No Before Times to Be Had: Part Two

Someone I know with a chronic condition has been struggling to get adequate referrals to specialists and thorough investigative screening and she was recently advised by her dietitian to “really advocate for yourself.”

This comment got me to thinking about advocacy for yourself and others as well as the catch-phrase of “patient-partnership” used heavily in healthcare spaces. My upcoming analogy is specific to those navigating chronic illness in healthcare spaces.

Most of the legal system in many of our countries is designed to be an adversarial one—the truth is arrived at through the battle of prosecution and defence.

Advocacy within a healthcare setting, for yourself or others, is seen as a proactive and positive way to receive better care. However, fundamentally, it suggests that healthcare is an adversarial space. And yes, healthcare is an adversarial space.

In a court case, the prosecution does not partner with the defence (if it does, then we know there is likely a level of corruption driving such a thing). While deals may be made and negotiations may happen between the two sides, they are each meant to represent the interests of their own side during that effort to arrive at agreement.

Really, you cannot be a partner in your care and advocate for your care. You can dodge and weave your way through, as most of us do, sometimes looking for allies and partners and other times working up your “squeaky wheel” to get the care you require, but it will be one or the other and never both at once.

You are the defence.

But the prosecution in this adversarial system is not the healthcare practitioner. Healthcare practitioners, with highly variable levels of enthusiasm, are asked to fill by proxy the role of prosecution, but it is the healthcare system itself that is the prosecution.

And as there is no judge or jury in this system, then ultimately there is no arbiter of whether the truth is revealed or not. And what would “truth” be in this analogy? We would like to think that the truth would be a correct diagnosis and proper treatment (or even potential cure). I think the truth of the matter in this analogy would be an honest relaying to the patient of how likely it is that there is accuracy in the diagnosis and what outcomes might really be achieved with any suggested treatment.

For acute conditions, defending health is a joint effort embarked upon by healthcare practitioner and patient together. And the prosecution is the illness itself—hence all our outdated rhetoric around battles, fighting and beating various illnesses. This is the dominant definition of healthcare that makes us believe that defending health well arrives at correct diagnoses, proper treatments, and ultimately a return to health.

Correct diagnoses are rarer than you have been led to believe. And from there, treatments that resolve symptoms are even less likely. Acute emergent situations are still handled in healthcare settings with quite a bit of skill and resolve. But chronic conditions evade solid diagnoses and have treatments of very limited and unclear benefit.

If you are having a stroke, advocacy for immediate healthcare intervention will reap the desired outcome because a stroke is an acute event. The healthcare practitioners can respond within the strictures of their healthcare system, and the patient can more often than not survive and heal.

But if you are an advocate for healthcare intervention when you have Ehlers-Danlos or diabetes for any symptoms not deemed an emergent collapse of your living system, then it will feel as if you are advocating into the wrong system altogether. I believe you are.

Healthcare practitioners cannot respond well, or sometimes at all, within the strictures of the healthcare system for non-emergent care needs. They become frustrated and disengaged.

If we think of the triage system, then all the symptoms that are most difficult to manage for any chronic illness are not ones that rise to the level of immediate intervention. 

What we would really need is a separate healthcare system altogether for chronic illness. If you were not always up against the acute care system, then it might look very different as to how you might be cared for and supported. 

Diagnoses and treatments are very relevant in acute care: it would be dangerous to treat a patient with interventions for a blocked colon when they are actually suffering a cardiac arrest. And while this is an earth-shattering concept, diagnoses and treatments should not be the priority in chronic illness care.

It is a trap that many people with chronic symptoms fall into: “If they could just properly diagnose what is wrong with me, then I would have access to treatments that would improve my chances of getting well.” 

Naturally, a lack of diagnosis generates the very real fear that they are missing something that is deadly and highly treatable if caught in time. And that does happen of course. As humans, practitioners can miss a condition that can be cured. Those are the stories that we read about, but they do not represent the majority. 

By far the most common path is several years of searching for a diagnosis in vain.

Next week in Part Three I will turn my attention to self-diagnosis and its relevance and impacts for those living with chronic illness.