Recent cases have brought into sharp focus the power of the internet as a diagnostic tool, and also the move towards greater patient autonomy in relation to treatment options. This blog considers the implications for doctors and patients.
Hypochondria is as old as illness itself. To lighten the mood for a few moments, the following excerpt from Jerome K Jerome’s classic Three Men in a Boat illustrates the point well:
“I remember going to the British Museum one day to read up the treatment for some slight ailment of which I had a touch – hay fever I fancy it was. I got down the book, and read all I came to read; and then, in an unthinking moment, I idly turned the leaves, and began to indolently study disease, generally. I forget which was the first distemper I plunged into – some fearful, devastating scourge, I know – and before I had glanced down half the list of “premonitory symptoms”, it was borne in upon me that I had fairly got it.
I sat for awhile, frozen with horror, and then, in the listlessness of despair, I again turned over the pages. I came to typhoid fever – read the symptoms – discovered that I had typhoid fever, must have had it for months without knowing it – wondered what else I had got; turned up St Vitus’s Dance – found, as I expected, that I had that too, – began to get interested in my case, and determined to sift it to the bottom, and so started alphabetically – read up ague, and learnt that I was sickening for it, and that the acute stage would start in about another fortnight. Bright’s disease, I was relieved to find, I had only in a modified form, and, so far as that was concerned, I might live for years. Cholera I had, with severe complications; and diphtheria I seemed to have been born with. I plodded conscientiously through the twenty-six letters, and the only malady I could conclude I had not got was housemaid’s knee.
I felt rather hurt about this at first; it seemed somehow to be a sort of slight. Why hadn’t I got housemaid’s knee? Why this invidious reservation? After a while, however, less grasping feelings prevailed. I reflected that I had every other known malady in the pharmacology, and I grew less selfish, and determined to do without housemaid’s knee. Gout, in its most malignant stage, it would appear, had seized me without my being aware of it; and zymosis I had evidently been suffering with from boyhood. There were no more diseases after zymosis, so I concluded there was nothing else the matter with me.”
Jerome was writing in 1889. Two centuries have turned since then, and the internet has bred the phenomenon of cyberchondria – many of us know just how easy it is to convince ourselves after an hour or two on Google that we are suffering from “some fearful, devastating scourge”, but as long as 2006, an article in the New England Journal of Medicine demonstrated that Google could diagnose the correct condition from an input of symptoms in 58% of cases, and later studies have suggested that an intelligent person with a search engine stands more chance of making a correct diagnosis than a GP without one.
Today’s patients are empowered by the internet, and while GPs undoubtedly still dread the patient who comes in to a consultation with sheaves of papers printed from a Google search, the reality is that patients may frequently be correct at least in relation to the differential diagnosis of their conditions. Of course, the practitioner may utilise the maxim “Common things happen commonly” and advise the patient that her condition is much more likely to be a benign and frequently seen syndrome than an unusual and fatal disease. But sometimes the patient will be right.
In the case of Bronte Doyne, she had previously suffered from a rare liver cancer. When she began to suffer fresh symptoms she googled them on a US website, and concluded that her cancer had returned. Her oncologist told her to stop worrying and to stop googling her symptoms; tragically Bronte was right to worry as the cancer had indeed returned, and she died sixteen months later. Only a few days before she died she wrote: “Can’t begin to tell you how it feels to tell an oncologist they are wrong. I had to, I’m fed up of trusting them.”
It is interesting in this context to consider the “cancer gap” between Britain and the rest of Europe; Britain has an estimated additional 10,000 cancer-related deaths a year compared to the European average. About half of the difference is believed to be attributable to poor diagnosis. As a consequence, NICE has issued fresh guidance to GPs to provide a simple set of rules for when and how to test patients, and to enable them to give referrals for some routine tests without going through specialists. The new recommendations are designed to improve care for people with “a low risk of cancer but not no risk of cancer”.
All of this accords well with a move towards affording patients greater rights of autonomy and self-determination. In the recent very important case of Montgomery v Lanarkshire, which my colleague Paul has written about recently, the Supreme Court upheld the right of patients to be fully apprised of risks which they themselves would think to be significant, rather than just the risks which the reasonable doctor would consider significant.
Patients are better-informed than they have ever been, and as a result, doctors are going to have to become used to listening to them, whether they are seeking to make their own diagnoses on the internet, or making their own decisions about the levels of risk they find acceptable in proceeding with different treatment options available.