Hospice care provides specialized care and support for individuals with a terminal illness, such as ALS. It addresses the physical, emotional, and spiritual needs of the patient and their family, and can be provided in the patient’s home or in a hospice facility. Eligibility for hospice care is determined by a medical evaluation and Medicare guidelines. Hospice care provides physical comfort, emotional and spiritual support, and family support to those facing the end of life.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord. The disease leads to muscle weakness, mobility loss and eventually respiratory failure. As the disease progresses, patients may become increasingly dependent on others for care and support. Due to this, determining eligibility for hospice and palliative care is important for ALS patients and their families.
The eligibility guidelines for hospice and palliative care vary by organization and insurance, but generally require that the patient have a prognosis of six months or less to live if the disease runs its normal course. This determination is usually made by the patient’s physician, who must certify that the patient’s condition is terminal and that curative treatment is no longer possible or desired. It is important for patients and their families to understand the criteria for hospice and palliative care, as well as the benefits and limitations of these services, in order to make informed decisions about end-of-life care.
– ALS tends to progress in a linear fashion over time. Thus, the overall rate of decline in each patient is fairly constant and predictable, unlike many other non-cancer diseases.
– No single variable deteriorates at a uniform rate in all patients. Therefore, multiple clinical parameters are required to judge the progression of ALS.
– Although ALS usually presents in a localized anatomical area, the location of initial presentation does not correlate with survival time. By the time patients become end-stage, muscle denervation has become widespread, affecting all areas of the body, and initial predominance patterns do not persist.
– Progression of disease differs markedly from patient to patient. Some patients decline rapidly and die quickly; others progress more slowly. For this reason, the history of the rate of progression in individual patients is important to obtain to predict prognosis.
– In end-state ALS, two factors are critical in determining prognosis: ability to breathe, and to a lesser extent ability to swallow. The former can be managed by artificial ventilation, and the latter by gastrostomy or other artificial feeding, unless the patient has recurrent aspiration pneumonia. While not necessarily a contraindication to Hospice Care, the decision to institute either artificial ventilation or artificial feeding will significantly alter six-month prognosis.
– Examination by a neurologist within three months of assessment for hospice is advised, both to confirm the diagnosis and to assist with prognosis.
Criteria: 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. (Should fulfill 1, 2, or 3).
1. Patient should demonstrate critically impaired breathing capacity. – Critically impaired breathing capacity as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
– Vital capacity (VC) less than 30% of normal (if available); – Dyspnea at rest;
– Patient declines mechanical ventilation; external ventilation used for comfort measures only.
2. Patient should demonstrate both rapid progression of ALS and critical nutritional impairment.
– Rapid progression of ALS as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification: – Progression from independent ambulation to wheelchair to bed bound status;
– Progression from normal to barely intelligible or unintelligible speech;
– Progression from normal to pureed diet;
– Progression from independence in most or all activities of daily living (ADLs) to needing major assistance by caretaker in all ADLs.
– Critical nutritional impairment as demonstrated by all the following characteristics occurring within the 12 months preceding initial hospice certification:
– Oral intake of nutrients and fluids insufficient to sustain life;
– Continuing weight loss;
– Dehydration or hypovolemia;
– Absence of artificial feeding methods, sufficient to sustain life, but not for relieving hunger.
3. Patient should demonstrate both rapid progression of ALS and life-threatening complications.
– Rapid progression of ALS, see 2.a above.
– Life-threatening complications as demonstrated by one of the following characteristics occurring within the 12 months preceding initial hospice certification:
– Recurrent aspiration pneumonia (with or without tube feedings);
– Upper urinary tract infection, e.g., pyelonephritis;
– Recurrent fever after antibiotic therapy;
– Stage 3 or 4 decubitus ulcer(s).
The criteria for hospice care for ALS patients are designed to ensure that patients receive the appropriate level of care and support during the end-of-life stage. It’s important for patients and their families to understand the criteria and how it’s applied to ALS patients to make informed decisions about end-of-life care. This includes the information provided by the Medicare Coverage Database (CMS.gov) on the specific nature of ALS, its progressive nature and how it impacts different aspects of the patient’s life. The general considerations and criteria mentioned in the CMS.gov guidelines serve as a useful tool for healthcare professionals to predict the progression and prognosis of the disease in individual patients and provide them with the appropriate level of care and support.
Living with ALS can be a challenging and difficult experience, not only for the patient but also for their loved ones. It’s important for patients and their families to have access to support and resources that can help them cope with the physical, emotional, and practical challenges of the disease.
There are several organizations and support groups that provide information, resources, and support for people living with ALS and their families. These resources include educational materials and brochures, online support groups, and in-person support groups. Some of the organizations that provide support for ALS patients and their families include the ALS Association, the Muscular Dystrophy Association, and the ALS Hope Foundation.