Hospice referral for those with late-stage Huntington’s disease should weigh experienced clinical judgement, Functional Assessment Staging (FAST scale) guidelines and input from family members.
Patients will typically be considered to be eligible if they meet both 1 and 2 below:
1. Stage 7 or beyond according to the Functional Assessment Staging Scale with all of the following:
- Inability to ambulate without assistance
- Inability to dress without assistance
- Urinary and fecal incontinence, intermittent or constant
- No consistent meaningful verbal communication
2. Has had at least one of the following conditions within the past 12 months:
- Aspiration pneumonia
- Pyelonephritis or other upper urinary tract infection
- Multiple stage-3 or stage- (pressure) ulcers
- Toxoplasmosis unresponsive to therapy
- Fever, recurrent after antibiotics
- Inability to maintain sufficient fluid and caloric intake with one or more of the following during the preceding 12 months:
- 10% weight loss during the previous six months
- Serum albumin < 2.5 gm/dl
- Significant dysphagia with associated aspiration measured objectively, for example, swallowing test or a history of choking or gagging with feeding
In the absence of one or more of these findings, rapid decline or comorbidities may also support eligibility for hospice care.
Hospice medical directors or clinical services directors at our local Compassus programs are available to share their experience.