The American Hospice Foundation, an advocacy group that has worked to improve care for the dying and bereaved since 1995, will close its doors at the end of this month. The foundation has lost too much funding to continue, its founding president and
chief executive Naomi Naierman told me in an interview. As a parting gift, however, Ms. Naierman — a hospice executive for more than 30 years — has passed along some consumer advice.
Even as Americans make greater use of hospice care, families often don’t grasp that in most places they have a choice of programs. And when the time comes to decide, many are in the middle of a health care crisis that makes researching the options difficult.
Ms. Naierman and her colleagues have come up with some key questions to ask when you’re selecting a hospice (a more complete list appears on the foundation’s website). The conversation below has been edited and condensed for space.
In your decades with hospice, what are some of the changes you’ve seen, positive or negative?
The growth of hospice is a positive trend. It’s not only available in most communities, but in most urban areas, you have lots of options.
On the negative side, it started out with volunteers who really wanted to focus on care for the dying and has moved toward a big business, in some cases owned by very large corporations.
For a long time, we could assume that every hospice provided high-quality care. There came a time when that assumption was no longer safe.
So families have to shop around for the best hospice care?
You have to become a very savvy consumer about what is likely to be the most important health care decision you make in your life.
As a foundation, we’ve been advocating publicly available data. We are looking toward a “hospice compare” tool, published by the federal Center for Medicare and Medicaid Services. The Affordable Care Act requires public reporting on hospice care. And fortunately, there’s been a tradition of hospices conducting evaluations by primary caregivers, who are intimately familiar with the care of the patient. But that data is not yet available to the public.
Similar to Medicare’s Nursing Home Compare site? When will that happen?
It’s coming, but all too slowly. My guess is, it will be two to four years.
In the meantime, how can families interview hospices about which services they provide?
You might find they’ll come to your home to do an assessment of whether someone is eligible. That’s a time to ask questions. Or you can call on the phone. How receptive a hospice is to these questions is the first signal of their quality.
You advise asking how long a hospice has been in operation.
Hospices in some communities come and go. You want to be sure you’re not signing up with one that’s been around a few months or even a year. More established hospices are more stable, and more people can tell you about them. The physician you’re working with may have heard about their reputations.
What else?
Response times. That’s part of hospices’ standardized surveys. They ask family members, after death, whether the staff was available on weekends and on evenings. It’s one of many measures that aren’t available to the public yet, but it’s a fair question to ask: What can you tell me about your staff’s response time should I need your services on the weekend or on evenings? How long will I have to wait in an urgent situation?
Aren’t all hospices that provide benefits through Medicare required to provide the same services?
There’s a set of services that’s standard, but how much, what the intensity is — that varies a lot. Consumers need to know that.
“Continuous care,” for instance. There comes a time when you’re actively dying, in your last hours of life, and that calls for continuous care, 24/7. You want to ask whether it’s their practice to keep a nurse or another clinician in the home when a patient is actively dying. Does the family get support? Do they see the patient through death?
You would hope that in the last hours of life, a hospice would maintain its presence, especially if you’re in your own home. But as the Washington Post just reported — and it was very disturbing — some hospices choose not to provide continuous care. In some states, a large percentage don’t, which basically means that when you’re actively dying, they don’t stick around.
Another important question: Do you have an inpatient facility, in case my symptoms become complicated? Most hospices don’t have their own facilities, but they can rent or manage a unit in a hospital or beds dispersed throughout a hospital or in a nursing home. The point is to have the capacity to manage your symptoms when they’re not manageable at home.
Respite care is a required service, right? To give families a break if caregiving for the patient becomes exhausting?
Yes, but it’s not specific, so it’s also a good question to ask: What kind of respite care do you offer, under what circumstances? Would it be a nurse or aide who comes, or a volunteer? Do you provide it once a week or twice? For how long?
It will be difficult for patients or families to undertake this research if they’ve waited until a few days before death. It sounds like another argument for enrolling in hospice early. But then, patients can get bounced from hospice if they don’t show measurable decline.
You have to assess your risk. If you’re a cancer patient, the issue of being discharged probably won’t come up. But if you have Alzheimer’s or A.L.S., they’re terminal diseases, but they can take years. You probably have to be prepared to go through reviews.
So you have to be realistic about how long hospice will take care of you. You’ll be aware of it. You won’t be surprised.