One of our AdvoConnection members, Elisabeth Russell, is featured in the March issue of MORE Magazine. The story of her journey toward becoming a patient navigator is worth reading. I dare you not to choke up when you read about her daughter’s diagnosis and treatment results. A true blessing – and very well written. (Thank you MORE Magazine!)
But there were some real mistakes in the sidebar information – and they need to be pointed out. Potential patient advocates and navigators can get the wrong picture from what’s there. At this point in our growth as a career, it’s important these facts be set straight.
I’ve wrestled with this question more than once. It’s the question raised on occasion by those who talk about universal healthcare, and a for-profit healthcare system. It’s a question asked by those who are concerned that not everyone in the United States has access to healthcare. It’s asked by almost anyone who asks me what I do for a living.
The question is, “Doesn’t providing private patient advocacy services only to those who can afford them, just create one more division between the “haves” and the “have nots?”
Lots of soul searching, and more than a few conversations have produced the definitive answer to that question. The answer is:
Several questions have come my way recently about what kinds of job opportunities might exist for patient advocates. I refer people to an article I’ve written elsewhere, but the real answer is – to be a true advocate, you must analyze who is paying for your services, and what your responsibility will be to them.
Finding an Employer
In 2011, most of the job possibilities for patient advocates are found either with hospitals or insurance companies. Hospitals have, for a long time, employed patient advocates, sometimes called patient representatives, who are tasked with helping patients. And word comes from an AdvoConnection member, through our Forum, that beginning in 2014 with healthcare reform, insurance companies will be required to have patient navigators on their staffs if they want to participate in insurance exchanges. Some have already begun to hire advocates.
But here’s the problem with those jobs.
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,
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.