Two things can simultaneously be true:
- Doctors may wish they had more opportunities to help patients prevent having worse/later stage outcomes of a disease.
- Doctors may struggle when a patient seeks health care at an early stage, asking for strategies and intervention support against developing worse/later stage outcomes of a disease.
The struggle may be for a few reasons. There’s often a lack of systemic infrastructure to support patients who show up earlier rather than later in a disease progression, especially when the frequency/timeline of care is much quicker than the system is currently resourced for. There’s often a lack of research for these earlier stages and what effective strategies are for preventing progression and treating earlier stage outcomes.
When a clinician struggles with this, it’s not a moral failing of the clinician if they don’t feel equipped to tackle those challenges. However, I do wish clinicians would more often clearly communicate to patients about these struggles. The patient might have a choice: do they pursue another clinician who might have different resources (including time/energy) or expertise in navigating the unknown? Or do they work with the existing clinician to navigate the murky waters together, figuring it out as they go? But patients only have a choice if they realize it themselves and are equipped to pursue alternative paths – or are told that this is a fork in the path.
The challenge is this is a gray area for all of us – patients and clinicians alike. But the reality is, the gray area (for a patient) betwixt and between prevention and progression is our life. The black and white that may emerge after the gray space can be as significant, literally, as life and death. We as patients are highly motivated to navigate the gray area and reduce suffering and possibly try different or new strategies that have shown early promise (although maybe haven’t yet been tested to RCT or the ideal standard, or in the specific disease or stage of the disease in question). We as patients may not have time to wait for the evidence to evolve further.
Clinicians may be aware of the gray space that the patient has landed in. The reality that many clinicians may not know or forget – or have slipped out of their mind – is that the gray space is even more daunting to face alone. If the instinct is to simply shoot down every patient idea with “that’s not approved for use in this disease” without forthrightly contextualizing against a recognition “there’s nothing tested or proven for this part/stage of the disease”, it can begin to put cracks in a relationship. What clinicians might not realize is that a patient may not have time to be in the gray space with a clinician who simply says no to trying anything, because no one has ever studied it before and when little study is being done at all about the gray area the patient is within. Or maybe clinicians do realize it, and sometimes rely on the power of the broken systemic infrastructure that keeps a patient from finding a clinician who does feel equipped to walk through the gray area with them.
What I wish is for clinicians to be equipped to identify this situation, standing on the edge of the gray area with a patient. And to say up front, then and there, if they don’t feel comfortable pursuing off-label strategies when there are zero documented on-label strategies beyond waiting for the worse outcomes to progress. I don’t like that (because why wait for permanent damage to do something, when permanent damage is not inevitable if action is taken sooner), but I very much highly respect and appreciate a clinician who is forthright and willing to say they don’t have time/energy/feel equipped to do so.
Why? Because if I’m already in the gray space, past prevention and before serious progression, it gives me a better opportunity to find someone else who can partner there. It might take a try or two, but it keeps me from wasting time and energy and trying to invest in developing a relationship with a clinician who has already decided they can’t help me until I cross over into black and white worse outcomes.
When we talk about prevention, it’s often about preventing a disease. In the world I live in, and the body I live in – now inhibited by five autoimmune diseases, I don’t have a choice about disease prevention for the most part. My body is clearly equipped with a superstar hyperactive immune system. While I’ve seen some research working on addressing autoimmune stuff, it’s likely decades away from any cure of any one condition that I have (let alone all of them) or fixing the hyperactivity of my immune system and preventing additional autoimmune diseases. Sure, I can work to prevent other diseases that aren’t autoimmune (exercising, staying in as best health overall that I can, etc.), but my focus right now is keeping each of my five autoimmune conditions from being bigger headaches than they already are.
(As a side note, I recently read this paper looking at rates of autoimmune conditions after T1D, based on a registry analysis in Sweden of people with T1D. It’s interesting that the risk of “one more” condition following T1D is 17%, two more is essentially the square of that, etc. etc. all the way down…so the risk is typically about 17% and it’s not additive; having two does not mean you’re more likely to get three, it means you have about the same 17% chance of something else. That’s a useful mental model to me, understanding that I got unlucky 4 more times…and that combination of luck is rare among people with T1D. They went all the way to the category of “three or more” autoimmune conditions after T1D, calculating that 0.3% of people with T1D have 3 or more autoimmune conditions after T1D. They stopped there, but you can extrapolate by multiplying by 17% again and estimate it’s 0.08% for four or more…which is where I’m at. This shows me that I’m not alone in dealing with so many things, but it puts me at about 1 in 1,250 of people with T1D or around one in a million – heh – in the general population if you extrapolate based on global population estimates and assume similar rates/risks of autoimmune conditions in the general public.)
Four of the five are easy enough (although, the fourth took about a year and a half to get to ‘easy enough’, overlapping with the third taking two to three years). The fifth, though, is the gray area that I currently inhabit. Possibly because I am in tune with my body because of the experience with these other autoimmune conditions, I have been presenting to the healthcare system to address this fifth autoimmune condition earlier than most people. Like many autoimmune conditions, it takes years to decades for some people to get diagnosed. Many are diagnosed after systemic manifestations have fully kicked in, e.g. these later stage worse outcomes I referred to above. I’m in a gray area, at the edge of seeing systemic activity, and able to identify it as a red flag, but before – I hope – permanent irreversible damage has been done. The question remains, however, for me to figure out how to navigate this gray area and with which clinicians, in order to achieve care that will possibly prevent or delay or reduce the severity of the outcomes that I will end up with.
I speak from personal experience with this gray area. It’s not fun to navigate, even if you do have a really great clinician partner. But it’s infinitely more challenging to stand there in the gray, unsure of the ability or willingness of a clinician to partner with you.
