What hospice care order is recommended for a 54-year-old female patient with Huntington's disease?

Hospice Care Orders for a 54-Year-Old Female with Huntington's Disease

For a 54-year-old female with Huntington's disease, hospice care should be initiated with a focus on comprehensive symptom management, advance care planning, and support for both patient and family.

Eligibility Assessment

Huntington's disease (HD) is a progressive neurodegenerative disorder with no cure, characterized by motor dysfunction, cognitive decline, and psychiatric symptoms. At 54 years of age with advanced symptoms, this patient meets hospice eligibility criteria based on:

• Progressive functional decline and dependence in activities of daily living
• Severe symptoms affecting quality of life despite optimal therapy
• Life expectancy potentially less than 6 months if the disease has reached advanced stages

Specific Hospice Care Orders

Symptom Management

1. Motor Symptom Control:

   • Tetrabenazine for chorea management (if not already prescribed) 1
   • Consider dopamine receptor blocking agents for severe chorea 2
   • Physical therapy consultation for positioning and comfort measures

2. Pain Management:

   • Start with non-opioid analgesics for mild pain
   • For moderate to severe pain: Morphine 2.5-10 mg PO q4h PRN 3
   • For breakthrough pain: Morphine 1-3 mg IV q1h PRN 3

3. Respiratory Symptom Management:

   • For dyspnea: Morphine as above plus oxygen if hypoxic 3
   • Scopolamine 0.4 mg SC q4h PRN for secretions 3
   • Alternative for secretions: Atropine 1% ophthalmic solution 1-2 drops SL q4h PRN 3

4. Psychiatric Symptom Management:

   • For anxiety: Lorazepam 0.5-1 mg PO q1h PRN 3
   • For depression: Consider venlafaxine (shown effective in HD patients) 1
   • For agitation: Olanzapine 2.5-5 mg PO at bedtime 3
   • For insomnia: Trazodone 25-100 mg PO at bedtime 3

Advance Care Planning

1. Documentation Requirements:

   • Complete hospice-specific DNR/DNI orders
   • Document patient's preferences regarding artificial nutrition/hydration
   • Address preferences regarding hospitalization
   • If patient has an implantable defibrillation device, document deactivation preferences 3

2. Decision-Making Support:

   • Identify healthcare proxy/surrogate decision-maker
   • Document patient values and preferences in accessible location in medical record 3
   • Consider POLST/MOLST form completion 3

Psychosocial and Spiritual Support

1. Patient Support:

   • Schedule regular hospice social worker visits
   • Offer chaplain/spiritual support based on patient preference
   • Provide psychological counseling focused on end-of-life concerns

2. Family Support:

   • Schedule family meetings to address caregiver needs
   • Provide education on disease progression and what to expect
   • Offer bereavement counseling 4

Practical Support

1. Home Care Orders:

   • Durable medical equipment: Hospital bed, pressure-relieving mattress, bedside commode
   • Assistive devices for feeding and communication
   • Safety assessment of home environment

2. Nutrition and Hydration:

   • Dysphagia assessment and management plan
   • Dietary consultation for texture-modified diet if appropriate
   • Oral care protocol

Care Coordination

1. Interdisciplinary Team Approach:

   • Weekly team meetings to review care plan
   • Designate primary hospice nurse and physician
   • Include neurologist consultation as needed

2. Visit Schedule:

   • Nursing visits: 2-3 times weekly, adjusting based on symptom burden
   • Social worker: Weekly
   • Home health aide: Daily for personal care
   • Additional disciplines as needed

Common Pitfalls to Avoid

1. Delayed Referral: HD patients are often referred to hospice very late in disease. Early referral improves quality of life 1, 4.

2. Inadequate Symptom Control: HD patients commonly experience pain, anxiety, and respiratory symptoms that may be undertreated 1.

3. Overlooking Psychiatric Symptoms: Depression, anxiety, and psychosis are common in HD and require specific attention 2.

4. Neglecting Family Support: HD has profound impacts on families who often serve as caregivers for years and need substantial support 5.

5. Communication Barriers: As HD progresses, communication becomes difficult. Establish communication methods early and document preferences while the patient can express them 4.

By implementing this comprehensive hospice care plan, we can provide appropriate end-of-life care focused on comfort, dignity, and quality of life for this patient with advanced Huntington's disease.