ALS, also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease, is a terminal illness that progresses in stages after a diagnosis. At the end stages of ALS, hospice care can help the patient maintain personal dignity and enjoy the best possible quality of life after stopping medical intervention.
When Is an ALS Patient Eligible for Hospice Care?
Because ALS is a progressive disease that can take anywhere from a few months to a few years to reach the final stages, determining when to pursue hospice care can be complicated. A doctor typically needs to refer the patient to hospice care, and this is done when the patient has a life expectancy of 6 months or less.
During the later stages of ALS, patients often use a feeding tube or ventilator to assist with breathing. The decision to halt the use of these assistive devices, or to choose not to start using them at all, is generally considered an indicator of the need for hospice care. Some other things that might make a family consider hospice care for a patient with ALS include:
- The patient is confined to bed or has a complete loss of mobility and must use a wheelchair whenever not in bed
- The patient has become totally dependent on others for everyday tasks such as grooming, bathing and eating
- Speech function has deteriorated to the point that the patient can’t communicate with family members or caretakers
How Long Is Hospice Care for ALS?
Hospice care is intended to last 6 months or less, and this is true for ALS patients as well as patients with other terminal illnesses. For ALS patients who have a life expectancy of more than 6 months and who are continuing to use medical devices such as ventilators and feeding tubes, palliative care may be an option. Palliative care offers many of the same benefits as hospice care but is intended for patients who wish to continue treatment for their disease.
How Quickly Does ALS Progress?
The rate of progression of ALS varies from patient to patient. In some cases, ALS progresses rapidly and the patient’s health declines within months. Other ALS patients live for decades with the illness. The mean survival time for someone with ALS is between 2 and 5 years, according to the ALS Association. Individual patients also experience the onset and progression of symptoms differently. Some patients may experience trouble with walking and mobility first, while others might notice difficulty swallowing and breathing before overall mobility is affected. Eventually, most patients progress to large-scale muscle weakness and paralysis by the end stages of the disease.
The Benefits of Hospice Care for Patients with ALS
The team-oriented approach of hospice care ensures patients with ALS receive support in all areas, including physical, psychological, spiritual and emotional realms. Some specific benefits of hospice care for end-stage ALS patients include:
The Ability to Receive Care in a Familiar Setting
Hospice care is typically provided at the location where the patient resides. This might be the patient’s home, a family member’s home or an assisted living facility. Remaining in a familiar location helps relieve stress during the final weeks or months of life.
The hospice team works closely with the patient’s regular physician to manage symptoms and keep the patient comfortable. A hospice team manager coordinates visits from nurses, hospice aides, volunteers and other hospice staff to ensure the patient’s needs are met. Hospice staff can also set up and manage any necessary medical equipment and supplies.
Physical Assistance With Everyday Tasks
ALS makes many daily tasks more difficult, and hospice care can help with everything from personal grooming to managing breathing difficulties. Nurses and home health aides may help patients eat, provide wound care and take care of regular household tasks such as cleaning and cooking.
Emotional and Spiritual Support
A hospice team includes various members, such as social workers, chaplains and volunteers, who provide emotional and spiritual support for patients in hospice care.
Support for Family Caretakers
Family caretakers can become overwhelmed caring for a patient with ALS. Hospice staff can relieve the burden, helping family members spend more quality time with their loved ones instead of focusing on day-to-day caretaking tasks. The hospice care team may also offer caregiver education to help family members better care for the ALS patient and know what to expect as the disease progresses. Family support also includes bereavement counseling after the loved one’s death.
Creating a Hospice Plan of Care for End-Stage ALS
A hospice care plan for end-stage ALS includes a wide range of services designed to help maintain the patient’s psychological, physical and mental well-being. Because the progression of the disease varies between patients, care is tailored to the individual. During end-stage ALS, the hospice care team at Three Oaks Hospice can help with:
- Reducing pain through medication or alternative methods
- Addressing skin care issues, including pressure sores in bedridden patients
- Managing breathing and feeding difficulties after the cessation of feeding tubes or artificial ventilation
- Providing companionship and counseling to help patients deal with depression, anxiety, loneliness and other mental health issues brought on by an ALS diagnosis and disease progression
- Assistance completing financial and legal paperwork and managing finances
Preparing for hospice before it becomes an immediate concern helps make the transition easier for everyone. Talk to your loved one’s doctor about the progression of ALS and what specific issues might indicate that hospice care is appropriate. Some patients may prefer to avoid being placed on a ventilator or feeding tube, while others may have a specific timeline for remaining on assistive devices before considering hospice.
Contact Three Oaks Hospice for more information about hospice services for end-stage ALS patients and how to talk to your doctor about the right time to start hospice care.