Lessons from The Loss of a Patient

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Sooner or later, it happens to every patient advocate or navigator who works with patients on the medical aspects of their care (as opposed to other forms of advocacy, like billing or legal advocates).

One of “our” patients – someone whose hand we have held, who we have protected from problems in the hospital, who depended on our advocacy expertise as a way to make the rough road through disease and debilitation smoother… A patient we had built a comfortable and friendly relationship with, a patient we invested ourselves and our work in…

That patient dies.

And we feel like we have failed.

It’s the nature of advocacy work that patients don’t come looking for us until they have been diagnosed with something that will, perhaps, eventually end their lives.  That’s why they seek our help.  They are fearful, they don’t understand the overwhelming amount of information they are expected to immediately comprehend. They have decisions to make and feel incapable of making them.  They, or the caregiver who better understands their predicament, searches for, and finds, that one person who can help smooth the road…  the advocate.

And it’s our nature, as advocates, to want to rescue our patients from their fears and frustrations, and to save them from all that grief. But as one of my wise patient advocates friend reminded me,

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Doctor Recommendations – Do You? Should You?

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I was more than a little surprised in a conversation this week with an advocate who is not (yet) a member of AdvoConnection.  OK. That’s putting it mildly. I was actually stunned.

“Why do people feel well served by you?” I asked him.

“Because I have a beeline into all the good doctors,” he replied.  And when I asked him to explain further, he said it was because he knew the best doctors to recommend.

[Pause. Letting that sink in…]

In conversations with both long-time advocates, and lawyers, too… and honestly – what makes common sense – is that a patient advocate should never make a recommendation about a doctor.

Here’s why:

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Preparing Patients for Primary Care Troubles

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Good primary care physicians are becoming harder and harder to find.

You may not have noticed it yet, but I predict that a year from now we’ll find it almost impossible to find primary care doctors who are willing to take on new patients – at least any primary care doctor worth seeing won’t be doing so.

Smart patients AND their advocates know that today is THE day to be sure they have good relationships established with primary care doctors.

Why? Two major reasons:

First comes the fact that medical students spend some time in school, then choose their specialty area.  They contrast the excitement of surgery or saving a heart patient’s life, with the sniffly noses and broken legs of primary care. Then they figure out that as a surgeon or neurosurgeon,

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Enough is Enough! Helping Elderly Patients Make Decisions

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One of our AdvoConnection members, Ken Schueler, shared a favorite article of his, published in JAMA a couple of years ago, and a good reminder of one of our roles as patient advocates.  Written by Dr. Jennifer M. Soyke, it tells about an elderly patient named Lisa who passed away from Genug Syndrome.

(Unfortunately, JAMA requires a subscription to read this piece in its entirety, so please forgive paraphrasing here – but I think you’ll get the point…)

Never heard of Genug Syndrome?  You won’t find it in the medical literature.

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