Hospice can be a very scary word to hear, especially after being diagnosed with a devastating disease like ALS. For an individual with ALS, hospice has a completely different look and feel than it does with other terminal diseases. Because hospice provides an extra layer of care and support that a family affected by ALS truly needs, it’s not uncommon for a patient with ALS to be referred to a hospice program early on in the disease process.
The focus of hospice care is to provide patients with compassionate support, rather than to administer life-prolonging treatments. Hospice staff and volunteers work with the patient, the patient’s doctors, and the patient’s family to coordinate end-of-life care. This includes administering medication, taking care of hygiene needs, and handling minor medical procedures, and can be offered in the patient’s home, in a hospice center, a hospital, or a long-term care facility such as a nursing home. Often hospice services offer valuable support and counseling services to family members as well.
Following are several myths about hospice. As always, if you have any questions about care, please visit The ALS Association St. Louis Regional Chapter website, or call our office at 314-432-7257.
Myths about Hospice
MYTH: Once a person is on hospice care, they must remain home bound.
TRUTH: Hospice agencies actually encourage the patient to live as fully as possible – doing things they enjoy and things they have always wanted to do. For insurance purposes, it is important to discuss with your chosen hospice agency what medical services they will cover and which ones will become an out of pocket expense.
MYTH: Hospice is 24/7 care in your home.
TRUTH: Hospice services vary from agency to agency. Typically, if enrolled in services, you will have access to a hospice nurse 24 hours a day 7 days a week, but you may still need to arrange for other medical and custodial care. This would depend on how your hospice benefits are outlined through your insurance benefits.
MYTH: You must be imminently dying to be eligible for hospice services.
TRUTH: Due to the nature of ALS and the fact that it is a terminal disease, many individuals are entitled to benefits just because they have the diagnosis. Enrolling in hospice services does not mean you have less than six months to live. It only means you are setting up another line of defense on your care team.
MYTH: Hospice means you are giving up.
TRUTH: Hospice does not mean you are giving up. Making the decision early on to enroll in hospice allows the patient and the family to establish rapport with their hospice team as well as to become familiar with what programs and services are available through the agency they have chosen to work with. This also helps the hospice team to make recommendations for services and programs as needs arise, and helps provide an additional layer of support for both the patient and family.
ALS is a progressive illness. Because there are limited medical treatments available to persons with ALS, hospice is used proactively so that individuals can receive the full benefits that this service provides. Hospice does not mean that the end is near; it means the disease has reached a point where palliative care can offer you more support.
Choosing end of life care is a highly personal decision, and one that should be undertaken with great considration. Please consult your ALS care services coordinator or your healthcare provider for help in understanding your choices.
Visit www.alsa-stl.org for more information on resources available to people with ALS and their families.