How Empowering Your Clients Makes You a Better, and Stronger, Health Advocate

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Those of you who know me beyond my work with AdvoConnection may know that my roots – the reason I started AdvoConnection – came from patient empowerment – specifically the recognition that when we are sick and debilitated, or scared or worried, most of us are unable to process the information we need to assess in order to make the wisest choices for ourselves.

I experienced it myself, and I’ve heard stories over and over again – where the illness and emotion just don’t allow for even the most intelligent, rational thinkers to conduct themselves the way they would in any other aspect of their lives. From the very human reaction to illness of wishing Mom was there to take care of us, to the ingrained-from-an-early-age attitude that “the doctor is smarter than I am, the doctor is always right, the doctor knows what’s best, the doctor knows everything there is to know….”  — the natural default is to yield discussion and decision-making to the doctor.  But doing so can wreak havoc on our health.

Most recently the subject has popped up in the AdvoConnection Forum – based on an article in the New York Times called Afraid to Speak Up at the Doctor’s Office.  The point being that as patients, with difficult symptoms, a new diagnosis, or ensuing problems, are afraid of asking questions that make us appear as “difficult” patients.  As a result, we don’t get the information we need, we aren’t empowered to make the right decisions for ourselves, and we are therefore simply defaulting to what’s being expected of us – not making smart, rational choices.

It’s what I call the “If I Ask Too Many Questions, the Waiter Will Spit In My Soup” fear. Except in this case, it can be life and death.

The discussion in the AC Forum is very much about this phenomenon as the basis for needing an advocate by one’s side in the doctor’s office.  And to that I say a loud “Amen!” Discussing with a potential client this fear of discussion with the doctor can certainly help him or her decide that you are exactly the right person to help them out – as if you have read their minds and truly understand them.

But I also see a broader picture – one that can not only help your clients improve their experiences, but can move your health advocacy practice forward, too. 

The truth is, much of what our clients need is confidence:  confidence for holding up their side of a conversation with (even intimidating) providers, confidence to leave a provider who just isn’t doing right by them, confidence to make the decisions they know need to be made – and more.

You can be the person who helps them build that confidence, and as such, you will build their trust and appreciation for the work you do with them.  For many clients (and potential clients) you will not only strengthen their abilities to manage their own medical situation, but you will expand the work they rely on you to do.  And when they tell others about how you helped them, it will be in glowing terms (great marketing!)

I’ve written up a list of possible ways this can be done – a springboard for your own ideas as well.  Improving client confidence will make you a better advocate, and will help you grow your practice, too.

AdvoConnection members can find this list by logging in to their membership dashboard, finding the Client Services Center, then Client Relations. Look for NEW!

Not a member?  Join us!

 

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FOR PATIENTS | FOR ADVOCATES | FOR POTENTIAL ADVOCATES

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Dear Abby Lights a Fire Under Health Advocates, Too

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Maybe twenty years ago, I read a Dear Abby column that went something like:

“Dear Abby, When I was younger, I wanted to be a doctor when I grew up. But life got in the way – I got married, had three kids, was a good wife…. But now my kids are grown and on their own. I’m 47 years old, but I find I still have my dream of becoming a doctor. By the time I get back into school, and do my residency, it will be 10 years before I have doctor in front of my name! What do you think. Am I too old?

Signed, Jane Smith, Dreaming of Doctoring”

Abby’s reply went something like this:

“Dear Dreaming, There are dreamers, and there are do-ers. Everyone can dream, but only the do-ers get the satisfaction of seeing their dreams come true. In 10 years you will either still be Jane Smith, or you will be Dr. Jane Smith. Are you a dreamer or a do-er?

Abby”

A few months ago, I wrote a post about the analysis of paralysis – those folks who KNOW they want to become private patient advocates, who KNOW they can do it, but who, for any number of reasons, just don’t throw the switch, telling the world they are now, officially, in practice and inviting clients to discuss their work. They may fear the risk of going out on their own, they may fear the rejection of people who don’t want to hire them, they may hate to talk to potential clients about money…

And yes, it IS a tough decision, I know that. It requires the do-er in us to overcome the dreamer in us. It requires an attitude of “I can do it!,” plus “I’m worth it,” plus “I have a tough skin,” plus other mantras that help us skate into fulfilling our dreams.

But today I’m going to ask you to think of it a bit differently. If you are one of those who just hasn’t pulled the switch to opening your private practice yet, I’m going to suggest you ask yourself, “What’s the worst thing that can happen?”

Then I’m going to suggest that once you come up with most of your answers, the ensuing statement will be, “So what?”

So, for example: maybe the worst thing that can happen will be that – you fail. You don’t acquire any clients, or they don’t pay you as they should, or you don’t cure their terminal disease.

But then I’ll say “So What?” No one is any worse off than they would have been if you hadn’t tried. You know perfectly well you are in no position to cure someone anyway (but I’m sure you made their life a little easier while they were still alive), or – you don’t have any clients now anyway – so what’s the difference? or if someone didn’t pay you – well, then, you learned your lesson about contracts and collecting money up front – and next time you will be smarter about the whole thing.

There are very few BAD things that can happen if you begin taking on clients. Yes, there may be business difficulties – but those aren’t personal. Yes, there may be difficult clients, but they are really a business difficulty that happens in all businesses, and eventually, they aren’t your problem anymore. Yes, you need to grow a nice thick skin when you go into business – but how will you grow it if you don’t create the challenges that toughen it up?

Dear Abby was right. In 10 years, you’ll either be exactly who you are, or you’ll be [your name here], health advocate, with an excellent reputation and a thriving practice. As a dreamer, you’ll spend the rest of your life saying, “If only.” As a doer, you will fulfill your dreams.

Are you a dreamer? Or are you a do-er? Who will you be – NEXT year?

(Read more about the Analysis of Paralysis)

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FOR PATIENTS | FOR ADVOCATES | FOR POTENTIAL ADVOCATES

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Spring Cleaning

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If only my closets, cupboards and drawers were as cleaned out as the AdvoConnection websites are today!

AC Members know that during the weekend, we moved – moved servers that is.  Moved the 3,910 files that comprise the two websites (membership site and directory site) from one hosting server to another – a major undertaking.  Moved the gigantic database that contains all the information about members, visitors, services, locations, explanations – all of it. Moved the zip/postal code database that helps patients and caregivers find our members, ready to help them with their healthcare system challenges. (Here’s a statistic for you – there are 868,939 zip and postal codes total between the US and Canada!)

Why move? Because we needed more space. AdvoConnection is growing faster than originally anticipated. In three years we’ve gone from our original 40 or so members to almost 350 members, so planning for the future requires a larger, more robust environment.

Moving from one hosting server to another is a little like moving from one house to another.  It’s a major undertaking, you realize how much stuff you have (some of which you really don’t need), and you vow to be a lot more organized in your new place.

All true for this exercise for AdvoConnection, too.  During the move, we cleaned out almost 200 files – just got rid of them – because they were either never being used, or they were no longer being used, or were actually duplications. We reorganized a few, too….

But why all this, and why now?  How will this affect YOU, the member (or someday member) of AdvoConnection?

Our new home allows us some extra elbow room and capabilities.  It’s time to use them! Later this week, we’ll be launching a new way for AdvoConnection’s Premium and PACE members to find the information they need on the member site. Member dashboards are about to get a makeover – a new way of navigating the site that makes better sense than what it has evolved to on its own, as it has grown over these three years.

So – if you’re already a member of AdvoConnection – watch your inbox for an announcement later this week about your new Dashboard.

And if you’re not a member – then join us!  There’s never been a better time to start or grow a health advocacy practice….  with a new member dashboard to boot.

(Now – if only it was so easy to clean up the entire healthcare system, reorganize it, improve it… )

• • • • • • LEARN MORE • • • • • •

FOR PATIENTS | FOR ADVOCATES | FOR POTENTIAL ADVOCATES

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Just Who Is Making Your Clients’ Medical Decisions?

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A 58-year old man learns he has early stage prostate cancer.  His urologist suggests he wait for a few months so they can test him again, then decide whether he needs treatment.  But the man decides to get a second opinion to find a doctor who will treat him, because he just wants that cancer gone. It doesn’t take him long to find a doctor willing to treat him as much as he’d like to be treated.

An 85-year old woman with diabetes has been diagnosed with breast cancer. Her doctor tells her she needs surgery to remove her breast, then six weeks of chemo.  Scared and fearful, she thinks for a few moments, then agrees.

…………………………

As advocates, we can’t (shouldn’t, don’t) second guess the decisions these patients have made.  But when we look at these examples, and thousands of others, we realize the biggest challenge these patients have when they are newly diagnosed is that they don’t have an objective way to assess their options. And too often, they aren’t the ones making the choices. Instead they are defaulting to whatever a doctor has recommended, whether or not that’s really the best choice for them.

Consider:

  • Their doctors don’t have time (or won’t take the time) to fully explain their options or the ramifications of each.
  • Treatment is what earns providers their income.  It’s difficult to think of them as objective when the rent is due or the staff needs to be paid.
  • Treatment is also what forces insurers to lose money, too often limiting possibilities that the patient doesn’t even know have been limited.
  • Decisions (or agreements) are usually made by these patients based on their emotions, and not on objective information.  Further, because no one has ever taught them to be smart patients, they aren’t really sure how to go about getting the information they need. Most don’t even know the right questions to ask.
  • And perhaps the biggest piece missing from any of these provider-suggested solutions is that no one has taken the time to ask these patients what THEIR values, goals or priorities are!  What do they wish for their lives?  And which option (if any) will come closest fulfilling their wishes?

It’s true – patients, who have never needed to step up to voice their own opinions before, are finding themselves buffeted more and more by a system that is set up to make money from them when they are sick, or deny them appropriate care, or in some way create a scenario that would never be of their own choosing if only they understood their options better.

Enter Shared Decision Making (SDM) 

Shared Decision Making isn’t just a description – it’s a structured process that leads patients through description (and sometimes discovery) of their own values and priorities, then looks at medical evidence for treatment outcomes, allowing the patient to compare and weigh them together.  It’s a recognition that a woman diagnosed with breast cancer at age 35 is unlikely to make the same choices for her treatment (and life) as the 85-year old patient mentioned above, just as the man diagnosed with early prostate cancer won’t see his world the same way as a man who is diagnosed in a later stage.

But the real key – the most important key – is that it’s the patient making the decisions using the information that is centered on the patient, important to the patient, and evidence based. It’s not about someone else who’s in a big hurry (and who will see dozens of other patients that same day) making a one-size-fits-all recommendation.

An Opportunity for Private Advocates and Navigators

More and more patients feel squeezed and helpless to make wise choices for themselves, and this creates an incredible opportunity for patient advocates and navigators to step up to help them do so.  Once you understand the Shared Decision Making process you will ask yourself why all treatment decisions aren’t made this way!  And you’ll want to do what you can to make sure your clients have access to the process, either by offering it yourself, or by bringing in someone to help your client work through the process.

Enter Dr. Steven Kussin, retired gastroenterologist, author of Doctor, Your Patient Will See You Now, and private advocate who focuses his advocacy work on SDM, and who is now AdvoConnection’s newest adviser, available to its members. He is ready and able to teach you what you’d like to know about getting started with the SDM process, or for you to hire (subcontract) on behalf of your clients.

•  Learn more about Steven Kussin, MD and Shared Decision Making here.

•  Learn more about the benefits of Shared Decision Making here, and how the SDM process works here .

•  And watch for our updated schedule of Call-Ins to include the topic of SDM this fall.

 

• • • • • • LEARN MORE • • • • • •

FOR PATIENTS | FOR ADVOCATES | FOR POTENTIAL ADVOCATES

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What’s a Bad Outcome? And Where Does the Fault Lie?

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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.

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