The American Hospice Foundation, an advocacy group that has worked to improve care for the dying and bereaved since 1995, closed its doors in summer 2014.
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.