Historians believe that the first hospices originated in Malta around 1065, dedicated to caring for the ill and dying enroute to and from the Holy Land. The term “hospice” referred to places of shelter for travelers, particularly in medieval Europe. The moder hospice movement began to gain momentum in the 1960’s with Dame Cicely Saunders’s establishment of St. Christopher’s Hospice in London, which emphasized comfort and quality of life for patients and their families.
This idea of specialized care for the dying was first introduced to the United States during a lecture at Yale University in 1963. In the early 1970’s the first national hearings on the subject of death with dignity were conducted by the U.S. Senate Special Committee on Aging.
In 1978, the National Hospice Organization was established and the U.S. Department of Health, Education, and Welfare task force reports that “the hospice movement … is a viable concept and one which holds out a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs. As such, it is the proper subject of federal support.”
In 1979, The Health Care Financing Administration (HCFA) initiated demonstration programs at 26 hospices in 16 states to assess the cost effectiveness of hospice care and to help determine what a hospice is and what it should provide. The same year the NHO issues the first “Standards of a Hospice Program of Care,” adopted by the NHO Board of Directors in February.
In 1982 Congress includes a provision to create a Medicare hospice benefit. In 1996 the National Hospice Organization publishes Medical Guidelines for Determining Prognosis in Selected Non-Cancer diagnosis.
As we are approaching 30 years since the non-cancer diagnosis guidelines were published, I continue to be astonished by the ongoing misconceptions about hospice services in the lay and medical provider communities alike. I continue to hear statements like “My patient is still awake and eating and drinking so it is not time for hospice” and “I don’t have cancer so why should I be considered hospice services.”
These statements pain me because they underscore the reality that hospice services are underutilized and folks are not receiving the support and care that they deserve. Some statements I have heard from folks that elect hospice services include “Doc, I have not felt this good in years” and “I cannot remember when Mom looked this comfortable.” Improving quality of life when quantity is limited is what it is all about.
Today, hospice care is offered in a variety of settings, including inpatient facilities, nursing homes, assisted living facilities and patients’ homes. Hospices provide a range of services, including medical, emotional, and spiritual support. Medicare defines eligibility for hospice as someone with a life expectancy is six months or less if the terminal illness runs its normal course. This life-limiting illness may be a cancer diagnosis, but it is often a misconception that it must be a cancer diagnosis. Hospice services provide care and support to those facing life limiting cardiac (Congestive Heart Failure, Coronary Artery Disease), pulmonary (Chronic Obstructive Pulmonary Disease, pulmonary fibrosis), neurologic (strokes, dementia), kidney, liver, genetic, and advanced age-related illnesses to name a few examples.
Hospice is a powerful benefit that we all deserve and are entitled to.
If you or someone you know may benefit from learning more about this invaluable resource please contact Hospice of the Panhandle at (304) 264-0406 or visit our website at www.hospiceotp.org
Dr. Sarah Phillips has been the medical director for Hospice of the Panhandle since 2013. She holds a certification in geriatric medicine and family medicine.