The internet is a wonderful thing. We all have several orders of magnitude of valuable information easily available to us than was the case twenty years ago. I remember when Wikipedia first came out and the traditionalists pooh-poohed it because it contained a few factual errors. Clearly the fact that many of these traditionalists had just lost their snobbery advantage over the rest of us had nothing to do with it. Most of us quickly learned to rely on Wikipedia as a useful source, far more extensive and easy to access than anything we had before, and also learned that if the information we required really needed to be accurate we should find a corroborating source.
Then came Google and our available knowledge leapt forward even more quickly. And it seems that now we are on the cusp of yet another transformation as ChatBots mature. If only school curricula had developed at the same pace as our new internet schools, humanity would have been able to advance even more quickly than we have. But many children still labour in classrooms being taught to remember dull facts that a simple click or two would render accessible. Still, we are going forwards.
From the start of my illness, I have been torn about how much to use Google and other sources to try to answer questions that I cannot help being curious about. The two biggest one are “how long” and “how (does this type of cancer typically develop)”. So far I have resisted the urge to consult Google, the main reason being that I prefer to trust my doctors. Yet my doctors have steadfastly refused to even hazard guesses for either of the questions.
Two sad and related trends in America are involved here. The first is that everyone seems to be a pocket health expert, ready to offer opinions on matters far beyond their education and experience. Partly this is because people do not seem to trust doctors. Partly it is because everybody has a story about how some cancer or other developed in a friend or acquaintance. And partly it is because of Google. They is a lot of rubbish available via the internet, but a lot of reliable material too. The problem is that most of this reliable material is only reliable in the hands of subject matter experts. For some reason that does not seem to give pause for concern or downgrading rash conclusions.
The second trend is about litigation. Every third advert on TV (that is not trying to plug some drug) is from an ambulance chasing lawyer, promising riches to anyone who has had an accident of any kind. Doctors and hospitals are among the primary targets of these unscrupulous lawyers, and that has consequences for how hospitals judge risks, how doctors are required to behave and communicate, and how typical people struggle to trust doctors. Even if we can trust them, in many cases we will be quick to sue them if the opportunity arises. It is no wonder that the health care system becomes so expensive when litigation is among the largest cost categories of physicians and litigation risk is so big that professionals have to pool together to share the risk, and then those pooled operations ramp up their margins to offset the risk and because their competition is reduced.
One consequence of not fully trusting our doctors is a rebound to our emotions. If we might want to sue we listen to stories from anyone and Google anything. This makes us more fearful than we might be and perhaps more angry too. I think one of the best decisions we made at the beginning of this journey was to follow a different path, one that prioritised our emotional well-being and especially looked to move past anger. I guess if a doctor cuts off the wrong side of my brain then my wife might sue, but that prospect is a long way from our everyday thoughts, and I believe that to be a good thing.
Still, on balance I would prefer to know the answers to the big two questions and to others as well. Perhaps it is partly because of the distrustful culture here, but so far we have been given no answers at all. I prefer to trust my doctors and ascribe the reluctance to answer the questions to what they tell me, which is that every case is unique and averages are almost meaningless.
I could push back harder, and perhaps in the future I will. I believe I have one reasonable justification. I know nothing about medicine, but I am a mathematician, one who specialised in the applicable aspects including probability and distributions, and so I do understand averages, and in my case I could interpret some types of information so that they really are not so meaningless after all. The doctors should feel free to push back again, quoting medical differences between cases that potentially undermine lazy averages even further, but I believe I am qualified to have that discussion.
What I will not do is consult Google. For one thing I am not very good at that type of research. For another I don’t trust myself to stay objective on a subject so critical – my analysis is too likely to be flawed. And for another I would need to find studies that reduced the medical aspects to language I could understand (and therefore are strictly limited to cancers very like my own) but sophisticated in their mathematical analysis.
I have found a few good proxies. My sister knows a little bit about medicine, a bit about statistics and a lot about internet research. She also is a good judge of what it is healthy for me to know and how to communicate it. I am lucky to have her on my side because I believe such a combination of skills to be rare. My daughter and my wife can also both add to the skill set so can be even better as a team. It is good that MSK allows family to listen in to meetings, so we can all hear opinions first hand.
I also realise that I must be careful what and how I ask questions. The quality of communication among the medical professionals I have encountered has been mixed. Some have strayed beyond their competence and others have been thoughtless in how they share information. At one point a rather junior nurse started reading out to me the technical results of an MRI, something that neither of us could interpret reliably but could do a lot of damage to my emotional state. I managed to stop her in time and made a resolution to be alert for that situation again.
By contrast, both my surgeons and both my neurologists have been excellent communicators, clear and open and straightforward. I have been able to interpret when they have resorted to code (“sometimes we are looking at years, and sometimes months”). The only issue is the rush to hide behind the claim that cases are so different rather than attempt to give an answer. And on balance I trust that this reluctance is usually reasonable and in my own interest.
But this may change once genuine trade-offs enter the equation. So far, all the major decisions in the process have been very clear and well-explained. Any risks we have taken and discomfort I have suffered have been far outweighed by potential benefits. That may be different later, and especially if there are potential gaps between the preferences of me and of my family. Then the doctors will really need to use their skills, and I hope they can avoid being constrained by the US cultural constraints. And we will also have had to think through our own preferences. What do I really want to know?
I think I know the answer for myself, though that may change as the disease evolves and I understand we should agree as a family. We have doctors we can trust for the medical wisdom, communication skills and hopefully also their ability to interpret probabilities. I would like to know everything possible from these people. From Google, or interns, or people with anecdotes, thanks but no thanks.
1 comment:
Yeah, fully understand that now.
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