specific ADL dependencies (feeding, bathing, dressing, toileting, transferring, continence) 2
• Document mobility status: bedbound, wheelchair-dependent, or requiring maximal assistance 2
• Measure gait speed and balance impairment if ambulatory 6

Motor Examination

• Perform UPDRS Part III motor assessment focusing on bradykinesia, rigidity, tremor amplitude, and postural reflexes 6
• Document response to current dopaminergic medications - poor response indicates advanced disease 1
• Assess for dyskinesias - involuntary movements from chronic levodopa therapy 1, 5

Nutritional Assessment

• Record current weight, recent weight loss percentage, and BMI 6
• Document signs of malnutrition: muscle wasting, temporal wasting, skin changes 6
• Check serum calcium, parathyroid hormone, magnesium, and vitamin B levels if on levodopa - hyperhomocysteinemia risk 6, 3

Vital Signs and Complications

• Document orthostatic blood pressure changes 5
• Record recent infections: aspiration pneumonia, urinary tract infections, skin infections 2
• Assess for pressure ulcers in bedbound patients 2

Cognitive Assessment

• Perform brief cognitive screening to document dementia progression 5
• Document presence and severity of hallucinations or psychosis 5

Assessment: Terminal Prognosis Criteria

Primary Indicators

• Stage 5 disease with severe motor symptoms despite optimal medical management 1, 2
• Recurrent aspiration pneumonia or severe dysphagia requiring feeding tube consideration 6
• Progressive weight loss >10% over 6 months despite interventions 6
• Bedbound or wheelchair-dependent status 2

Secondary Indicators

• Moderate to severe dementia with functional impairment 5
• Recurrent infections or sepsis 2
• Refractory neuropsychiatric symptoms 5
• Multiple comorbidities compounding decline 6, 2

Plan: Symptom-Directed Palliative Management

Medication Optimization

• Continue levodopa/carbidopa at current effective dose - remains most effective for motor symptoms even in advanced disease 3, 4, 1
• Take levodopa 30 minutes before meals to optimize absorption 3, 4
• Consider protein redistribution diet (most protein at end of day) for patients with motor fluctuations 3, 4
• Monitor for and manage medication side effects: nausea, vomiting, hypotension, hallucinations 6, 5

Dysphagia and Nutrition Management

• Optimize antiparkinsonian medications to improve motor components of swallowing 6
• Implement dietary modifications: thickened liquids, soft foods, small frequent meals 6
• Consider FEES (fiberoptic endoscopic evaluation of swallowing) for objective assessment if prognosis allows 6
• Provide artificial saliva for dry mouth: gel, spray, or dissolving tablets 6
• Avoid strict low-protein diets - risk of nutritional deficiencies without evidence-based benefit 3, 4

Respiratory Symptom Management

• For dyspnea: sitting upright, hand-held fans, relaxation techniques, breathing exercises 6
• Consider low-dose opioids (morphine) for refractory dyspnea 6
• Benzodiazepines for anxiety-associated dyspnea 6
• Note: supplementary oxygen has little benefit in advanced heart failure alone - similar principle may apply 6

Neuropsychiatric Symptom Control

• For hallucinations: clozapine is most effective 5
• For depression: SSRIs or pramipexole 5
• For anxiety: benzodiazepines (caution: sedation, fall risk, cognitive impairment) 4
• For REM sleep behavior disorder: melatonin preferred, especially in older patients 4

Pain Management

• Neuropathic pain: anticonvulsants, antidepressants, or opioids 6
• Opioid options: tramadol, oxycodone, hydromorphone, fentanyl (oral, IV, transdermal) 6
• For opioid-induced constipation: laxatives, stool softeners, methylnaltrexone 6

Fluid Management

• For edema: support stockings, leg elevation 6
• Diuretic therapy: IV or subcutaneous administration in home/hospice setting 6
• For severe congestion with hyponatremia: consider tolvaptan 6

Advance Care Planning

• Document resuscitation preferences (DNR/DNI status) 6, 7
• Address preferences for artificial hydration/nutrition 6
• Discuss place of care and death preferences 7
• Provide education about disease trajectory and expected decline 7

Interdisciplinary Support

• Coordinate with hospice team: nursing, social work, chaplaincy, home health aide 2, 7
• Provide caregiver support and respite care 2, 7
• Offer bereavement planning 2

Common Pitfalls to Avoid

• Do not discontinue levodopa abruptly - remains beneficial for symptom control even in terminal stages 3, 4, 1
• Avoid clonazepam for REM sleep behavior disorder - causes morning sedation, gait imbalance/falls, depression, and cognitive impairment 4
• Do not implement strict protein restriction - causes malnutrition without proven benefit 3, 4
• Monitor for hypocalcemia if patient has comorbid hypoparathyroidism - can worsen movement disorders and cause seizures 6
• Recognize that dopaminergic treatment effects on dysphagia are unpredictable - test individually 6