What are the primary goals and management strategies for a patient with spinocerebellar degeneration in hospice care, particularly for recertification?

Hospice Recertification SOAP Note for Spinocerebellar Degeneration

Subjective

The patient with spinocerebellar degeneration continues to meet hospice eligibility criteria based on documented irreversible functional decline, complete ADL dependence, inability to communicate meaningfully, and alignment of care with comfort-focused goals. 1

• Disease progression indicators to document:

  • Progressive worsening of ataxia, dysarthria, and dysphagia over the certification period 2, 3
  • Increasing frequency of falls or complete loss of ambulation 3
  • Declining nutritional intake and weight loss 1
  • Worsening cognitive deficits or confusion 4
  • Development or progression of autonomic symptoms (orthostatic hypotension, urinary dysfunction) 2
  • Family/caregiver report of day-to-day deterioration 5

• Symptom burden assessment:

  • Pain level using behavioral pain scales if patient cannot self-report 1, 6
  • Respiratory distress or secretion management needs 1, 6
  • Behavioral symptoms including agitation, anxiety, or depression 1, 5
  • Skin integrity concerns related to immobility 1

• Goals of care confirmation:

  • Reaffirm patient/family understanding that disease is terminal with life expectancy less than 6 months 1
  • Document continued preference for comfort-focused care over life-prolonging interventions 7, 6
  • Confirm DNR/DNI status and preferences regarding hospitalization 1, 6

Objective

Document measurable functional decline demonstrating terminal trajectory:

• Functional status:

  • Bedbound or chair-bound status 1
  • Complete dependence for all ADLs (bathing, dressing, toileting, transferring, feeding) 1
  • Karnofsky Performance Status ≤40% or Palliative Performance Scale ≤40% 1

• Neurological examination:

  • Severe ataxia with inability to perform coordinated movements 2, 3
  • Dysarthria progressing to inability to communicate verbally 3, 4
  • Dysphagia with aspiration risk or refusal of oral intake 1
  • Cognitive impairment or altered level of consciousness 4
  • Pyramidal signs, spasticity, or hyperkinetic movements 2, 3

• Nutritional status:

  • Weight loss >10% over 6 months or BMI <18 1
  • Albumin <2.5 g/dL if recent labs available 1
  • Decreased oral intake requiring hand-feeding or comfort feeding only 1

• Comorbidities and complications:

  • Recurrent aspiration pneumonia 1
  • Pressure ulcers (stage and location) 1
  • Contractures limiting positioning 1
  • Urinary or fecal incontinence 1

Assessment

This patient with spinocerebellar degeneration demonstrates continued decline consistent with terminal illness and life expectancy of less than 6 months, meeting criteria for hospice recertification. 1

• Primary diagnosis: Spinocerebellar degeneration (specify type if known: SCA1-3,6-8, etc., or multiple system atrophy) 2, 3

• Terminal prognosis indicators present:

  • Progressive functional decline with complete ADL dependence 1
  • Bedbound status requiring total care 1
  • Inability to communicate meaningfully 1, 4
  • Nutritional compromise with weight loss and decreased intake 1
  • Recurrent complications (aspiration, infections, skin breakdown) 1

• Active symptom management needs:

  • Pain requiring opioid titration 1, 6
  • Respiratory secretions requiring anticholinergic therapy 1
  • Behavioral symptoms requiring environmental modification and/or pharmacologic intervention 1, 5
  • Skin integrity requiring wound care 1

• Psychosocial/spiritual assessment:

  • Family demonstrates understanding of terminal nature and prognosis 1, 6
  • Anticipatory grief support needs identified 1
  • Spiritual care needs addressed per patient/family values 1, 6

Plan

Continue aggressive symptom management focused on comfort and quality of life, avoiding burdensome interventions that do not serve comfort goals. 6

Symptom Management

• Pain control:

  • Continue scheduled opioids with PRN dosing for breakthrough pain 1, 6
  • Use behavioral pain assessment tools at each visit given communication impairment 1
  • Titrate medications based on observed comfort rather than vital signs 6

• Respiratory symptoms:

  • For secretions: Scopolamine patch 1.5 mg every 72 hours, atropine 1% ophthalmic solution 1-2 drops sublingual every 4 hours PRN, or glycopyrrolate 0.2-0.4 mg IV/SC every 4 hours PRN 7, 1
  • For dyspnea: Morphine 2-5 mg PO/SL/SC every 2-4 hours PRN, with dose titration as needed 6
  • Avoid suctioning unless absolutely necessary for comfort 7

• Behavioral symptoms:

  • First-line: Environmental modifications including quiet environment, familiar objects, predictable routines 5
  • Pharmacologic: Lorazepam 0.5-1 mg PO/SL every 6-8 hours PRN for anxiety/agitation 1
  • Consider low-dose antipsychotics (haloperidol 0.5-2 mg PO/SC every 4-6 hours PRN) only if non-pharmacologic measures fail 1

• Skin integrity:

  • Pressure redistribution every 2 hours 1
  • Barrier creams for incontinence 1
  • Wound care per hospice protocol for existing pressure injuries 1

Nutritional Approach

Comfort feeding only—artificial nutrition and hydration are not indicated and contradict comfort-focused goals. 1, 6

• Hand-feed small amounts of preferred foods as tolerated 1
• Recognize that decreased intake is part of natural dying process 1, 6
• Provide fluids as tolerated but do not pursue IV or subcutaneous hydration in terminal phase 1, 6
• Educate family that forcing food/fluids increases aspiration risk and discomfort 1

Medication Simplification

Discontinue all medications that do not directly serve comfort goals. 7, 6

• Stop statins, antihypertensives, diabetes medications, and other preventive therapies 7, 6
• Discontinue taltirelin or protirelin if previously prescribed for ataxia symptoms, as disease-modifying intent no longer aligns with hospice goals 2
• Eliminate routine laboratory monitoring and vital sign checks unless needed to guide symptom management 7, 6
• Simplify medication administration routes to oral, sublingual, transdermal, or subcutaneous 7, 1

Psychosocial and Spiritual Support

• Family education:

  • Provide ongoing education about disease progression and what to expect in final weeks/days 1, 5
  • Discuss signs of imminent death: rapid day-to-day deterioration, completely bedbound, lapses into unconsciousness 5
  • Offer anticipatory grief counseling and bereavement resources 1, 6

• Spiritual care:

  • Engage chaplaincy services based on patient/family values and preferences 1, 6, 5
  • Support meaningful rituals and opportunities for family to say goodbye 5
  • Address existential concerns and facilitate life review if patient able to participate 8

Care Coordination

• Interdisciplinary team involvement:

  • Weekly IDT meetings to reassess symptom burden and adjust interventions 1, 6
  • Regular communication between hospice nurse, physician, social worker, chaplain, and aide 7, 1
  • Ensure family knows who to contact 24/7 for urgent concerns 7

• Avoid hospitalizations:

  • Manage acute events (infections, respiratory distress) at home with hospice support unless absolutely necessary for comfort 7, 1
  • Do not pursue diagnostic testing or interventions that do not directly inform comfort measures 7, 6

Critical Pitfalls to Avoid

• Do not continue disease-modifying therapies (taltirelin, protirelin, muscle relaxants for spasticity) that no longer serve comfort goals 2
• Do not pursue tube feeding—it does not improve outcomes in advanced neurologic disease and increases aspiration risk 1
• Do not delay symptom management waiting for "the right time"—aggressive comfort measures should be implemented immediately 6
• Do not use metoclopramide if bowel obstruction suspected, as it increases GI motility and worsens symptoms 7
• Avoid physical restraints for wandering or agitation—use environmental modifications and minimal pharmacologic intervention instead 7, 5

Next recertification assessment in 60-90 days, or sooner if significant change in condition. 1