Apr 07, 2010

Hospice: Don't Wait for the Doctors to Bring it Up

One of the many weird experiences I had during my father's final illness was the tragic disconnect between my father's actual condition and the attitude of the doctors who cared for him. My father was emaciated, with a collapsed left lung, advanced coronary heart disease, and a chronic neurological condition that was causing his nerves to stop working. Bad, right?

But despite our repeated attempts to get SOMEONE in the ICU to listen to our requests for a discusssion about when it was appropriate to discuss palliative care (treating a patient's discomfort, but giving up on aggresive treatment of the underlying condition), we got nowhere. I mean it was like we were speaking a completely different language.

The one remotely sympathetic doctor promised us that if, "he felt he was just moving the pieces around he'd let us know." That was excellent, except 2 days later that doctor was out of the ICU rotation and we never saw him again.

And guess what? After almost a month in the hospital, "moving the pieces around" was pretty much all that happened. In the end, they discharged my father to a nursing home in worse condition that when he entered the hospital -- still with a collapsed lung and now unable to swallow. Pretty depressing. And still, the main doctor insisted my father was "cured."

What do they teach in medical school? Denial?

If you are caring for someone who is very ill, and getting nowhere with the doctors, find your local hospice and get their help. Don't expect the doctors to tell you when it's time. Find out if there's a palliative care program at the hospital and get in touch with them, aggresively if possible. (Sometimes the doctors don't want them involved, Argh. It's like the Twilight Zone.)

For a detailed discussion of hospice care, see Long-Term Care, by Joseph Matthews (Nolo).