(Editor’s note: November is National Hospice and Palliative Care Month. This is the first article of a three-part series that focuses on the differences between community palliative care and hospice, the importance of end-of-life conversations and an effective community palliative care program in West Virginia.)
When many people first hear the terms ‘palliative care’ or ‘hospice,’ they naturally think that the words are interchangeable. Although they’re similar in many respects, the two words aren’t the same.
Palliative Care is specialized medical care for people with serious illnesses that focuses on providing relief from the symptoms and improving quality of life for both the patient and the family outside of the hospital.
“Both palliative care and hospice care provide comfort to the patient and the family,” said Chris Zinn, executive director for the Hospice Council of West Virginia. “Palliative care can begin at the initial diagnosis and be provided at any stage of the illness even while someone is also pursuing a curative treatment.
“Hospice care begins after treatment for cure of the disease is stopped and when it is clear that the person is not going to survive the illness.” Medicare regulations stipulate that the hospice benefit is for patients estimated to be in the last six months of life. Palliative care is offered first for patients who have symptoms from a chronic illness like heart failure or stroke. Hospice is for patients later in their illness.
Cindy Jamison knows firsthand the comfort and benefits both types of care can provide. Her 89-year-old mother-in-law started receiving hospice two years ago, after being in and out of hospitals with a chronic and serious illness.
“She had problems reconnecting and readjusting to home after every hospital discharge,” Jamison said. “Now she has a daily routine and gets to spend her final years living in an environment she recognizes surrounded by family.”
Jamison retired as the program manager of the West Virginia Center for End-of-Life Care in 2016. At the time she knew her mother-in-law’s quality of life was declining, but she thought it was too soon for palliative care or hospice.
“Hospice was a hard family decision because they thought it meant she was near death,” Jamison said. “But you can’t do this by yourself. You need help. The hospice team supports both the patient and family by providing access to variety of specialists. Every six months she is reassessed and qualifies because the quality of her life continues to decline.”
Most people don’t know the difference between hospice and palliative care, or when it is a good time to start, Zinn said. Palliative care and hospice improve the quality of life, helps relieve pain and anxiety and anticipates needs of patients and families.
“It is good for palliative care to start early,” Zinn said. “A person receiving palliative care can also receive hospice when they progress in their illness. The role of both health care teams is to support the patient and entire family and help them be in control as much as possible.”
Jamison’s relationship with someone who has a serious illness and knowledge about community palliative care is similar to many West Virginians. A majority (90%) of residents either have a serious illness themselves or know/knew someone with a serious illness. Just ten percent said they do not know anyone with a serious illness, according to a statewide survey.
Using a grant awarded by the Claude Worthington Benedum Foundation with assistance from the West Virginia University Foundation, the West Virginia Center for End-of-Life Care conducted a statewide survey as part of the community palliative initiative to examine West Virginians’ knowledge of and attitudes regarding palliative care.
The objective of the survey was to gather information on West Virginians’ knowledge of advanced illness care, community palliative care and resources such as how, where and by whom they would prefer to receive such care.
“Results of the survey show that while two-thirds of residents know there are treatment options available for patients with a serious illness, more than three in four are not familiar with community palliative care and the types of services it can offer individuals suffering from advanced illness,” said Dr. Alvin Moss, director of the West Virginia Center for End-of-Life Care. “After residents learn about palliative care and its benefits, 59 percent say they would want it and another third say they might want it. Only eight percent say they definitely would not want it.”
In West Virginia palliative care services can be provided by hospitals, hospices, nursing homes or home health agencies. Ensuring residents of the Mountain State have access to community palliative care and hospice services is even more vital because the West Virginia Center for End-of-Life Care already offers a nationally recognized registry to ensure people’s wishes are respected near the end of life. Community palliative care helps to ensure that patients’ wishes to die at home comfortably are honored.