What is the difference between hospice and palliative care?
Hospice and palliative care article-The End is a series about end-of-life issues.
The voice on the phone was that of an older man. He sounded cultured, well educated, and thoughtful. Also very angry.
The man, Roy, had called me to describe some of the ways in which the health care system had failed his wife, Sheila, and him, when she was hospitalized for incurable breast cancer. (To protect patient privacy, both names are pseudonyms.) As the director of palliative care for a large, urban health system, I often receive calls like this one. Certainly more than I’d like.
Earlier in my career, before I became the person whom people like Roy called with complaints, I worked for a decade in the Veterans Affairs health care system. I was a palliative care physician, caring for veterans as they neared the end of life. I was also a researcher, doing studies to understand how the V.A. could better meet their needs. In both of those roles, I learned a lot about the medical and psychological issues that are unique to veterans who have served our country, and what I learned offers lessons for all hospitals, and for all patients, like Sheila.
When I answer calls from people like Roy, I’m usually pretty sure that the complaints I hear are legitimate. Problems of miscommunication are common, for instance, and I know that my colleagues can do a better job of managing pain or palliative care and other symptoms. That’s not unique to the V.A., or to my health care system, either. Every hospital in the country could do better.
But no sooner had I settled in to listen to a litany of concerns than I realized that this call was going to be different. Roy wanted to tell me what my health system could do better, but he wasn’t primarily concerned with pain management or communication. Instead, he wanted to point out a problem that worries me more than all of those other complaints combined.
Sheila had just received a “patient experience” survey that asked for her opinions about her recent stay in one of our hospitals. He read off some of the questions, in a voice that was tinged with a mix of anger and amusement. Those questions were about the quality of the food (“unimpressive”), the availability of parking (“O.K.”), and the cleanliness of the rooms (“perfect”).
But, he said, “You didn’t ask us about what really matters.”
What he meant, he explained, was that these questions didn’t reflect what was important to a 73-year-old woman with incurable breast cancer who knows she’s going to die in the next six months. And they didn’t assess how well we were supporting her husband, who was overwhelmed with being a caregiver and advocate, a father and grandfather. We asked for their opinions, but we didn’t ask the right questions.
We’re not alone. Hospitals are increasingly using so-called patient experience surveys to see how they can improve, and to establish their national rankings. Their results are reported to the government and many are publicly available, just as other measures of health care quality are. These results are also being tied to financial incentives, so hospitals get paid more, or less, by Medicare or insurance companies, depending on what their patients say about them.
It was those questions about the hospital’s food, parking and cleanliness that prompted Roy to call me. Those things might be important to someone else, he said, who was hospitalized briefly for a knee replacement. But not for someone like Sheila, who was facing advanced cancer and death within a year.
Roy and Sheila wanted to tell us about the adequacy of the information they received from our doctors about Sheila’s prognosis and treatment options. And they wanted to compliment the emotional and spiritual support they received from our staff. Most important, Roy said, they wanted to thank the palliative care team, which was especially helpful. But the survey they received didn’t give them a chance to share any of those opinions…..