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.
And this is as true for chronically ill patients of differing diagnoses as it is for those sharing an identical diagnosis.
Dave de Bronkart is more 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 beating 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:
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:“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.”
He also offered this example to those who insist: “We’ll all be patients someday”:“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.”
And as Dave reminded me recently, this quotation by Ed Roberts (a leading figure in the international disability rights movement) sums it up nicely:“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!”
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.“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.”
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%)
At the same time, you’ll meet 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
Because you’re not.