Ben Hallman's June 19 HuffPost blog paints a stark and scary picture of today's hospice industry. Hospice, he warns us, is big business. And it seems that business is booming. But his focus on for-profit hospices is not very helpful to patients and families who need hospice.
When people make a decisions about which hospice to enroll in, they don't need scare tactics. They don't need fear mongering about the evils of for-profit hospices. They need to choose a hospice that will deliver the best possible care for whatever time they have left. That is, they need advice. So here's my advice, based on 15 years as a hospice and palliative care physician.
(Full disclosure: I'm the chief medical officer for a not-for-profit hospice, and I sit on the board of a for-profit, so I'd like to think that I have a pretty balanced view.)
First, ask your doctor for advice. Which hospices deliver the best care? Which have the most skilled staff? Which are the most responsive?
But also ask your doctor if he or she has a financial relationship with that hospice. Some doctors are employed by hospices, and may have a financial incentive to refer. So beware.
Second, pick up the phone and ask questions. Here are a few:
"Do you provide all four levels of hospice care?" (That's routine home care, inpatient care, continuous care at home, and respite care). Medicare-certified hospices are required to provide all four, but many don't.
"Is your hospice certified by The Joint Commission or the Community Health Accreditation Program?" Abbreviated as TJC and CHAP, these are organizations that visit and inspect hospices regularly.
"Are your physicians board-certified in hospice and palliative care?" This is a good indication that a hospice takes its medical care very seriously.
"Do you measure and improve the quality of care that you provide to your patients? How?" Any hospice that doesn't have a quick and clear answer for this question probably isn't serious about patient care.
"How much charity care do you provide?" This may seem like an odd question to ask, but in my experience, it's a pretty good indicator of whether a hospice's heart is in the right place. There's no "right" answer, but beware of a hospice that doesn't offer any.
Third, interview a hospice. That's right, just as you'd interview a job applicant. (Because that hospice is applying for a job to work for you.) Ask the hospice representative to tell you what you can expect. What services will they provide? And when? Ask the representative to explain to you how they'll work around your needs and preferences.
Finally, some general advice. These aren't hard-and-fast rules. But they've served me well in finding hospices for friends and families in cities where I don't know the lay of the land.
Look for larger hospices. Larger hospices are often able to provide services, and to be flexible in ways that smaller ones can't. In my experience, larger hospices also typically have more of an investment in measuring and improving quality. ("Large" might mean a single large hospice, or a hospice with multiple offices across a region.)
Also look for hospices that are affiliated with medical centers and health systems. That's not a guarantee that the hospice will provide high-quality care, of course. But those affiliations mean that there are probably a lot of people keeping an eye on the care that the hospice delivers. That's particularly true of academic medical centers, where standards of care tend to be very high, and tolerance for shoddy care is limited.
Finally, ask around. If you have friends whose family members have used hospice, ask them what
their experience was. I wouldn't dismiss a hospice because of one negative story, but if you hear several, walk away.
If you go through these steps and ask these questions and decide on a for-profit hospice, don't be surprised. There are good for-profit hospices out there, just as there are bad not-for-profits. So above all, keep an open mind.
The facts about for-profit hospice care that Hallman and his team so painstakingly researched need to get public attention. People need to know that hospice has come a long way from the volunteer traditions of hospice care that began decades ago. It's a whole new world.
But we're doing a disservice to the public if we don't provide guidance about how to navigate that world. More people are using hospice every year, and that trend won't reverse. So we all need to know how to choose more widely.
Choosing a hospice solely based on its profit status isn't wise. There are good hospice and bad ones. There are those that are committed to patient care and those that are committed to making money. There are those that serve the community and those that serve themselves. Yes, there are for-profits and not-for-profits, but that's just one variable in a complex equation that will determine whether you or a loved one get the best possible care.
Finally, one last word of advice. Choosing wisely takes time. So start thinking early about what hospice you'd want when the time comes. How early? Well, if you were interested enough in this topic to read this blog, then now would be a good time.
People typically enroll in hospice very late. More than half of patients in the U.S. enroll in the last three weeks of life, and about a third enroll in the last week. That's too late to make careful decisions. So start asking questions now. Think of it as insurance, so when the time comes -- as it will, for all of us -- you'll be ready to make a thoughtful choice that's consistent with your preferences.