“It is common for people to hear the word ‘hospice’ and have some preconceived notions about what it is,” says Leslie Schaeffer, a Licensed Clinical Social Worker and Outreach Coordinator, Bethesda Hospice Care. “Sometimes they are too frightened to even look into it.”
Unfortunately, misunderstanding and fear mean hospice services are, in many cases, underutilized, causing patients and loved ones to miss its many benefits.
According to Leslie, hospice is about improving or maintaining the highest quality of life through emotional, spiritual and medical support during the final phase of life. Families who have experienced hospice care with a loved one are more satisfied with the care that was provided.
Below, Leslie takes a look at some of the more common myths about hospice care.
Myth 1: Hospice Care is only available during the last few days of life.
Fact: Hospice care is available at any point a physician certifies that a person with a life-limiting illness has a life expectancy of six months or less. “Sometimes people live longer, due to the care and support they receive in hospice,” Leslie says. According to the National Hospice and Palliative Care Organization (NHPCO), hospice patients live an average of 29 days longer in hospice than in alternative forms of end-of-life care.
Myth 2: Accepting a referral to hospice care means the patient has given up.
Fact: Hospice is not about waiting to die. It is about making the most of the life the hospice patient has left. “It means the patient has chosen to focus on the quality of their life,” says Leslie. “The goal is to reduce pain, create emotional wellbeing and spiritual peace.”
The shift is from curative treatments that are no longer effective to medications that provide comfort. Hospice also allows time for the family to come together, share memories, forgive differences and celebrate the life of the hospice patient.
Myth 3: Hospice care is expensive.
Fact: Medicare and Medicaid provide coverage for hospice services. In 2014, the NHPCO stated that the Medicare payment benefit for hospice fully covered 86 percent of all hospice patients.
Myth 4: Hospice means I have to leave my home.
Fact: Hospice services can be provided in the home, the home of a friend or relative, a hospital, or a senior living home. “Wherever the patient calls home, we deliver care,” says Leslie. In 59 percent of cases, hospice patients receive hospice services in their own home.
Myth 5: Hospice services only provide care for hospice patients.
Fact: Hospice services provide care and support for the family as well. Bethesda Hospice Care offers respite care, bringing volunteers to the home to relieve caregivers who need to attend to their own lives or simply leave for a time of rest and recovery.
End-of-life education is available to help caregivers understand the stages and signs of a life that is ending. Hospice can also help with difficult family issues and misunderstandings, and open communications between loved ones and hospice patients.
Also, Bethesda Hospice Care offers caregiver support groups at four of its locations across the St. Louis area.
Finally, grief counseling and support through Bethesda Hospice Care’s Bereavement Program is available for 13 months after the hospice patient has passed. The support can be extended for additional time if needed.
Myth 6: As a family member, shouldn’t it be my responsibility to advocate everything medically possible for a cure?
Fact: The desire to always pursue curative treatment for a loved one is understandable. However, at some point, doing ‘everything that can be done’ to treat an illness will only extend the patient’s suffering, reduce their quality of life, and prevent them from sharing their final days in the maximum amount of peace and comfort available.
Myth 7: Becoming a hospice patient means the patient loses all control.
Fact: “The expressed needs and wishes of hospice patients are our top priority,” says Leslie. “We constantly address their concerns during the time they are in our care, and make adjustments to meet their changing needs.”
For example, some patients with few or no family members nearby fear dying alone. Bethesda Hospice Care provides a “No One Dies Alone” service, coordinating volunteers to be with the patient at all times.
Patients may fear pain. Though pain may be part of the process, hospice professionals are trained, skilled, and experienced in providing a unique service that is attuned to each hospice patient’s needs, including pain management.
Challenging the Myths About Hospice Care
“Working in hospice is much more than a job,” says Leslie. “It’s about making a positive difference in the lives of patients and families at one of the most difficult times in their lives.”
To learn more about how Bethesda’s Hospice Care can help your loved one maintain quality of life at home or in a designated Bethesda facility, please contact us.