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Patient advocates need to manage expectations

Trisha Torrey
Patient
April 29, 2012
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Consider this scenario.

Joan, age 75, living in Ft. Lauderdale, was diagnosed with Stage IV Ovarian Cancer.  Joan’s daughter, Beth, who lives in Kansas, contacts Maxine, a private patient advocate and RN who works in Ft. Lauderdale, to help her mother.  Joan, Beth and Maxine have extensive conversations about the care Joan will need. The decision is made that Joan will need surgery and chemo.  Maxine is hired to oversee the care since Beth lives so far away.

The surgery goes well.  The hospital stay is typical. Joan is discharged from the hospital, but three days later begins to show signs of an infection at her incision location.  Sure enough, it’s a staph infection which is already running rampant through her body.  Joan dies less than a week later.

A bad outcome – no question about it.

And now Beth is furious, an emotion only heightened by her grief.  Further, Beth blames Maxine for the loss of her mother because, after all, Maxine is an RN, a private advocate, who was expected to make sure her mother came through her diagnosis, surgery and chemo so she could go on to lead a quality life for many years to come.

***

This scenario is an extreme, I grant you.  But bear with me while you see how it influences every step you take, every conversation you have, as a private health advocate.

And how one simple focus and communication point could have changed the entire scenario for Maxine and Beth, too.  Because not only does Maxine need to deal with Beth’s anger now, but she has to worry that it may result in a lawsuit. (Not to mention that Maxine is probably upset over losing Joan, too.)

What could Maxine have done differently?

Maxine could have managed Beth’s and Joan’s expectations.  She could have consistently reminded them about what her role as an advocate means, how it does – or does not – affect outcomes.

Examples

Beth hired Maxine knowing that Maxine is an RN.  But at no time did Maxine explain that as an advocate, she does not perform any clinical tasks, nor make clinical decisions.  Beth thought she hired a nurse for her mother and didn’t understand the differences.

Beth is upset because her mother acquired an infection.  She thought someone would be sitting by her mother’s bedside during the hospital stay and that a bedside advocate would prevent such an infection.  Maxine had wisely recommended Beth hire help around the clock to monitor at the bedside – but never clearly explained that an infection can happen at any point, most particularly during the surgery. She didn’t manage Beth’s and Joan’s expectations by saying “a bedside advocate will be able to prevent some problems, but you should know that …”

Beth is upset because she didn’t think her mother should have the surgery.  She insisted her mother get a second opinion, a suggestion Maxine supported and executed.  Maxine worked with Joan to choose the right second opinion doctor, but Beth never knew about that.  So Beth thinks Maxine chose the surgeon, the one who ended up doing the surgery. So now Beth is angry because she didn’t like “Maxine’s choice” of surgeons. And nowhere did Maxine document, or get a signature from Joan, specifying Joan’s choice of doctors to do the surgery.

Beth is upset, too, because her mother had surgery in Hospital A, when another hospital might have been better.  She fairly blames the hospital for infecting her mother.  But she blames Maxine for recommending the hospital.  Now, Maxine will tell you that she didn’t choose the hospital – Joan did.  But at no time did Maxine ask the question within Beth’s earshot, and at no time did Maxine document (getting a signature from Joan) that the hospital was Joan’s choice.

We can only imagine what’s going to happen from here.

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So where does that fault lie for Joan’s death?  We know it doesn’t lie with Beth. AND we know it doesn’t lie with Maxine.  But we do know that Beth will, through her grief, fault Maxine.

We also know that it could have been just the opposite.  Had Maxine done a better job of managing expectations, then Beth’s emotion might have been more along the lines of gratitude – even though they couldn’t save Joan, Beth might have understood instead that Maxine had done the best she could.

Every day, as health and patient advocates, we have the opportunity – or perhaps more like the obligation – to manage our clients’ expectations.  Not only is this important for how our clients understand what they face, but it’s important for our own self-preservation and ongoing businesses as well!

Managing expectations is one of the most important business communications tools we can use – a combination of customer service and CYA. What’s good for our clients is good for us, too.  Especially when we know that we are being hired because people are scared, we owe it to them to provide reality checks.

We don’t want our clients to cloud real possibilities with wishful thinking.

Today’s reminder, then, is to constantly and consistently manage your clients’ expectations. From your first interface – phone or email – to every subsequent decision and task undertaken. Make sure you provide disclaimers and reality checks all along the way not only with any medical decisions and choices they make, but with your paperwork and business procedures, too.

Contracts, conversations and all communications should all be focused on managing those client expectations.

We don’t want or need any Maxines in our midst.

Trisha Torrey blogs at AdvoConnection and is the author of You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve).

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Patient advocates need to manage expectations
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