I was consulted recently about an elderly woman who refused surgery for a large bowel obstruction from a colonic mass (likely cancer). The inpatient team asked me to help with the transition to hospice and to help make her comfortable.
I went to see her. She had a nasogastric tube sucking up brown material from her stomach. Her abdomen was swollen and uncomfortable. Her primary goal was to return to walking about with her walker, and she had grossly overestimated the risks of surgery. I recommended surgery. I persuaded her that surgery would meet her goals better than no sugery. After considerable discussion, she agreed.
What a shock to the primary team! They called a palliative care consult to assist with the transition to hospice, and here I’d gone and persuaded the patient to have surgery.
In her lecture at AAHPM/HPNA this year, Diane Meier said, “palliative care is about matching treatment to patient goals.” She said it over and over and over. And she’s right. Here’s a video of her saying it (thanks to the Hartford Foundation’s Health AGEnda blog for the video). Notice at the end, when someone pointedly asks her: if the intensive care unit gave someone their best chance of meeting their goals, would palliative care recommend intensive care? Yes. Palliative care is about matching treatment to patient goals.
I would estimate that 90% of the time, after engaging in discussion with patients and their family, the treatment shifts to a more comfort oriented and less life-sustaining approach. But maybe 10% of time, as in the case above, the opposite occurs. And that is OK. If 100% of the time the treatment matched to their goals was exclusively comfort-oriented, then we’re probably doing something wrong. We consult to clarify what treatment best matches patient goals, not to convince patients to abandon life-prolonging care in favor of hospice/DNR/etc. The former makes us useful and accessible; the later makes us the death squad.
Patients, family members, and colleagues ask what palliative care is all the time. I used to give a complicated 3 point answer. Now I start by saying, “palliative care is about matching treatment to patient goals.” This is a very straightforward and powerful message. Notice how it differs from other possible messages: “we focus on keeping people comfortable,” “we provide an alternative to aggressive life-prolonging care,” or “have you heard of hospice?”
How do you explain palliative care to your patients and colleagues? To your hospital administration? Does your message differaccording to your audience, and should it?
As a community, we should try and agree on a message. Before others do it for us.