by Carolyn Thomas ♥ @HeartSisters
I read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*
The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for “Patients Excluded” conferences protested online:
“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”
Sara Riggare, a Swedish engineer, blogger and PhD student living with Parkinson’s disease, calls the trend toward Patients Included health conferences a type of ‘to-for-with’ model: going from doing things TO the patient, then doing things FOR the patient, to finally doing things WITH the patient.
In some circles, however, there appears to be little tolerance for hearing the patient voice at conferences – or elsewhere. Many experts who work in health care – either as providers, administrators or entrepreneurs – defend this exclusionary practice by insisting that, after all, we are all patients anyway at some time or other in our lives.
That insistence immediately tells you something important about the maker of such a statement, namely: they’re not patients.
What they may have been at some point in the past was a person who sees a doctor or goes into hospital for diagnosis/treatment defined as acute care medicine (broken bones, pregnancy complications, strep throat, ruptured appendix, knee surgery, etc). Coincidentally, I’ve experienced each of these (temporary) conditions, which means I have some clue about what it’s like being on the receiving end of acute care. During each incident, I was indeed a patient, but under relatively short-term treatment.
In acute care, as I like to describe it, you get sick, you get treated, you get better – and then you thank your brilliant doctor.
The term is defined as a branch of secondary health care in which a patient receives active but short-term treatment for an injury or episode of illness, an urgent medical condition, or during recovery from surgery.
So when I was discharged from hospital after a one-month stay being treated for near-fatal cases of ruptured appendix and peritonitis (both emergent acute care conditions), I never gave my appendix another moment’s thought after that. Ever.
I became, quite simply, no longer a patient.
In fact, I propose that acute care is NOT, despite the claims of those “We-are-all-patients” folks, what actually being a patient is about at all, as I discovered only after being told I have “significant heart disease” in 2008.
Significant heart disease, as I was soon to learn back then, is known as a chronic and progressive condition.
The pain and debilitation of being acutely ill can get better. The pain and debilitation of being chronically ill can last forever. In fact, many living with chronic illness feel terrible. Every. Single. Day. And while those receiving acute care can expect that feeling temporarily terrible will gradually diminish, in chronic care we often live with the chilling reality that it feels terrible now, and it’s likely to get even worse over time.
Acute care medicine is not the same as chronic care medicine, and thus acute care patients are not the same as chronic care patients.
And equally important, 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. This is as true for chronically ill patients of differing diagnoses as it is for those sharing an identical diagnosis.
And, by the way, this is equally accurate for every physician who has ever shared a professional opinion with colleagues, and who cannot claim to speak for all physicians.
Dave de Bronkart is widely known in conference speaking circles as “ePatient Dave“. He’s also the co-author, with Dr. Danny Sands, of Let Patients Help: A Patient Engagement Handbook. After surviving stage IV kidney cancer in 2007, he became a blogger, health policy advisor and international keynote speaker representing the patient voice at health care conferences.
Yet as Dave himself wrote last March:
“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.”
After he recently spoke at a conference in Belgium during which “real patients and families” delivered what he described as “a punch in the gut – genuine suffering portrayed for real,” Dave had this advice for conference organizers in his response to a Susannah Fox blog post:
“Want to know if you have Patients Included? Ask this: ‘Are there any actual sick people in the room?‘
“I’ve become wary of myself in many ways, since I’m no longer sick. Even I know it makes a big difference when there are actual sick people involved.”
He also offered this example to those who insist: “We’ll all be patients someday”:
“I can tell you first-hand – no, that doesn’t work.
“Until you’ve actually had your life on the line, until you’ve had a diagnosis that stops you in your tracks, knowing your life will never be the same – until then, you don’t KNOW what it is to be in need, to really need help. And support. And care.
“No, damn you; no, we are NOT ‘all patients’. It makes a DAMN BIG DIFFERENCE when there are ACTUAL SICK PEOPLE in the room.
“Until your life changes like this, you DON’T KNOW!”
And as Dave reminded me recently, this quotation by Ed Roberts (a leading figure in the international disability rights movement) sums it up nicely:
“If we have learned one thing from the civil rights movement in the U.S., it’s that when someone else speaks for you, you lose.”
But just as industries like Big Pharma are co-opting the growing interest in patient engagement, some non-patients are now co-opting patient status by repeatedly insisting that they, too, are patients – just like the ones they’re paid to work with or write about. “We are all patients…” is their unfounded and self-centred claim.
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 ill people lying in hospice beds was simply not the same as knowing anything whatsoever about what it’s actually like to be those people, nor was that experience even remotely adequate as prep for my future role as a patient myself.
Experts known as population health managers are those who work on improving the systems and policies that affect our health care quality, access and outcomes. These experts typically describe three basic types of patients living with chronic illness:
- the high-risk patient (living with at least one complex condition, multiple co-morbidities, and psychosocial issues; about 3-5% of all patients)
- the rising-risk patient (living with multiple risk factors that could push them into the high-risk category if left unaddressed, such as a patient with diabetes, a sleep disorder, and high blood pressure; about 20%)
- the low-risk patient (living with a relatively well-controlled chronic condition; about 75%)
But even among these three broad categories, you’ll find people within each group who live very different lives compared to their similarly-diagnosed fellow patients. For example – depending on their type of myocardial infarction and the degree of their resulting heart muscle damage – you’ll meet heart attack survivors who recuperate uneventfully, return to work, run marathons, feel great, and check in with their cardiologists only for a friendly annual follow-up chat. See also: Which patients does the “patient voice” represent?
At the same time, you’ll meet identically diagnosed heart attack survivors with ongoing cardiac issues who are no longer able to work ever again, who live a much-diminished life compared to their pre-MI days because of their symptoms, and who become the frequent flyers of the health care system.
You might also meet the family caregivers of the seriously ill. These are the heroic individuals who, because of the intensity of their day-to-day caregiving relationships, can speak on behalf of their loved ones in a way that no paid health care provider or industry entrepreneur or population health manager could ever claim to.
These unpaid caregiver/advocates may not be patients themselves, but they are indeed the next closest thing, and their voices matter.
Meanwhile, if you work in health care and you still believe the “We are all patients” myth, I offer some useful tips for you here. To help you grasp the difference between a bona fide patient and somebody who just gets paid to talk about patients – here’s a handy-dandy list thanks to Casey Quinlan, author of Cancer For Christmas: Making the Most of a Daunting Gift, writing on the role and status of “the patient”:
- it can be a role that comes and goes, and returns, different from before, or similar
- it can be part of your identity – something felt and lived strongly, or coexisting quietly – and can develop and change
- it can be a view others have toward you, whether you share their view or not
- it can mean you’re highly dependent on others (anesthetized for surgery) or highly independent (self-managing) or co-dependent (co-managing)
- it can be visible or invisible to others depending on what and how you share your experiences, and it can complement or clash with work that you do – or be irrelevant to any work you do
So if you don’t recognize yourself in any of these categories, then please stop saying: “We are all patients”.
Because you’re not.
♥ This post was also published as a guest post in Prepared Patient Forum, Health Care Social Media Monitor, Carly’s Blog, The Mighty, and an edited version in the British Medical Journal. Thank you all.
♥ 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 30% off the list price when you order.
Q: Do you believe that “We are all patients”?
Why Physicians Must Stop Saying: “We Are All Patients“ (a shorter version of this post published in the British Medical Journal on January 14, 2014)
Which patients does the “patient voice” represent?
Patient engagement as described by 31 non-patients
“Us” vs “them”: the under-served patient speaks up
The new country called Heart Disease
Has industry co-opted patient engagement?
When heart patients meet the Black Swan
Why the Harvard Business Review was wrong about patients
A NOT-To-Do List for the chronically ill
30 little things about my invisible illness you may not know
This post was also picked up as a guest post on The Mighty
69 thoughts on ““We are all patients.” No, you’re not.”
I consider myself a patient with all sorts of modifiers in mind, as I am one of the miracle survivors of a Stage IV kidney cancer, thanks to the same treatment that Dave deBronkart received. My own recovery made me both an anomaly in the cancer world, and nearly ashamed to be healthy when so many other kidney cancer patients were not only doing badly, but often because of inadequate treatment and inexperienced doctors. (And I am being nice here.) The devastating stats have improved for those diagnosed with Stage IV disease, but the lengthening time of survival generally puts someone in a chronic state of disease at best.
Since I was doing so well, and could really use that experience to understand what went wrong in the diagnostic process with me and so many others, and the lack of good care for many, many more, I became a patient advocate.
Though I can be a voice for patients, which is not really the voice of a patient in active treatment, I can hope to sensitize some doctors and the general public as to kidney cancer issues, and educate both to work together to get the best possible outcomes.
And I am part of the Society to Improve Diagnosis in Medicine whose Los Angeles conference in November of 2016, includes a FREE patient summit, as it has done for years–run by patients for other patients AND for non-patients.
Collaboration and respect, and not easy for any of the parties!
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Hi Peggy and thanks so much for sharing your unique perspective here. That odd sense of being “nearly ashamed to be healthy” is surprisingly common across many catastrophic diagnoses (ironically, juxtaposed with that sense of feeling glad to be alive). And I love how you describe your desire to be a patient advocate. Thanks also for that info on your LA conference in November. Diagnostic error is a subject dear to my heart – literally. I was also involved in the patient video that accompanied last summer’s launch of the IOM report on diagnostic error (although I was distressed by the ultimate failure of the committee to recommend mandatory reporting – “Not the right time!” they said).
Reblogged this on Managing Your Doctor and commented:
There is more bad feeling out there than I realized about patients not being included in medical conferences – here’s an example of an obviously heartfelt post about the subject.
Reblogged this on Flying Dragon.
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Hmmm… I guess I see the statement from a much different point of view.
If you don’t like “we’re all patients”, you can’t negate “we’ve all been patients”. From a health care worker perspective, I’ve always thought it was important that we see things from a patient’s point of view as well as from our point of view if we happened to be the patient having services provided. You know, the “do unto others…” jazz?
I tend to believe if you can’t get health care professionals to identify with patients and potentially see themselves as patients then they’re just a number, basically a non-entity whose only purpose is to help either the physician or the hospital make money. Trust me, I’ve been in the room when the financial people are talking, sometimes administration, and the question pops into my mind “how will that help patients?” Sometimes I’ve asked that question and gotten stares, which I’ll give back.
I do understand the main point of view of this article. I just don’t want anyone negating the belief that slapping people around with the mantra of “you’re not a patient” is going to make them think more about them or their needs. After all, it took a lot of people a lot of time training and practicing and thinking about patient needs so you could stop thinking about your appendix ever again after a month.
Mitch, thanks for sharing your viewpoint here. I’m not “slapping people around” by telling them that they’re not patients – I’m merely reminding them of the reality that “do unto others” (although a nice concept) is woefully absent in far too many health care relationships as Real Live Patients can attest. It’s why health care professionals who suddenly become diagnosed with serious chronic illness invariably profess that this awful experience will actually change their practice forever. Why? Because “identifying with the patient” is certainly not a given in the profession, which is the entire point of my post.
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