Hospice Myths and Realities Explained
When former president Jimmy Carter entered hospice care in February 2023 — and lived nearly two more years — he brought the concept a new burst of publicity. But the myth that hospice care is a last-ditch effort is only one misconception about hospice, whose modern origins date to 1967, when Cicely Saunders opened St. Christopher's Hospice in London for palliative care of terminally ill patients.
Hospice is for families as well as patients. | Credit: Getty
Common Confusions
"So many people still don't know what hospice is all about," says Jason Cooper, national spiritual lead of Vitas Healthcare, which runs 58 hospice programs nationwide.
"Patients, relatives, caregivers, visitors — surprisingly few people understand, and we're constantly answering those questions," says Nathaniel Chappelle, M.D., medical director of nonprofit Pathways Hospice based in Fort Collins, Colorado.
Cooper and Chappelle clear up some of the most common confusions.
Myth: Hospice is a single place.
Reality: One precept of hospice is to meet patients where they are, which is most likely at home, where they're most comfortable. For some, that means an assisted living situation or nursing facility. Occasionally, says Chappelle, a patient is living in a shelter or "couch-surfing with a relative." There are stand-alone hospice facilities, "like a hospice hospital," but they are a small minority.
Special Services
Myth: Hospice is for the last week or so of life.
Reality: A lot of people believe this. At Pathways, Chappelle says, "half the people we serve are with us less than two weeks." But "the sooner we know a patient's prognosis is not going to improve," Cooper says, "the sooner we can provide comfort care and services for the patient, and support for the family and caregivers."
By law, Medicare Part A pays for hospice benefits if you are declared to have a maximum of six months to live, accept palliative care and sign a statement choosing hospice over other Medicare-covered treatments for the terminal illness and related conditions. Medicaid also plays a role in hospice.
"With us, bereavement and grief support begin at admission."
As hospice advocates often say, why not use the maximum benefits you can?
Myth: Hospice covers only pain drugs.
Reality: This myth probably comes from entertainment media, where morphine figures prominently, Cooper says. But the more nuanced goal is comfort and allowing patients the autonomy to choose for themselves. Some try to avoid being medicated, he says.
As for benefits, hospice covers anything related to the primary diagnosis, Chappelle says. For congestive heart failure, for example, that might include heart medications and common drugs for blood pressure, breathing, nausea and regularity — plus supplies such as oxygen and its equipment, a hospital bed and other durable medical equipment.
Other benefits include family counseling, personal care support, help with bureaucratic and legal details, experts by phone and so on. "With us, bereavement and grief support begin at admission," Cooper says.
Holistic Help
Myth: Hospice exists to help the person who's dying.
Reality: That's generally true of hospitals, our experts say. In hospice, there's so much more. Caregiver respite is a general benefit from Medicare/Medicaid; other insurance payors (such as the Department of Veterans Affairs and commercial insurance) vary in what they offer, Chappelle says. "Here in Florida, social workers know the Medicare and Medicaid requirements and can help navigate for the caregiver," Cooper says.
For multigenerational families, hospice may also be able to help a grandchild in the home navigate grief and loss with the aid of a social worker, chaplain, home health worker or even child life specialist, he adds.
One of hospice's best-known programs is bereavement support, which Chappelle says may extend to anticipatory grief counseling. Other emotional support that may be available for families and caregivers includes working through complex feelings when the relationship with the patient is difficult.
Hospice staff are also trained to recommend resources in the community, whether for in-depth counseling or for meals, outside caregiving or a nursing facility.
Myth: When the chaplain shows up, you're at death's door.
Reality: She or he may just want to say hello. When Cooper or a colleague drops by to see a patient, it's probably to open a dialogue: "'How are things going? How's your family doing?' We just want to hear your story and learn what's stressing you, what your struggles and anxieties are." An initial visit often leads to ongoing, interesting conversations, he says.
Myth: Hospice is gloomy and depressing.
"It's intense, but if it were all gloom, no one could do the work."
Reality: Coming from church and youth ministry, this was one of Cooper's concerns as well. Sadness attends dying, of course, but "there is also joy and beauty in caregiving," as Chappelle says. "It's intense, but if it were all gloom, no one could do the work."
Staff see families reunited, patients relaxed and friendships renewed. There are even funny stories, like the 104-year-old discharged twice who went home and cooked for her family. Patients, released by a short-term diagnosis to take the long view, often joke about the process and "may feel no need to hold back anymore," Chappelle says — sometimes surprising those around them while leading the laughter.
Myth: Hospice provides 24/7 care.
Reality: In a hospital or a dedicated hospice facility, this is pretty much true but not so at home or a homelike setting. However, Cooper says, at home, nurses, physicians, social workers, volunteers, chaplains, home health workers and volunteers visit. With hospice, patients have a skilled and dedicated team working in conjunction with their own family and other caregivers. As Chappelle points out, "this can really help speed up the communication and integration between the medical side and the caregiving side and help things go more smoothly."
Myth: I don't need a chaplain because either I don't have a belief system or I already have a minister, rabbi, etc.
"Just as physicians and nurses provide physical care to patients, so chaplains and social workers provide mental, spiritual and emotional care for the patient and the family."
Reality: Cooper gets this a lot. "Honest, we're not trying to convert you or force prayer on anyone," he says. Chaplains respect people's autonomy and values, he says. "We can act as a liaison if you'd like us to connect you to a faith leader or other resources in the community."
A chaplain's role in health care is so much more than finding a religious connection or ritual, our experts agree. "Just as physicians and nurses provide physical care to patients, so chaplains and social workers provide mental, spiritual and emotional care for the patient and the family," Cooper explains. "We're trained to listen actively for pinch points — maybe guilt, shame, sorrow, a need for reconciliation with others or with yourself." Over time, both Cooper and Chappelle note, hospice patients frequently surprise themselves at how much they have to say.
Myth: You need to look like you're dying right now to access hospice care.
Reality: Says Chappelle, "We'd like for people to think of hospice as a supportive care network for living with a terminal illness, not for dying."
Part of the hospice philosophy is that life is finite, he explains. The main illness may be shortening your life, but it doesn't have to make you miserable. For example, lots of people continue to treat bacterial infections — pneumonia, urinary tract infections — that can be kept at bay.
"If I ever face a terminal diagnosis," says Cooper, getting thoughtful, "I would choose hospice because of the nature of the support and the holistic approach I've seen firsthand and advocated for at a management level." Before moving into this field, he says, "I never realized the power and impact a hospice team could make."
