Lessons from The Loss of a Patient

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,

“It’s not an advocate’s job to save a patient’s life.”

For some of you veteran patient advocates, and for those who come to advocacy from a health career like nursing, that statement will likely make you nod your head. This is not news to you. It does serve as a good reminder that you can only do what you can do – and your objective is to do it as well as possible. You already understand that road smoothing and life saving are two different things.

But for others who are new to the career of patient advocacy, or who come from different backgrounds, my advocate friend’s statement may be jarring. If you are among this group of advocates, it will either be the statement you return to when you lose your first patient, or, if you have already lost lost one, it will offer a bit of solace.

Sometimes we need to re-learn that lesson — that saving patient’s lives isn’t part of our job descriptions.

As advocates, we are facilitators. It’s our job to provide our patients with the best resources to help them make the decisions that are right for them. When we do our jobs right, we help our patients improve the quality or quantity of their lives.

When they live longer, or stronger, then it may be because we took them to the right people, or provided the right background information, helped them make good decisions, or got the insurance company to approve something previously denied.

Are those life-saving services? They may turn out to be so – but it doesn’t mean that our job was to do the life-saving.

The lesson then, is that we need to manage our patients’ expectations, just as we need to manage our own. As much as we would like to provide life-saving services, that’s not our role, and it’s important our patients understand that, too. We may rescue them from information-overload, or put out the fires caused by problems from medication conflicts but in general, no, our role is not to save their lives.

We are advocates – facilitators – and we make the good things happen. Losing a patient isn’t our failure, but a reminder that we did our jobs as well as we could, helped them for as long as we could, and overall had a positive influence on our patients’ lives for as long as that could last.

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