Which patients does the “patient voice” represent?

9 Aug

by Carolyn Thomas  ♥  @HeartSisters

There are patients. And then there are patients. 

Let’s consider, for example, two friends of about the same age, same height, same size, same socioeconomic demographic – each one (in an amazingly freakish coincidence) a survivor of a similarly severe heart attack, admitted to the same hospital on the same day. Let’s call these two made-up examples Patient A and Patient B.

Patient A is diagnosed promptly in mid-heart attack, treated appropriately, recovers well, suffers very little if any lasting heart muscle damage, completes a program of supervised cardiac rehabilitation, is surrounded by supportive family and friends, and is happily back at work and hosting Sunday dinners within a few short weeks of recuperation.

Patient B, on the other hand, experiences complications during her hospitalization, recuperation takes far longer than expected, her physician fails to refer her to cardiac rehabilitation, she has little support at home from family, her cardiac symptoms worsen, repeat procedures are required, she suffers longterm debilitating consequences, and is never able to return to work.

Yet despite these profound differences, physicians would still describe both of these women with the same all-inclusive descriptor, “myocardial infarction” (heart attack). 

The family, friends, neighbours and co-workers of the freshly-recovered Patient A now think they know just what a heart attack is like (based on their own personal observations of A). And given how A has bounced back, heart disease must not really be that bad after all! She’s fixed! Life is pretty well back to the way it’s always been for Patient A and for those around her. In fact, it’s better, as A now realizes how precious life is and decides that from now on, she will live her life to the fullest!

Meanwhile, the family, friends, neighbours and co-workers of Patient B cannot quite figure out what’s going on with her.  They learn that having heart disease is horrible. B seems to be still dragging her sorry ass around, not bouncing back like her friend A has already done, not acting like her old self anymore, distressed over her worsening condition, worn down by ongoing cardiac symptoms, and worried about her future. She doesn’t have a positive attitude! One day, she hears a cardiologist interviewed on a TV talk show who describes people like her as “cardiac cripples”.

That doctor’s not the only one making dismissive judgements. It’s as easy to assess Patient A as a good and admirable patient who’s doing everything right as it is to assess Patient B as having somehow failed at this patient business.  We generally like hearing from positive people like Patient A, and we feel uncomfortable listening to negative tales from those like Patient B.

Compared to her friend A, we might even judge Patient B as not even trying to get better – because like many people living with chronic illness, and as everybody around her agrees, she certainly looks perfectly fine.  

So which is the more accurately representative heart patient example?

Trick question, my heart sisters: there is no such thing as a one-size-fits-all patient – no matter what the diagnosis happens to be, and no matter what medical textbooks tell us.

I often remind others that, even though I’m a heart patient, a blogger, a Mayo Clinic-trained patient activist, and a public speaker who has spoken to thousands of women about the very important subject of their heart health – I can’t possibly speak for all patients, any more than one physician onstage can pretend to speak for all other docs.

Similarly, full-time family caregivers, parents or spouses of patients (often-overlooked but crucially important resources) can raise important voices – especially when more than one of them are invited to speak at the same event.

It’s why I’m always so glad to see more than one patient voice represented at health care events (events often identified by the Patients Included designation).

It’s bad enough that we have blatantly slimy examples from industries like Big Pharma that are co-opting the growing interest in patient engagement for their own commercial gain. But now more and more non-patients are co-opting patient status just by repeatedly insisting that they, too, can speak for patients – just like the ones they’re paid to work with or write about.  See also: Patient Engagement As Described By 31 Non-Patients

In reality, these non-patients are no more qualified to speak for patients than I was when I worked in hospice palliative care. Even many years spent seeing very, very ill people lying in hospice beds was simply not the same as knowing anything whatsoever about what it’s actually like to be in those beds, nor was that experience with patients even remotely adequate as prep for my future role as a patient myself.

Just recently, I advised a room filled with health care administrators and bureaucrats that, while I was pleased to accept their invitation to offer my personal perspective during their Patient-Centred Care planning meeting, that disclaimer was all I could guarantee: the views of just one patient.  Me, and only me. I really wished there had been more than just me representing the patient voice around that table . . .

As I wrote here in a previous post:

“Not all those living with a chronic illness are the same as all others with chronic illness – yes, even those with the same diagnosis.

“Just as I do not and could not ever pretend to represent the experiences of all other heart attack survivors, those who make sweeping statements about ‘what patients need’ or ‘what patients want’ cannot possibly be speaking on behalf of all patients lumped together as if we’re one big homogenized voting bloc.

“And this is as true for chronically ill patients of differing diagnoses as it is for those sharing an identical diagnosis.”

It’s an important statement, because there are some patients who do seem to believe they have been somehow beatifically tapped to represent that patient voice.  

And this is seen most often, of course, in patients most closely resembling the nicely-recovered Patient A.  That’s simply because such patients must by definition be healthy enough to contribute considerable energy to the task – energy that is beyond the capacity of many still-ill people like Patient B.

And don’t even get me started on the pinkified jolly excess of breast cancer fundraising/awareness events in which women living with late-stage metastatic cancer are virtually never the patients invited onstage to cheer on the crowds. Better to invite only those inspiring patients who have nicely “beaten” their cancer foe and “won” their battle against the enemy within. Thus we see crowds dominated by Patient A survivors, with nary a whisper heard about the devastating reality of so many others. Just look at how the late Lisa Bonchek Adams was publicly villified in mainstream media (specifically by high-profile columnists in The New York Times and The Guardian) for daring to write in such unflinching and indelicate detail about her own terminal illness story. As she told Bill Keller at The Times:

“I am public about this disease in order to shed light on the daily lives of women living with this diagnosis, rather than hiding behind the pink party line that is the only one that gets the spotlight.”

We like to be inspired by winners (like Patient A) but we feel uncomfortable around all those losers (like Patient B).

Dave de Bronkart is arguably the most famous professional patient out there (often better known as ePatient Dave). He’s the co-author, with Dr. Danny Sands, of the really useful book called Let Patients Help: A Patient Engagement Handbook. After beating stage IV kidney cancer in 2007, he became a blogger, health policy advisor and popular international keynote speaker representing the patient voice at health care conferences.

Yet as Dave himself wrote in 2012:

“People need to remember that although I advocate for listening to patients, I myself am only one – and I was only sick for six months.

“Every time there’s a patient panel, the audience experience broadens and improves – but I should never be the sole patient voice.

I’m sometimes invited to be the volunteer patient voice at conferences, meetings or public events – and these invitations can often smell like I’m the token patient on an event organizer’s To Do list, assuring that the “Patients Included” tickbox will get checked off.

But even if it means just one lonely token patient at the table, it’s better than having some health care professional onstage make sweepingly inappropriate excuses for excluding patient participation by saying preposterous things like:

“After all, we are all patients at one time or another.”

My response to that, as I wrote in the British Medical Journal, is:

“NO.  YOU’RE NOT.”

Susannah Fox of the U.S. Department of Health & Human Services beautifully captured the differences between the heroic and inspirational Patient A and the non-heroic/non-inspirational Patient B when she responded recently to patient advocate David Gilbert’s wonderful blog post about the stereotypical Patient As Hero:

“We need to measure the hills AND the valleys, the light AND the dark, the places that are visible AND invisible to mainstream media and conference organizers.

“No knock against the (patient) speakers who are able to get up on stage, but let’s not forget those who cannot.”

Q: Is there really such a thing as a ‘patient voice’ that can speak for all of us?

See also:

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24 Responses to “Which patients does the “patient voice” represent?”

  1. Handy Orten September 2, 2015 at 8:07 pm #

    Over a relatively short space of time, the activity makes them more able to critically appraise past research and hopefully enables and enthuses them to contribute more effectively and confidently to future research by joining patient panels, advocacy groups etc. Even by enabling carers to have a more meaningful and constructive dialogue with health professionals over the care of their loved one makes the activity a very valuable one.

    Liked by 1 person

    • Carolyn Thomas September 2, 2015 at 8:27 pm #

      Thanks for that, Handy… Such a good point about caregivers, often the unappreciated bystanders in medicine.

      Like

  2. Ursery August 10, 2015 at 10:30 pm #

    Another one hit well out of the ballpark, Carolyn. Thank you.

    While reading this, I was thinking how the Spectre of Patient B is so often used to keep Patient A eternally upbeat, grateful, and above all… nice. That is, Patient A likely has or *will* have days when she drags her sorry ass around, too. But who wants to lose the praise/esteem/status that you get from being the successful one, the healthy one?

    After all, her doctors and other medical professionals get an ego boost from her “recovery,” so she’s not the only one happy at her rodeo. She’ll get some subtle (and not) messages to keep quiet in difficult times — no knocking that tiara askew on her up-do. Of course shell be doing herself no favors in the process.

    (One of the many reasons I valued Lisa B Adams’ work was that she told the truth, she suffered, loved life, and clawed and worked for every sweet moment of it. Like lots of people, I was appalled at the attempts to shame her into silence. Shame is so often the invisible cudgel used on the Patient Bs among us.)

    Kudos to you for not wanting to be the exceptional one, the representative one — the Sidney Poitier of patients! It’s so very easy to be seduced by that siren song, as I’m sure you know. Not to take anything away from Patient Dave, but we need to look at some of the reasons he’s so popular with doctors — and patients. First (as he points out), his illness and suffering were short-lived. Certainly it was no vacation, but it didn’t linger. He didn’t have to build a life around a chronic illness. And who among us wouldn’t want tidy when it comes to illness?

    He’s also white, male, well-spoken — pretty much a mirror image of many doctors (and certainly the image of doctors in popular culture), all likely reasons they love him. (I don’t think he’s ever been slammed with being troublesome, uppity, ungrateful, or any of the other adjectives applied to people who are–or fear becoming– the dreaded Difficult Patient…). I’m so pleased that he uses the spotlight to acknowledge the wide range and diversity of patients. It may take a while, but with you, him, and others singing that song, it might eventually get through.

    Keep kicking butt.
    Angela

    Liked by 1 person

    • Carolyn Thomas August 11, 2015 at 8:19 am #

      Hi Angela – what a thoughtful and eloquent response! Thanks so much for taking the time to add your comment. Loved the “Sidney Poitier of patients” analogy… Reactions like yours do indeed inspire me to “keep kicking butt”. 😉

      Like

      • Ursery August 11, 2015 at 8:28 pm #

        Truly glad to be of service, m’dear. (And ’twas your post that sparked the eloquence…). Thank you, again, for all you do, who you are, and the truth you tell.
        A.

        Liked by 1 person

  3. Sara Twycross August 10, 2015 at 2:29 am #

    What a great and interesting article. I am definitely patient B. I have congenital heart disease. Whilst I have recovered from two open heart surgeries, 3 pacemaker changes, two LAD dissections and restenosis and bypass surgery … Other things like severe scoliosis, deaf in one ear, speech defect, I could go on. I look fine and a young 40. I have a disabled bus pass, use a stick and a disabled blue badge, yet I get looks all the time; people question why I am in the disabled seat on a bus? Why I am not at work? Why I am stopped to catch breath whilst walking?

    When in hospital for things, I get all the students doing their study cases and they use me as exam patient. It’s so good to feel so useful and to challenge doctors with something other than textbook cases. I like to feel that I have helped widen their experience and that if someone else with my condition comes along, they can treat them more effectively – so in some ways I am also Patient A.
    Sara

    Liked by 1 person

    • Carolyn Thomas August 10, 2015 at 6:53 am #

      Thanks for this unique perspective, Sara. I’m also glad you mentioned how patients can help to educate students in hospital. There are facts in medical textbooks, but there’s no education like encountering a real live patient like you – particularly one living with multiple chronic diagnoses. You are indeed both a Patient A and Patient B!

      Like

  4. Jennifer August 9, 2015 at 11:14 pm #

    It’s lovely to hear from fellow Patient Bs. When I went for my first open heart surgery to have a valve replaced, I was told I would probably be home in 5 days. In fact it was 2 weeks until I was discharged home. Less than a week later I was re-admitted to hospital for an unusual complication.

    When I finally started cardiac rehab, a friend went with me to the psychology classes, because my husband was the only spouse “too busy” to go to one night class a week. At the physical part of the rehab, a man was excited to introduce himself to me and ask me some questions for a talk he was putting together. I was not only the only female he had met going to the post cardiac fitness classes, but at age 48, I was the only person under 60!

    Eleven years later I had a second open heart surgery, to replace the other major heart valve. Now when I’m in the hospital, streams of student nurses, medical students and medical residents ask if they can listen to my heart with both beats clicking artificially.

    A patient is not a patient is not a patient!

    Liked by 1 person

    • Carolyn Thomas August 9, 2015 at 11:51 pm #

      Jennifer, you’re kind of a “special” Patient B! 😉 Hope you’re doing much better these days, clicks and all…

      Like

  5. JetGirl August 9, 2015 at 9:39 pm #

    Carolyn, Mary Corinne’s comment reminds me….. I have to take a picture for you. I just switched jobs to become Director of Construction (fancy way of saying “you’re HOW old and still playing in the dirt!?) at a new hospital. Guess what?? They have two huge posters in the lobby – guy and girl – and outline the different heart attack symptoms!!

    Thought it was great to see . . . now if only the ER docs are that enlightened.. Meet them this week….

    Liked by 1 person

    • Carolyn Thomas August 9, 2015 at 11:54 pm #

      I know there was a time not that long ago when even the possibility of returning to work was a distant dream, so congrats on that new job, JG! That IS good news about those two lobby posters, isn’t it?

      Be nice to the ER docs…

      Like

  6. Mary Corinne August 9, 2015 at 6:01 pm #

    What a great conversation. I AM STILL Patient B!! After being treated for five years in a male-dominated heart & vascular clinic, moving to a cardiac clinic with female cardiologists was enlightening! My former male “God complex” cardiologist actually had the nerve to compare my health situation to another male patient of his. Basically saying I could not possibly be experiencing what I described because he had someone with similar symptoms in his care!

    No two patients are alike! Especially male vs female. I am beyond sick of defending my health because doctors are stuck believing statistics over patients’ actual issues!!!

    I have had a couple people tell me recently that I should be a patient advocate due to my experiences in the health care arena. I was a medical insurance claims adjustor/customer service for many years. Than worked as a hospital biller and finally a dental office patient coordinator before heart failure made working impossible three years ago.

    I am well spoken and understand the plight and struggle navigating our complex system.

    I thoroughly enjoy this site.
    Best regards ladies, and keep up the fight.

    Mary Corinne

    Liked by 1 person

    • Carolyn Thomas August 9, 2015 at 6:46 pm #

      (First of all, and completely off-topic, I love your name. I come from a big Catholic family – not uncommon back then to name every girl baby Mary-something, e.g. Mary Elizabeth, Mary Frances – or my cousin’s name, Mary Michael!)

      You are so right when you say: “No two patients are alike! Especially male vs female.” As cardiologist Dr. Nieca Goldberg says in her aptly-named book: Women Are Not Just Small Men!

      And no doubt you would make a good patient advocate because you’ve had intense real-world personal experience yourself!

      Like

  7. Carly Medosch August 9, 2015 at 4:47 pm #

    Yes! I am always so uncomfortable to be the token patient. I will speak up for patients not present (I recently did this when discussion turned to Continuous Glucose Monitoring in the cloud used by people with diabetes), but I prefer to speak with them.

    I don’t identify with much of my own primary illness community, so I agree that even within a diagnosis, we are not all the same! And as much as I want to be empowered, I’m limited by time and energy, so there are definitely patients more specialized in their knowledge than I am!

    To Susannah’s point, one big reason I spend so much of my vacation time to attend events as a patient is because I know so many people cannot (either due to health, finances, or not feeling safe coming “out”). I’ve experience the fear, and expect to one day again be too ill to attend.

    Liked by 1 person

    • Carolyn Thomas August 9, 2015 at 5:14 pm #

      Hi Carly – so glad you shared your unique perspective here. Spending your vacation time to “attend events as a patient” brings up yet another issue that you and I have discussed previously – the discrepancy between NON-PATIENTS who are paid a salary to show up at conferences/meetings as part of their job (with an expense account to bill for travel/hotel/meals – or if self-employed, can use these expenses as tax write-offs) and PATIENTS who have to take vacation time/lose a day’s pay, and cover all costs personally if they want to participate in the same event.

      As I once said, I can no longer afford (both financially and health-wise) to be ‘honoured’ by any more invitations to speak at health conferences that fully expect me to pay my own way for the ‘privilege’ of speaking to them!

      I couldn’t help but think of you when I attended that meeting I mentioned here, the one filled with hospital administrators and bureaucrats (some of whom had been flown into town for this specific meeting). I was in fact the only person at that table who was volunteering their time – in order to help all of the non-patients there understand something about the patient perspective. Perhaps this is why it’s so rare to see more than one patient at these events… ?

      Liked by 1 person

  8. Isabel Jordan August 9, 2015 at 7:37 am #

    Thank you for writing this. It’s lighting a fire under me to do the same. I’ve been wanting to write something around the theme of tokenism and putting those patient speakers on the special pedestal of ‘You’re so strong’ so as to effectively dismiss the experience every other patient.

    The only way to defeat that is to have more and varied patients at conferences, in committees and in positions to speak their reality in positions of influence.

    My experience comes from parenting a patient, so the perspective is shifted, but truly, Bravo, for the words written here.

    Liked by 2 people

    • Carolyn Thomas August 9, 2015 at 7:58 am #

      You raise such an important point, Isabel! The parent’s voice on behalf of their child is so important – but there can’t be and should not be only one kind of acceptably sanitized acceptable message from such parents! Please let me know when that fire under you inspires you to do that blog post!

      Like

  9. The Accidental Amazon August 9, 2015 at 6:50 am #

    Yes, yes, yes, yes! Another stellar post. It often strikes me that the patients who need most to be heard are those who are least likely to be able to participate in any opportunities to represent ‘the patient perspective,’ because they are too ill to do so. There’s something very wrong with that.

    Thank you, Carolyn.

    Liked by 2 people

    • Carolyn Thomas August 9, 2015 at 7:06 am #

      Hi Kathi – that same thought strikes me, too. Meanwhile, it’s that perky healthy Patient A onstage that then becomes the poster child for what a “good patient” should look and sound like…

      Like

  10. JetGirl August 9, 2015 at 6:44 am #

    So true, Carolyn! I WAS patient B (obviously I really didn’t want to get better) until I became patient A and now few want to hear about my patient B experience.

    They just want the heroic patient A story.

    Liked by 2 people

    • Carolyn Thomas August 9, 2015 at 6:52 am #

      Hello, JG! Well, thank goodness you sat up straight one day and finally decided you “wanted” to get better . . . 😉 So glad you did get to tell both sides of that story!

      Like

      • Kim C August 9, 2015 at 11:39 am #

        Hi Jet Girl. Remember you!! I am still a B Patient, and a former clinician, and this is still a real bumpy journey. But I am trying to be as positive as I can. I am not depressed as so many would like to say I am. Just sad and frustrated. Sad I’m basically homebound, and my quality of life is not the greatest… and frustrated I “look great.” The majority of cardiologists still laugh at or dismiss Patient B’s ..we are losers and non-fixable, and with recent Health care REFORM, we are the ones swept under the rug even more.

        So JG, if you get the opportunity…please make them listen to your Patient B perspective… It’s important too, you know that for sure… but the ones who laugh at us and call us loser need to know too..including our cardios.

        Liked by 2 people

        • JetGirl August 9, 2015 at 9:32 pm #

          Kim!! So good to “hear” from you 😉!! So sorry you don’t get relief. You know how people don’t believe you are sick because you look fine??? Well imagine how they don’t believe I was EVER sick because not only do I look fine, but I have energy and stamina and all those things I couldn’t have before. Fortunately I have videos of my hospital trips and my Mayo clinic trips when I couldn’t walk without help! Still they see me as eternally well. You and I know better?

          Liked by 1 person

          • Kim C August 10, 2015 at 11:59 am #

            Yes, those who have tred in our shoes are the only ones with a true understanding. Unfortunately for me after the diastolic dysfunction took hold, my heart issues are progressively worsening it seems.

            But I am not a head case or a malingerer because I look “normal”. I think the general public, many medical staff, and even at times family take the “looking normal” as eternally well, too. How I would love to return to Medicine and gainful employment myself…but have to face reality too.

            But not depressed. Just have to work a heck of a lot harder finding those silver linings in the clouds- but they are IN there…and I still count my blessings daily. In 2012 I had a cardiac arrest secondary to severe LAD spasm , so just happy to still be here.

            But JG, glad to “hear” too you are doing so well and rebounded. AWESOME.

            Liked by 2 people

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