HOSPICE CARE FOR ALS (LOU GEHRIG'S DISEASE)

Making decisions about end-of-life care is difficult for patients stricken with ALS. Let Alliance Hospice help you and your loved ones determine when the time is right to ask about hospice care for a patient with ALS/Lou Gehrig’s Disease.

ALS is one of several chronic degenerative conditions. Other conditions include Parkinson’s, Muscular Dystrophy, Myasthenia Gravis or Multiple Sclerosis.

The ever-changing dynamic of emotions and feelings of uncertainty, as well as the complexity of treatment and care options, makes it challenging to choose the best course of action for you and your family. The good news is that quality hospice care and palliative care services are widely available for ALS patients and offer comprehensive pain and symptom management along with end-of-life care that ALS patients and their families need.

If you are reading the information on this web page, chances are you, or someone you love, is facing a difficult physical and emotional battle against ALS. Your search for answers to important questions about care and support for your loved one becomes even more difficult when you face decisions about nutrition, hydration, feeding tubes or breathing machines. Alliance Hospice recognizes the emotional toll and immense courage it takes to help a loved one who is suffering from a terminal illness like ALS. Call 1-706-447-2461 to see if hospice care is an appropriate option.

When is it time to discuss hospice care for a patient with ALS?

It can be difficult to determine when an ALS patient should be considered for hospice care. This is due to the slow decline of a patient with ALS over months and years. On average a hospice patient is thought to have six months or less to live. An ALS patient would benefit from hospice care when the decision for the patient to stop using feeding tubes or breathing machines is made.

Hospice care for als patients

A clinical determination of an ALS patient’s life expectancy can only be made by a doctor. However, the following is a list of ALS end of life symptoms. These symptoms may be a sign that the ALS case has progressed and that the patient and their loved ones would both benefit from the services offered by hospice care.

  • Patient no longer has the ability to move freely – they are either wheelchair or bed ridden.
  • Speech has become extremely difficult or barely intelligible.
  • Patient does not want to be dependent on feeding tubes for nutrition and hydration.
  • The patient does not want to be placed on a ventilator for breathing or wishes to discontinue medical support.

Physicians look for trouble breathing at rest, requiring oxygen at rest, and a result of <30% in a breathing test called vital capacity. Other signs that it might be time for hospice is a rapid progression of the disease from: independent ambulation to wheelchair or bed-bound; normal to barely intelligible speech; normal to puree diet; going from independence in caring for themselves with Activities of Daily Living (ADLs) to needing major assistance. Another sign is nutrition problems in the last 12 months, as seen by an inability to eat and drink, continued weight loss, dehydration and the decision not to use artificial nutrition. Sometimes being at the last stage of illness is recognized by recognizing life threatening complications occurring in the last year. These conditions may include aspiration pneumonia, kidney infection, blood infections, reoccurring fever or Stage 3 or 4 pressure wounds.

The patient’s primary physician or neurologist may recommend hospice care when the time is appropriate. Oftentimes, patients and their families may have to be their own advocates to initiate the hospice care they desire. The patient, their family, or the patient’s doctor may request an evaluation and consultation with Alliance to determine if hospice is an appropriate option.

Benefits of Alliance Hospice Care for ALS Patients

The Alliance hospice team will evaluate the patient’s medical status and revise their care plan as the patient’s condition and symptoms change. The goal of hospice care is to treat pain and other symptoms and relieve the physical and emotional stress to ensure the greatest level of comfort for our patients and their families.

Alliance offers comprehensive hospice care services for patients with ALS:

  • Pain Management – Patients with ALS often experience pain caused by muscle weakness, immobility, joint stenosis and muscle spasms. Our Hospice Care team provides palliative care which focuses on relieving pain and maintaining comfort.
  • Symptom Control – ALS patient often experience difficulty breathing, difficulty swallowing, problems eating and drinking, difficulty communicating, pressure ulcers, dementia, anxiety and depression. Our Hospice Care team regularly assesses each patient’s condition and works with the physician to determine the most effective treatment and medication options to maximize symptom control.
  • Hospice Care at Home – Wherever Home May Be – The goal of hospice care is to support patients by meeting their needs and managing their care at home – wherever they may call home. This means hospice services are provided in a patient’s home, whether that is their primary residence, a nursing home, or home of a loved one. Allowing one to stay at their home gives them the ultimate comfort when addressing terminal illnesses.
  • Coordinated Care Approach – Hospice care is a team effort. The patient’s family and loved ones are actively involved along with a team of professionals and volunteers. With the help and support of the hospice care team, the patient and their family can attain physical, emotional, and spiritual preparation for the end of life.
  • Holistic Approach – Emotional and Spiritual Support – Therapy and counseling services add an additional level of care to the hospice services provided by Alliance Hospice. Therapy and counseling are non-invasive, holistic practices which enhance the medical, social and spiritual care of the hospice team. These practices promote comfort and wholeness for both patients and their families. Therapy and counseling sessions are provided by staff and volunteers of the Alliance hospice team.

Alliance Hospice operates hospice care and palliative care programs in Augusta, Georgia and the surrounding Communities in Columbia, Richmond, Burke, Lincoln, Wilkes, McDuffie, Warren, Hancock, Glascock and Jefferson Counties. We are one of the nation’s premier providers of end-of-life care. Click here to Request Information or call 1-706-447-2461 to learn how hospice care can help.