People cannot avoid death, but they often avoid talking about it. That’s why many people don’t receive as much — or any — hospice care they qualify for, experts say.
“There’s a real taboo in society that hospice equals death,” said Alisa Gerke, the board chair of Wisconsin Hospice and Palliative Care Collaborative and executive director at Unity Hospice and Palliative Care, a nonprofit provider that serves 14 northeast Wisconsin counties.
The goal of hospice isn’t to speed up the dying process; it’s to make people more comfortable — treating the symptoms of an illness instead of trying to cure it.
Once families enroll in hospice, Gerke said, they often ask: “How come nobody told us about this sooner?”
When to talk about hospice
Don’t wait for your provider to bring up hospice.
Patients and providers often wait for the other person to bring hospice up, said Angela Novas, an advanced certified hospice and palliative care nurse and consultant at the nonprofit Hospice Foundation of America. Let providers know that’s something you might be interested in.
Patients or their loved ones can also reach out to hospice providers directly and ask for an eligibility assessment, Novas said.
The basic requirements for adults to receive hospice care under Medicare include:
- Verification from two physicians that a patient has a life expectancy of six months or less.
- A patient’s willingness to pursue treatments to provide comfort instead of treatments aimed at extending life expectancy.
Clearing up misunderstandings about hospice
Some people may have misperceptions about hospice. Here is what it is not:
- A place. Instead, it’s a model of care, Gerke said. While some providers may run facilities, hospice care can be provided at home and in nursing homes, assisted living facilities, hospitals and other settings.
- Constant nursing care. Hospice is meant to supplement care from family or facility caregivers, Novas said. But providers should be readily accessible for questions and concerns.
- Stopped if someone lives longer than six months. Instead, providers work to re-certify that someone is still likely to die within the next six months, Gerke said. Patients are no longer eligible for hospice if their life expectancy unexpectedly improves.
- Permanent. Patients can decide to stop hospice and try curative treatment. If their outlook doesn’t improve, they can return to hospice, Gerke said. They can also freely switch providers.
So what’s palliative care?
Palliative care is a philosophy and medical speciality focused on alleviating suffering, according to Dr. Sara Johnson, a palliative care physician and University of Wisconsin School of Medicine and Public Health professor.
Hospice is a form of palliative care for people at the end of life. But people with a serious illness can access palliative care earlier in their diagnosis and while receiving curative treatments.
Palliative care services are becoming more accessible, Johnson said.
Palliative care specialists add a layer of support for patients and their families, Johnson said.
There is no harm in asking a provider about palliative care options, Johnson said. “If you’re thinking about it, just ask.”
How to find the right provider
Ask local providers for hospice care recommendations, Novas said. But don’t be afraid to shop around. Experts recommend asking these questions before choosing a provider:
- How long have you served this area, and where are your staff located?
“Having staff that know that community, live in that community, are a part of that community is huge,” Gerke said.
- What is your response time?
A patient’s condition can quickly change, making it important to know how quickly staff will answer calls or arrive in those cases.
- What is your relationship with nearby providers?
If you know you want to use a particular nursing home, hospital or physician, it helps to know whether hospice providers have relationships and contracts with them.
- What grief support do you offer?
Medicare requires hospice companies to provide families with bereavement services. But the level of those services can range widely.
- What is your Medicare rating?
Medicare.gov offers a hospice look-up tool with quality care ratings. The federal agency provides comparative ratings based on family surveys and metrics like nursing visits in patients’ last days before death.
- Are you for-profit or nonprofit?
Private equity and publicly traded companies are increasingly taking hold of the hospice industry. Those providers have been associated with lower quality of care, according to a Cornell University study.
For-profits face expectations around financial performance and typically have obligations to shareholders, Gerke said.
But a nonprofit status does not guarantee better care, Novas said. People should prioritize whether a provider fits their specific needs.
- What services do your volunteers provide?
Medicare requires hospice providers to have a volunteer program. Do volunteers play games with patients? Provide pet therapy? Read to people? Some volunteer programs are more robust than others, Novas said.
- What medications do you not cover?
Not all medications and supplies are covered under the Medicare hospice benefit, Novas said. It’s important to know what you might have to pay for out-of-pocket or with other health coverage.
More resources on what to ask providers and know about hospice can be found through the Hospice Foundation of America’s website.
