When is Hospice Recommended for ALS Patients?
Hospice is recommended for ALS patients when the disease has progressed to the point that life expectancy is estimated at six months or less and the focus shifts from curative treatment to comfort care. Families often call hospice when breathing becomes difficult, swallowing declines, mobility is severely limited, or caregiving needs exceed what can safely be managed at home.
When to call hospice for ALS patients.
You may want to call hospice if your loved one with ALS is experiencing:
- Frequent breathing difficulties or shortness of breath
- Increased need for ventilator support
- Recurrent aspiration pneumonia
- Significant weight loss due to swallowing problems
- Severe difficulty speaking or communicating
- Complete dependence for bathing, dressing, and mobility
- Rapid functional decline
- Repeated hospitalizations
If your loved one’s ALS symptoms are worsening and daily care has become overwhelming, it may be time to speak with a hospice provider.
Hospice eligibility for ALS patients.
Hospice care is appropriate for an ALS patient diagnosed with six months or less to live if the disease continues its usual progression. For patients or families considering the support of hospice, there are a few key things to look for in determining whether the patient may be eligible:
- Severe muscle weakness or paralysis that makes movement extremely limited
- Difficulty breathing, shortness of breath at rest, or increased use of breathing machines (BiPAP or ventilator support)
- Frequent choking or trouble swallowing, increasing the risk of aspiration
- Significant weight loss or difficulty maintaining nutrition
- Recurrent infections, such as pneumonia
- Inability to bathe, dress, eat, or use the bathroom without full assistance
- Difficulty speaking or communicating needs
- Rapid overall decline in strength or function
- Increasing pain or discomfort that is difficult to manage at home
How hospice helps ALS patients and families
The goal of hospice care is to provide comfort, which includes relief from pain and breathing difficulties. The team approach of hospice care with visiting nurses, aides, chaplains, volunteers and social workers can be great support for not just the pain, but for families who have been providing at-home care.
Once an ALS patient is admitted to hospice, the care team will begin making visits to provide relief from pain, personal care, companionship, and emotional and spiritual support.
Hospice can also help ease financial burdens by providing medication and medical devices such as beds, wheelchairs and other personal care items.
“The availability of hospice services for patients and families suffering with ALS has been an important addition to end of life care for ALS patients,” says Dr. Jonathan D. Glass of the Emory ALS Center. “The professional and compassionate care provided by hospice nurses and staff eases the way for our patients, and offers needed support for families and caregivers. Hospice is an important and embedded partner in our multidisciplinary care at the Emory ALS Center.”
If you know someone with ALS and are unsure when to call hospice, take the hospice quiz to help assess their needs. Crossroads Hospice & Palliative Care provides specialized care and support for ALS patients and their families, contact us now, or give us a call at 855-327-4677.