When a patient considers a certain treatment, there are specific things they want to know:
- Will this make me better?
- How long will that take?
- How long before I can stop it?
- Will I get side effects?
- How bad are they?
- How long do they last?
- How much will it cost?
When a patient asks these very relevant questions, they may find themselves frustrated by the answers, which almost always start with “It depends…” Then follows a long explanation with lots of caveats like, “in most cases…”, “we tend to find that…”, “the literature suggests…”, and often concludes with, “let’s try it and see”.
This tends to come with the doctor’s encouraging but slightly sheepish grin. The patient is then bustled out clutching their prescription, perhaps a little hopeful, maybe a little confused, and certainly with no real idea how the treatment will go.
What usually happens next is the lottery of a Google search. The problem here is too much information, and with no guide to its quality. Often the patient finds a consumer forum, wading through reams of advice and experiences, which is well-meant but subjective and conflicting – and usually negatively skewed as well. People are far more likely to post about bad outcomes than good ones.
Looking for something more objective, the patient may then land upon the company’s pharmaceutical information. Most of that will be inscrutable jargon, but disconcertingly clear is the list of potential side effects. Here she will find anything bad that has happened to anyone, anywhere, and enthusiasm for the treatment understandably wanes. A final effort will send the patient to some authoritative source such as Johns Hopkins, but there she meets the same measured but empty pronouncements that sent her to Google in the first place.
When a doctor waffles around a patient’s questions, he is not being unnecessarily difficult, or even looking to cover himself. What transpires in the consultation’s awkward twilight is a verbal logjam that comes from two people talking at cross-purposes, because they come from very different places. The doctor is wrestling with an entirely different set of questions:
- Which treatment has the best evidence?
- What do the latest studies show?
- What is the consensus among my colleagues?
- Would anyone criticise this decision?
- Is this safe?
The impasse is essentially numerical. The doctor sees hundreds of patients and will face this kind of clinical decision thousands of times. Meanwhile the patient is seeing this one doctor about this one problem. The doctor wants to employ best practice over thousands of decisions, based on the evidence of thousands of patients in clinical trials around the world. The patient wants a single answer for his individual problem in this moment.
The doctor wants to reassure the patient, “Yes, this treatment works! It will make you better!” – and she may be right, if she were talking to entire cohort of relevant patients. The evidence says that the treatment does work, that patients will get better … overall. Alas that doesn’t mean that this particular patient will get better, and it doesn’t say when, or at what cost. If she offered a guarantee for every patient, inevitably, for some, she would be wrong. And for those patients, that doctor was not just a little bit wrong, but 100% wrong. The fact that she was right 95% of the time is invisible to the unlucky patient, and totally irrelevant. Hence the doctor avoids promising anything at all, and the patient leaves unsatisfied.
For patients facing this tricky conversation, let me offer a few suggestions:
- Recognise that your doctor will almost never give straight, iron-clad answers for your particular situation (doctors that do are gamblers, and rare).
- Ask questions that your doctor can confidently answer, such as:
- Approximately how many patients have you treated with this?
- How many were better 6 months later?
- How many had to stop because of side effects?
- If you gave this treatment to 100 patients like me, how many would you expect to improve? How many to recover entirely?
- Were you weighing up any alternatives?
- Any sources you can recommend for me the read further?
The trick is to translate your individual case into the doctor’s overall experience. Some doctors will be good enough communicators to do this automatically. Others will find a refreshing vein of clarity through your questions. A few may flounder and have no answers at all. Unfortunately these doctors may have simply picked up their prescribing habits at random, from drug companies, or from what they heard someone else doing. This you should take as a sign that you may need a second opinion before embarking on any serious treatment.