Conditions

HOSPICE CARE FOR ALS (LOU GEHRIG'S DISEASE)

Hospice Care and Support Services for Patients Suffering from Lou Gehrig’s Disease (ALS)

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

Hospice is a medical service based on a holistic approach to providing quality end-of-life care to patients. Heart of Hope Hospice has an inter-professional team-focus led by a physician medical director. Heart of Hope Hospice physicians manage and monitor care during the length of service and have extensive experience in the hospice/palliative modality of care.

Research has shown that hospice does improve the quality of life in patients, and that patients in hospice care live comfortably up to 2.5 months longer, on average, compared to patients that opt not to be under hospice care.

Thinking about and trying to make decisions about end-of-life care can be difficult for families and patients with any type of neurological disease, such as ALS. We at Heart of Hope Hospice can  help you and your loved ones navigate important questions in determining  when the time is right to have a greater understanding about hospice care for a patient with ALS disease.

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Hospice Care for Advanced ALS Patients

Under Medicare regulations, in order to admit a patient under our care, the patient has shown a decline in clinical status. These changes in clinical vHeart of Hopebles apply to patients whose decline is not considered to be reversible. They are examples of findings that generally connote a poor prognosis. However, some are clearly more predictive of a poor prognosis than others; significant ongoing weight loss is a strong predictor, while decreased functional status is less so.

The following are examples of clinical decline that will indicate the patient with ALS can be considered for hospice care:

• Recurrent or intractable serious infections such as pneumonia, sepsis or pyelonephritis;
• Weight loss of at least 10% body weight in the prior six months, not due to reversible causes such as depression or use of diuretics;
• Decreasing anthropomorphic measurements (mid-arm circumference, abdominal girth), not due to reversible causes such as depression or use of diuretics;
• Observation of ill-fitting clothes, decrease in skin turgor, increasing skin folds or other observation of weight loss in a patient without documented weight;
• Difficulty swallowing leading to recurrent aspiration and/or inadequate oral intake documented by decreasing food portion consumption.

A patient with ALS often needs assistance to walk, stand, and move. People in this stage experience severe and debilitating symptoms. Motor symptoms, such as rigidity and bradykinesia (slowness of movement), are visible and difficult to overcome. Most people in this stage aren’t able to live alone. They need the assistance of a 24-hour caregiver and hospice care, as patients are unable to perform normal tasks. The patient no longer has the ability to move freely – they are either wheelchair or bed ridden, speech has become extremely difficult or barely intelligible and the patient does not want to be dependent on feeding tubes for nutrition and hydration.

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

An Heart of Hope Hospice Medical Director is always available to review the patient’s clinical history in coordination with the patient’s primary care physician. Final determination on a decision based on the patient’s clinical history rests on the MD in coordination with the patient or patient’s decision maker.

If your loved one has these symptoms, you may want to contact Heart of Hope Hospice as they may be a sign that the ALS has progressed and that he/she would benefit from the services offered by Heart of Hope Hospice:

• 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.
• The patient is requiring oxygen at rest as a result of <30% in a vital capacity breathing test.
• The patient is now wheelchair or bed-bound
• The patient has normal to barely intelligible speech
• Needing major assistance in activities of daily living, or ADL’s
• The patient has continued weight loss, dehydration, and difficulty with eating or drinking

Benefits of Heart of Hope Hospice Care for ALS Patients

Pain Management – Patients with ALS often experience pain caused by the progression of the disease in the form of muscle weakness, immobility, joint stenosis and muscle spasms. Our  Heart of Hope Hospice Team provides comfort care which focuses on relieving pain and maintaining comfort.

Symptom Control – Heart of Hope 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 for symptoms which may include: difficulty breathing, difficulty swallowing, problems eating and drinking, difficulty communicating, pressure ulcers, dementia, anxiety and depression.

Hospice Care at Home –  The goal of hospice care is to support patients by meeting their needs and managing their care at home – wherever they may call home, using a holistic approach that includes hospice massages and emotional and spiritual approaches.

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 preparedness for the end of life.

The Heart of Hope Hospice Team continuously evaluates the patient’s medical status and revises the 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.

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Holistic Approach – Emotional and Spiritual Support – Therapy and counseling services add an additional level of care to the hospice services provided by Heart of Hope 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 Heart of Hope Hospice team.

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