Under the best of circumstances, medical prognoses can be difficult to predict, and perhaps even more so for people with ALS. By the time patients become end stage, muscle deterioration has become widespread, affecting all areas of the body; although initial predominance patterns do not persist. In end-stage ALS, two factors are critical in determining prognosis: ability to breathe, and to a lesser extent ability to swallow. Patients will be considered to be in the terminal stage of ALS (life expectancy of six months or less) if they meet the following criteria (must fulfill 1, 2 or 3).
1. The patient must demonstrate critically impaired breathing capacity:
2. Critically impaired breathing capacity as demonstrated by all of the following characteristics occurring within the 12 months preceding initial hospice certification
3. Vital capacity (VC) less than 30% of normal
4. Significant dyspnea at rest
Requiring supplemental oxygen at rest
1. Patient declines artificial ventilation
2. Patient must demonstrate both rapid progression of ALC and critical nutritional impairment:
3. Rapid progression of ALS as demonstrated by all of the following characteristics occurring within the 12 month preceding initial hospice certification:
4. Progression from independent ambulation to wheelchair or bedbound status
5. Progression from normal barely intelligible or unintelligible speech
Progression from normal to pureed diet
1. Progression from independent in most or all activities of daily living (ADL) to needing major assistance by caretaker in all ADLs.
2. Critical nutritional impairment as demonstrated by all of the following characteristics occurring within the 12 months preceding initial hospice certification
3. Oral intake of nutrients and fluids insufficient to sustain life
4. Continuing weight loss
Dehydration or hypovolemia
1. Absence of artificial feeding methods
2. Patient must demonstrate both rapid progression of ALS and life-threatening complications:
3. Life-threatening complications as demonstrated by one of the following characteristics occurring within the 12 months preceding initial hospice certification
4. Recurrent aspiration pneumonia (with or without tube feedings)
5. Upper urinary tract infection, e.g. pyelonephritis
1. Recurrent fever after antibiotic therapy
More often than not, hospice is not contacted soon enough causing patients and families to miss out on the wide range of support services hospice provides. One of the unsung benefits of hospice is that it allows family caregivers to receive added support and return to their respective family positions to focus on enjoying quality time together.
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