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 Betty (Patient A) and Boop (Patient B).
Betty 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 after just a few short weeks of recuperation.
Boop, 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 Betty now think they know just what a heart attack is like (based on their own personal observations of Betty). And given how she 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 Betty and for those around her. In fact, it’s better, as she 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 Boop cannot quite figure out what’s going on with her. They learn that having heart disease is horrible. Boop seems to be still dragging her sorry ass around, not bouncing back like her friend Betty 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, Boop 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 Betty as a good and admirable patient who’s doing everything right as it is to assess Boop as having somehow failed at this patient business. We generally like hearing from positive people like Betty, and we feel uncomfortable listening to negative tales from those like Boop.
Compared to her friend Betty, we might even judge Boop 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 at a medical conference 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 conferences (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 corporate 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 Betty. 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 Boop.
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 Betty-like survivors, with nary a whisper heard about the devastating reality of so many other women.
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 about living with metastatic breast cancer. As she told the truly clueless 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, Betty) but we feel uncomfortable around all those “losers” (like Patient B, Boop).
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 useful book called Let Patients Help: A Patient Engagement Handbook. After surviving 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.”
When Susannah Fox was at the U.S. Department of Health & Human Services, she beautifully captured the differences between the heroic and inspirational Betty and the non-heroic/non-inspirational Boop 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?
♥ NOTE FROM CAROLYN: I wrote much more about becoming a patient in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (and use the code HTWN to save 20% off the list price when you order).