Patient advocates need to manage expectations

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.


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.

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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  • Michael Mank

    Managing patient expectations should be extremely important for physicians, as well. Such communication and maybe even tort reform in health care would potentially lead to less defensive medicine. This could then produce more efficient spending tied with better outcomes.

  • Sue Wintz

    The piece that is missing is how Beth’s anticipatory grief apparently wasn’t addressed.  As a professional chaplain, what I saw in the beginning story descriptions were numerous flags that should have been assessed.  This is a reminder of how managing patient and family expectations needs to be a team effort because every member of the team brings a different expertise to how care is managed and communicated.

  • S

    Two comments:1: The assumption of “fault” (ie: So where does that fault lie for Joan’s death?). Ovarian cancer debulking operations are far from low risk. Without knowing the whole story trying to level “fault and blame” maybe incorrect at any level.
    2: Maxine was hired as a advocate not as a family member. Beth should not have abdicated her own role as the closest family member simply because she lives out of state (if that is what Joan wanted of course, she is the patient not Beth). This really is an American phenomena. Ask any doc, we all have conversations with loved ones out of state in acute circumstances. I do at least 1-2 times per week. As long as this is Ok with the patient in question or there is a healthcare proxy. You commented on conversations between maxine, joan, and beth but where were the docs involved in all of this?   

  • Steven Reznick

    Patient is supposed to have a physician who is her advocate.Patients need a medical doctor who knows them and stands up for them.  I am not saying that in this or any other situation it would have prevented a complication and post surgical mortality but it would have helped make sure the issues were addressed.  Calling the post surgical hospital stay ” typical”  is a misnomer. With understaffing,financial constraints of hospitals these days, the desire to get people out of the hospital especially Medicare patients being paid via a DRG ( flat fee by diagnosis regardless of length of stay) make every hospitalization an adventure and none typical.  Couple that with a carcinoma with a poor prognosis and an intrabdominal and intrapelvic high risk procedure and the seeds are sown for a disaster.  
    Sometimes it is hard or impossible for a loved one or family member or health care  surrogate to be present at the time of surgery or hospitalization. Having someone present makes a difference in alerting the care team to clinical situations that are changing. If you hire an advocate for your family the ground rules for what you expect them to be doing need to be very clear and concise.
    Even with the best of preparation things happen. I had a patient with multi system disease enter the hospital for necessary laparoscopic surgery this past week. I saw him pre operatively and spoke with the surgical team and outlined my concerns and thoughts. I spoke with his cardiologist and we shared our concerns and developed a care plan that we discussed with the surgical team and family. I saw him doing well three hours after surgery. I came back the next morning to see him and he had been discharged and was aleady on his way home.. He wanted to go home and his surgeon changed the game plan and sent him home before he had voided freely or had a bowel movement. He ended up being driven to his urologist that same afternoon for placement of a foley cathter for urinary retention and I saw him at his home the next day  for a post operative ileus and ultimate obstipation. None of this would have happened if the pre op plan had been followed or if the patient ,his wife or the surgical ARNP who changed the plan had called to discuss it.
    Surgery and hospitalization is dangerous and more so today in my area because of clinically inexperienced and often culturally different over worked  nursing staffs working with hospitalist services who do not know the patient. There is great pressure from hospital administration to ” move” patients out quickly. With all the  publicity about multidrug resistant bacteria and hospital related deaths, families want to move their loved ones out quickly.  Sometimes that extra day or so is the difference between a good result and a bad result. Nothing substitutes for having someone on location who knows the patient and can recognize when things are not going well. Under those cirucumstances you need a care team who can be available to evaluate and treat the problems in a timely manner.

  • davemills555

    Gee, look how far we’ve come! There’s no better example of how broken, dysfunctional and completely failed our health care system really is if a patient needs an “advocate” other than the do-no-harm advocacy of the initial provider. Sort of like hiring a lawyer to check on the performance of your lawyer, huh?

    • Steven Reznick

      The patient is 75 years old in this case, living alone with a new diagnosis of a horrendous disease, requiring major surgery with a prolonged recovery  under the best of circumstances , followed by additional treatment.  With no loved ones living nearby , under the best of circumstances, this patient would have needed assistance with both her illness and the activities of daily living. The need for help and supervision is not an indictment of the system. It is more an indictment of the destruction of the nuclear family and the realization that families now live far apart geographically and are unable or unwilling to assist their loved ones in times of health crises like they once did.

      • pattiern

        Agreed.  The woman would have been dead in six months, no matter what the course of treatment was.  Stage IV?  We know there must have been mets everywhere. IMHO a decent advocate with health care credentials would have had a long talk about prognosis, treatment, and the concept of palliative care.  The patient would have been spared a fruitless operation, and the daughter would have had time to say goodbye.

        This is precisely the road to billions of dollars spent futilely in the last siz months or year of life that docs and nurses keep talking about.  The Grim Reaper is coming for everyone, and we have to think about quality of life rather than extending it for a few horrible months, weeks, or days.

  • Stephanie Frederick, RN, M.Ed.

    This underscores the need to have a holistic, integrative health approach when working as an (independent) advocate.  My experience (Advocate, RN/HealthEducator) has shown me that when a trust relationship is established, and the patient (and family) realize that all aspects of their health (body, mind, spirit) will be addressed, a softening happens.  I start with “where the person’s at”, and offer guidance to find the type of care and practitioners the patient is wanting, and ready to choose.  However, I saw my best laid plans not work when I was advocating for a man with an underlying borderline, violent personality (not disclosed to me by referring MD). It has NOT affected my passion for continuing my practice as an Integrative Health advocate.

  • Patient Commando

    This story is symptomatic of the culture of litigation in the US. Sounds to me like this patient “advocate” needs clients to sign release forms. It doesn’t sound like there’s an expectations problem. Treatment options were discussed and mutually agreed upon.

    Patient advocacy, whether one fights insurance companies or pursues malpractice claims, requires adherence to basic client rights. Just as many practitioners of patient centred care have a declaration of values governing the relationship, so should advocates, as well as all private clinics and those involved in the delivery of care.

    I’m not suggesting a universal bill of patient rights govern all relationships, but if patient advocates don’t involve their clients in a fully participatory, collaborative decision making manner, then who are they advocating for?

    I’d say a huge number of law firms are using this story to identify a new area of business – representing patient advocates.

    Zal Press

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