ALS Hospice Care Explained

Amyotrophic Lateral Sclerosis (ALS) is a serious, neurodegenerative disease. As human beings, we rely on millions of neurons to send messages between the brain and the rest of the body. When these neurons are damaged and destroyed, those messages can’t get through. This is a simple way of explaining how ALS works and detrimentally affects the body of the individual diagnosed with it.

The disease can typically start in a localized area of the body. The individual may have difficulty with fine motor movement, such as finding a task as simple as unscrewing a bottle top hard to perform. This gradually progresses as more neurons become damaged and the effects spread throughout the body.

The prognosis for ALS is poor. It can ultimately leads to severe paralysis as more and more neurons are destroyed. It affects the individual’s ability to swallow and speak and, in the later stages, nerve damage can remove the ability to breath without assistance.

According to statistics, 50% of those diagnosed with ALS will die within 3 years of developing the disease. Only 10% will live beyond the ten-year mark.

Caring for someone with ALS can be extremely challenging. Some initially do this at home but, as the condition worsens, other options such as hospice care will need to be considered.

What is Hospice Care?

Hospices are facilities that focus on palliative care for those with terminal or chronic illnesses. The goal is to provide a comfortable environment, including relief from the more challenging symptoms in the latter part of the disease.

A hospice is there to provide a team approach which is also important for those who may have been caring for the individual at home but now find that their loved one needs more help. That hospice team may consist of nurses, doctors, volunteer helpers and social workers, to name just a few.

Advantages of Hospice Care

Hospices are used primarily for end-stage ALS care. If the disease follows it’s normal progression, this is usually the last six months of life and is a time when the individual will need more than just support in the home and may require significant medical assistance and pain relief.

The key advantages are:

• The hospice is able to provide interdisciplinary care for the individual as they approach the end of their life.
• That care is available 24/7 for the person with ALS and financial help can be provided from Medicare for expenses such as medication and medical equipment.
• Staying at home can mean unwanted trips to the hospital or visits to physicians. When someone is sure that hospice care is the right decision for them, they benefit from being in one place and being looked after properly.
• Most see it as a way to maintain dignity at the end of life, especially with a condition such as ALS where individuals at the end of life are often paralyzed and have little ability to communicate properly.
• It can also remove pressure from the family and friend of the individual who may find it difficult to provide sufficient help.

Potential Disadvantages of Hospice Care

If someone is funding their hospice care through Medicare it normally works by providing a daily allowance for all the medical care that might be undertaken. This may mean, under exceptional circumstances, that certain tests, medications and the like are not carried out because there is a limited budget.

There are also restrictions under Medicare on whether a person can be admitted to hospital if needed. Individuals with ALS may also be unable to take part in experimental trials and treatments without risking their insurance cover.

Choosing a Hospice and Paying for Hospice Care

Finding a hospice which is experienced in dealing with ALS patients may be a challenge. By the time it is needed, the individual with ALS may be paralyzed and unable to communicate.

It pays, therefore, to make a decision on hospice choice before the condition gets bad enough that the individual has no control or say over the decision making process.

According to alsa.org, choosing the right time may depend on:

• A person experiencing a sudden decline of their symptoms.
• Breathing is very much impaired and an individual doesn’t want to be put on a ventilator machine.
• The individual is unable to keep their nutrition maintained.

Finding a hospice in the local area is going to be important, especially for friends and families to visit and maintain contact. There are two organizations in the USA that provide information on nearby hospices. They are:

• National Hospice and Palliative Care Organization (NHPCO)
• National Association for Home Care & Hospice (NAHC)

Funding palliative care should be covered by private insurance, Medicare and Medicaid and the Veterans Health Administration. There are also various memorial funds and grants that may be in place in the local area which can be accessed if needed.

Difficult Decisions

No one wants to think of their final days but preparing hospice care is an important part of dealing with a degenerative disease such as ALS. Discussing these decisions when the individual is able to do so will not only give peace of mind but will also lift a huge weight off the shoulders of family and friends who currently provide care.