Amyotrophic lateral sclerosis, which is known as ALS or Lou Gehrig’s Disease, is a disease of the nervous system which leads to the breakdown of nerve cells over time. Among other notable effects, this causes muscle weakness and immobility. This review discusses when hospice care for ALS is recommended and when a patient with ALS is eligible for hospice.
When Is An ALS Patient Eligible For Hospice Care?
In the early stages of ALS, the patient is able to function much the same as they could before diagnosis. However, as the disease progresses, their ability to function and the level of discomfort they experience can increase, requiring more care and support to ensure an optimal quality of life. The following is an overview of what signs indicate a patient with ALS is ready and eligible for hospice care.
The Patient Has Lost Most Or All of Their Mobility
One of the biggest obstacles ALS patients and their families must overcome in the late stages of ALS is a loss of mobility. Specifically, this means they are unable to move around on their own and as they desire, which can lead to frustration for the patient and more of a responsibility for their family members or the primary caregiver. Eventually, the limited mobility progresses to needing a wheelchair to get around each day, and some may require assistance getting around with a wheelchair as well.
Hospice care assists ALS patients that have lost the majority or all of their mobility and require a wheelchair to move around. Hospice care also assists with other activities of daily living as well, such as bathing and taking prescribed medications.
The Patient Is Dependent On Others For Everyday Tasks
As mentioned, a lack of mobility caused by ALS can lead to a struggle with activities of daily living such as moving around, cooking, cleaning, bathing, and eating. However, these activities of daily living (known as ADLs) may become more challenging even if the patient is able to move around on their own.
In addition to assisting with symptom management and meeting the emotional and spiritual needs the patient and their immediate family have, hospice care can allow patients who are diagnosed with ALS and having difficulties with activities of daily living function each day. This may include daily visits from a hospice care nurse, meal plans, and more.
The Patient’s Speech Has Deteriorated And Can No Longer Communicate Effectively
It can be a challenge to understand the needs of a loved one with ALS if they can no longer communicate with you in an optimal manner. Hospice care workers understand the unique challenges that ALS presents, and they can help keep your loved one feeling comfortable and as pain-free as possible without them having to verbally communicate how they are feeling and their needs. This can provide peace of mind for family members knowing that they are getting the proper care for their symptoms.
Frequently Asked Questions About Hospice Care For ALS
To provide a more in-depth understanding of hospice care for ALS patients and their families, the following are answers to frequently asked questions families have.
What Are The Goals Of Hospice Care for ALS?
The primary goal of hospice care for a patient with ALS is to give them the best quality of life possible. Specifically, this is accomplished by reducing their pain through medication, therapy, and other techniques, managing their diet and breathing, providing them and their immediate family counseling and companionship, and assisting with paperwork, such as financial paperwork and arrangements after they pass (e.g. funeral arrangements, grief counseling, etc.).
How Long Is Hospice Care Intended To Last?
Hospice care is primarily for patients who have a life expectancy of six months or less. This typically comes in the later stages of ALS when they can no longer move around on their own and perform activities of daily living. Otherwise, palliative care may be a more preferable solution. To find out if your loved one is eligible for hospice care, you should speak with a hospice professional or insurance provider.
How Quickly Does ALS Progress In Later Stages?
The disease progresses at a different rate with each patient. On average, the survival time for someone with ALS is between two and five years. However, some patients live for a decade or more with the disease. The effects of the disease are minor to begin with and progress over time to large-scale muscle weakness and paralysis in the later stages.
Contact Harbor Light Hospice To Create A Hospice Care Plan
If you or a loved one is diagnosed with ALS and in need of hospice care services, call Harbor Light Hospice today to learn more. Our dedicated and friendly team prides itself in assisting ALS patients and their families, helping to ensure an optimal quality of life is achieved during the progressive stages of ALS.