Hospice. The word alone makes us uncomfortable. It prompts thoughts of death, the loss of loved ones, and our own mortality. But when we reach those points, hospice is the guide we turn to.
Hospice is a special service for people with a life-limiting illness. Compassionate providers administer care in a personal home, nursing home, assisted living community, hospital, or dedicated hospice center.
The goal is to offer comfort and support by managing pain and anxiety with aides such as music and pet therapy, medical equipment, and spiritual and emotional counseling. Hospice providers work in coordination with the patient’s physician during scheduled visits. However, they will respond 24 hours a day, seven days a week as need arises.
Patients are required to be diagnosed with a terminal illness, be at least 65 years of age, and have a doctor and a hospice medical director certify that the patient appears to have a life-expectancy of six months or less, although care can be extended longer. Alzheimer’s disease is considered a fatal illness because there is no cure. Hospice care typically is called in when a person with dementia has a medical complication such as aspiration pneumonia (a lung infection due to a large amount of material from the stomach or mouth entering the lungs), other infection, or significant weight loss.
The word “hospice” derives from the Latin word, hospes, which means both guest and host. It’s believed to have developed in Europe by the 11th century when Roman Catholic religious communities provided places of hospitality for the sick, wounded, or dying as well as travelers and pilgrims. The first guests/patients may have been Crusaders.
In more recent history, Madame Jeanne Garnier founded the Dames de Calaire in Lyon, France in 1842 specifically for patients nearing death. Then in 1948, Dame Cicely Saunders, a British nurse who later became a physician, worked with the terminally ill patients at St Joseph’s Hospice in East London. She is recognized as founding the first modern hospice, St Christopher’s Hospice, in 1967.
In 1969, Dr. Elisabeth Kubler-Ross published her book, On Death and Dying, which highlighted more than 500 interviews with dying patients, patient rights in choosing their end-of-life care, and dying with dignity.
The first hospice in the U.S., Connecticut Hospice in Branford, CT was founded in 1974. Legislation was introduced to provide federal funds for hospice programs, but it didn’t pass into law until 1982. In 1986, Medicare Hospice Benefit was enacted, and states were given the option to include hospice in their Medicaid programs. Currently, most hospice care in the US is covered by the Medicare Hospice Benefit.
(For more information on Alzheimer’s disease, see my Facebook page Navigating Alzheimer’s. My book, Navigating Alzheimer’s. 12 Truths about Caring for Your Loved One, is available from Amazon.com, ACTA Publications, and my website.
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Great information, Mary. I believe hospice is as much for the family as for the individual – we received such wonderful care when my mom, and both my in-laws were on hospice. Amazing, compassionate caregivers for all of us. And they followed up for 13 months after.
My mom’s Alzheimer’s kept her moving probably 18 hours of every day – walking, moving around. She even stood while she ate. But when the hospice music therapist visited, Mom would actually sit still in a chair for 30 minutes humming along with the hymns and just enjoying the music. It was quite amazing!
Thanks for sharing this!
Thank you for commenting, Stacy, and your excellent input. I recently saw a hospice therapist with a young man with Alzheimer’s and the therapist was playing Ozzie Osborne’s “Crazy Train.” I’d never seen this man smile like he did with her. He was having so much fun. It made me realize that some people do prefer rock music over harp and guitar. 🙂