While we search for a cure, we want all people with ALS to be able to live out their lives to the fullest. That includes getting the care and support they need to be comfortable and face death with dignity.
Hospice and palliative care can help you do exactly that. They focus on providing compassionate, family-centered care to people with serious or terminal illnesses.
Palliative care is any care designed to relieve pain, reduce suffering, and improve the patient’s quality of life. That definition also describes hospice care; in fact, hospice is a type of palliative care. The difference between the two terms is that hospice is focused on helping the patient during the last six months of life, with no further attempts to cure the illness or prolong life. Palliative care can happen at any time over the course of the disease, and it may or may not include efforts to try to cure the patient or prolong life.
Both hospice and palliative care involve a team of people working together to meet the patient’s needs. The team often includes family members, the patient’s primary physician, nurses, home health aides, social workers, therapists, trained volunteers, and clergy or other counselors. A specialist in hospice or palliative care oversees the team and coordinates efforts. Care is usually provided at the patient’s home, though it can also be provided in the hospital, at a nursing home, at an assisted living facility, or at freestanding hospice centers.
The team provides a number of services, such as:
Managing the patient’s pain and symptoms.
Providing needed drugs, medical supplies, and equipment.
Coaching the family on how to care for the patient.
Providing short-term inpatient care if symptoms become too severe to manage at home, or if the caregiver needs respite time.
Providing emotional and spiritual counseling to the patient, and bereavement care to surviving family and friends.