Hospice care is an important option for families to consider when a loved one has been given a diagnosis of six months or less to live. But whether hospice or palliative care is the right choice for your family can depend on emotional, practical, and financial factors.
“Generally with hospice care, you stop aggressive therapies and change the focus to quality of care and comfort,” said Jon Radulovic, vice president of communications with the nonprofit National Hospice and Palliative Care Organization (NHPCO), in an interview.
For some people, the prospect of moving a family member into hospice care can represent a sense of giving up, but that’s not the way it’s seen by the thousands of doctors, nurses, home health aides, volunteers and spiritual advisors who make up hospice and palliative care teams around the country.
Rather, it’s a shift from curative treatment to a different kind of treatment — one that focuses on managing pain, controlling symptoms, and providing quality of life in a person’s last days, said Lisa Veglahn, vice president of the nonprofit Hospice Foundation of America (HFA), in an interview.
“People are often asked to consider hospice care by a doctor after being told that there is nothing else than can be done, but we think of it as the next thing that can be done,” Veglahn said.
According to the NHPCO, roughly 1.4 million Medicare beneficiaries received hospice services in 2015, the most recent year with complete research. Of that group, roughly 95 percent were age 65 or older and 65 percent were 85 or older.
Hospice started in the early 1970s as a service mostly intended for cancer patients, but today cancer patients make up only 36.6 percent of hospice admissions, according to NHPCO figures. Dementia — including Alzheimer’s patients — and heart disease patients make up the next biggest groups, at just fewer than 15 percent each. Lung disease patients are next at 9.3 percent; stroke or coma patients represent 6.4 percent. Other hospice patients are affected by kidney or liver disease, HIV/AIDS, and other motor neuron—related illnesses.1
Where hospice care happens and what it entails
Hospice care can take place in a hospice care center or at an acute care hospital, but the majority takes place in a patient’s home — whether that’s a private residence, a nursing home, or an assisted-living facility.
Most often, home hospice care involves family members, volunteers, social workers, and home health aides handling much of the pain medication and emotional and physical comfort of the patient, while a hospice doctor and other hospice staff make visits and are available to be called 24 hours a day, seven days a week. Patients often make their primary care doctor or the specialist who had been treating them part of the team. In some cases, additional nurses or caregivers are hired by the family outside of what hospice provides. Bereavement counseling and grief therapy are also typically provided.
Most hospice agencies have been certified to provide services under the 1982 Medicare hospice benefit. Medicare, Medicaid, and most private health insurance plans will cover the majority of expenses for patients who qualify; typically it's for those who have been given six months or less to live,but that six months of care can be extended, if necessary. The care can also be interrupted if a patient should suddenly get into a clinical study or want to try an experimental treatment, said the HFA’s Veglahn. However, most patients are in hospice care for a week or less, according to NHPCO.
In order to qualify for hospice care under Medicare, the hospice doctor and the doctor who had been treating the patient (if the patient had been receiving active care) have to certify that the person is terminally ill with a life expectancy of six months or less. Medicare generally covers the medical treatment, hospice staff, pain medication, any equipment or supplies, short-term assisted-living care and grief counseling, among other benefits. But it doesn’t pay room and board if your family member is living in a nursing home, for example. (For more on what Medicare covers, click here.)
Although you need a doctor to sign off officially before qualifying for hospice care, experts recommend families considering the service start researching ahead of time, so as to have as much information as possible when they need to make a decision. Terms for private health insurance coverage vary, so it is important to check coverage with individual providers as well.
What’s the best way to find a provider? Medicare, NHPCO, the HFA, and other organizations all provide directories that enable searching by state, type of care, religious or spiritual affiliation, or type of illness. (Check out the HFA’s Hospice Directory here).
But word-of-mouth can be important as well, said the HFA’s Veglahn. Since every hospice is run independently, they all function a little differently. It’s important to ask your doctor or other families in the community you may know who have used of hospice services in the past. It can be helpful to find a service that has offices nearby, particularly if you are having hospice in your home. Talk to the staffs of different local centers and see who feels like a good fit for your family.
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1 National Hospice and Palliative Care Organization, "Facts and Figures: Hospice Care in America: 2016 Edition," 2015.