During this same part of last year, Amyotrophic Laterals Sclerosis (ALS) was the center of attention in the news thanks to a social media fundraiser that went viral called the “Ice Bucket Challenge.” This campaign flooded social media outlets with videos of people pouring buckets of ice over celebrities, family members and friends in order to support both the ALS Association and patients suffering from the disease.
ALS, which is more commonly known as Lou Gehrig’s Disease, is a progressive neurodegenerative illness that destroys nerve cells in the spinal cord and brain. During the disease’s normal course, patients experience atrophy (shrinking) and wasting of every voluntary muscle in their bodies, including the ones in the lungs and throat. This eventually renders them incapable of breathing on their own or swallowing. The life expectancy for people who have been diagnosed with ALS is between two and five years on average.
However, the Journal of Hospice and Palliative Nursing states that, because the disease tends to be unpredictable and advances slowly, approximately ten percent of people with ALS live longer than ten years after obtaining a diagnosis. While muscles continue to degrade, it often becomes hard for even highly dedicated caregivers to endure the burden by themselves. For this reason, hospice care is an ideal way for family caregivers to obtain the extra help and support they need, whether it’s at home or in a long-term care center.
How Hospice Can Help ALS Patients
The main purpose of hospice care is to make the patient comfortable, which can include pain relief and breathing assistance. A hospice care team, which includes aides, chaplains, nurses, social workers and volunteers, can be of great help for not only the patient but also family members who have been caring for them. Hospice care is a good option for people with ALS who have been given six or fewer months to live if the illness maintains its normal course. For families or patients who are considering hospice care, there are a handful of important factors to consider when determining eligibility:
- Impairments in function or structure.
- Nervous system structural impairments.
- Impaired mental and communicative function.
- Pain and sensory impairments.
- Impairments in mobility, movement and neuromusculoskeletal function.
- The development of secondary health problems that contribute to a fatal outcome.
- Deficits in self-care
- Limitations in activity
After a patient with ALS has entered hospice care, the team will start by visiting the patient to provide personal care, spiritual support, pain relief and companionship. Hospice care can also help to decrease the financial strain by providing necessities like wheelchairs, medical devices, beds, medications and personal care supplies.
According to Dr. Jonathan D. Glass of the Emory ALS Center, “Hospice care for the families and patients affected by ALS has long been a critical feature of end-of-life care. The compassionate, professional care given by hospice staff eases patient suffering and provides essential support for their caregivers and family members. Hospice care is a invaluable partner in the care we provide at Emory ALS Center.”