Discussing end-of-life decisions

Every now and then, in my work as a physician, I have to broach the topic of impending death with a patient. As a doctor who specializes in carrying mostly for people infected with HIV, that used to be a common discussion, and happily, with very effective medications which we now have available, the discussion in the context of HIV/AIDS is increasingly rare.

And, although I believe passionately that we providers of routine primary care –  that’s what I do for my panel of HIV-infected patients – vaccines, health maintenance counseling, hypertension and diabetes management, etc – that we should engage our patients in a proactive conversation about advanced directives, and what they might want at the end of their lives, I admit my frequent failure to do so. You get busy in the clinic. There are so many goals to accomplish. So the talk gets delayed.

And sometimes the issue finally gets forced to the front of the agenda.

Which is never the best time to have the discussion.

That happened to me last week. And it wasn’t in the context of my HIV work, but in the other clinic where I am spending increasing amounts of my time and effort – the ID clinic, where we see a variety of infectious problems not related to HIV. The patients in that clinic often have wound infections from surgery, or joint and spine infections. Some patients come for evaluation of Lyme disease, or other tick-borne illnesses or travel-related infections.

My role in this clinic is NOT that of primary care provider. I’m the consultant. That means my job is to answer a specific question, and not necessarily manage all the medical problems of the patient. But, sometimes, i’m faced with patients who either don’t have a primary doctor, or they do, but that provider is not addressing a problem that needs to be addressed. Dicey territory!

On this particular day, I knew that I was going to have to bring up the palliative care discussion.

Why?

Well, this particular patient, we’ll call her Eleanor, has been in and out of the hospital for the past several months with a Stage IV decubitus ulcer on her lower back, a really large gaping hole.  And she has an underlying medical condition which compromises her ability to heal.   And, she has been suffering increasingly from nausea, partially due to the antibiotics we had her on, and that was preventing her from eating adequately. Her resulting relative malnutrition was additionally compromising her wound-healing capacity.

She had been home from the hospital for a few weeks, and had a home nurse coming to visit three times a week to change her dressings.  She had daytime medical aides with her while her husband was trying to keep them solvent by continuing to work.  She really doesn’t want to go back to the hospital, and the last time she was in the hospital, she stated repeatedly and clearly that she really just wanted to be at home, enjoying time with her family.

So, taking a deep breath, I launched into my “palliative care” talk.

More on that soon… (since this post is already far longer than I’d planned, I’ll serialize this story).

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