Doctor knows best? Er, no…

And not least because patients like me, who are medically savvy, and have time on our hands – more time than most GPs to be scrupulously fair, and some consultants – and are equally capable of reading medical journals and research papers, and keeping our fingers on the medical world’s pulse in respect of our own condition(s).

It might sound arrogant, but I defer to no GP, and few consultants, that I’ve met, in my knowledge of what ails me –I can read medical journals and research papers just as well as they can – OK, I might have to look up some more specialist terms, but I suspect many GPs do too. And consultants – after all, it’s many years since medical school, when they HAD to know them.

This should work both to my advantage and that of the doctor – I know what he or she is talking about, so no time need be wasted explaining. It should be a partnership of single-subject equals.

Never works out that way – doctor knows best still rules as far as most GPs and consultants are concerned! And I suspect that doctors are bound by the terms of their malpractice insurance to explain ad nauseam, no matter how well-informed the patient. But it’s “doctor knows best” that’s the real problem – especially when they only think they do.

Dr Newall wasn’t best pleased when I refused left ventricular catheterisation because it carries a 24% risk of stroke, as described in this document – something he hadn’t felt moved to share with me. Whatever happened to the principle of “informed consent”? I shouldn’t have had to go home, look up the procedure, and find out it might well turn me into a turnip – he should have been fucking up front about it. But, no, because he’s the doctor, and I’m just supposed to take his word for it. And he must have known I’d go home and check it out, because we’d talked about just that, so just what did he expect?

He suggested I should use the American Heart Association as my source – not helpful as it’s a subscription site (if you want anything useful), with subscription levels aimed at well-heeled doctors. There are plenty of high-quality free sites though.

And later, I discovered that left ventricular catheterisation isn’t even necessary, as an echocardiogram is, apparently, quite capable of providing the same information, as per this document:-

Note that the last sentence of the first para describes catheterisation as an “…unnecessary risk.”. I quite agree.

Dr. Newall lost interest when I missed/cancelled several diagnostic procedures through illness (hardly surprising, and I did write to him explaining why), but seems to have no conscience about being willing to subject me to a procedure that might result in my brain being turned to mush – and as that’s one of the few parts that still works reliably (don’t ask, this is a family show), I can’t begin to tell you how much such a cavalier attitude infuriated me – and still does.

And not content with that, a chemically-induced-stress echocardiogram is still on the agenda, yet that, too, is dangerous, as I said in my last post. How many people from Arrowe Park Hospital, busily blaming me for the breakdown of  the “relationship” between me and Newall (what bloody relationship? – I saw him once in January, he’s made no contact since), do you think have thought it a good idea toshare the information that this test has a 1 in 210 chance of putting my life in danger? Among many other things that could go seriously wrong.

Not a single person has volunteered that information. All the appointment letter says is:-

“You may(sic) require a tube to be inserted in your arm to give you special medication, the aim being to give us a better understanding of how your heart is functioning. The test is not normally unpleasant and takes about 30 minutes”

Which is the purest, triple-distilled, bovine ordure, the sort of think you might say to a child, not an adult, and – again – drives a coach and horses through the concept of informed consent. For example, it is NOT “special medication” – hell, it’s not medication at all – it’s a combination of drugs designed to stress-load my heart. The concept of medication is that it might improve my condition – this could make me seriously ill or, at worst, kill me, not least because nobody knows what effect those drugs will have on the cocktail of drugs already sloshing around my system. And as I said yesterday, I don’t want to be the one to find out. And I’m not going to be.

And whoever said it’s not normally unpleasant, based on this Lancet article, is being just a tad economical with the actualité. It can be exceedingly unpleasant, up to and including life-threatening, for roughly 1 in 8. That is not a negligible proportion. I’ve no idea how many it’s just moderately unpleasant for, it doesn’t say – quite a few would be my guess.

So here we have two tests, either, or both, of which is capable of doing me serious harm, or worse, and nobody thinks it worthwhile to mention it?

Doubtless I’d get a clipboard shoved under my nose on the day, with a form to sign, couched in impenetrable medical terms and while I haven’t got my glasses on, exonerating them from all blame if it all goes to hell, but that’s not good enough.

The appointment letter should contain sufficient information for a person – any person, not just me – to make an informed decision,** without recourse to the Internet, including all the things that can go wrong, and the statistical probability of each. Only then can a patient give truly informed consent. “We’d like to do this procedure, sign here please,” might have been acceptable once, but not any longer.

**Not least because pulling out early is more cost-effective for the hospital than pulling out once you’re there – though I sure they rely on “Oh sod it, I’m already here, I might as well,” to get them through with most people.

And while I’m feeling seriously disenchanted with APH, let’s just mention the fact that they have a CT scanner, so rather than going for tests capable of harming me, they could have scanned my heart at any time in the past 5 months – the 5 months in which Newall was apparently doing his best to pretend I didn’t exist.

And here’s a happy thought to end on – I can’t find any mortality figures for catheterisation of stress echo, and I’ve been wondering why that should be. I think I know.

That people do die during, and after, these tests I have no doubt, as they are often, like me, in pretty dire straits physically, just as I also have no doubts that their deaths are ascribed to their condition, NOT to the procedure.  Hence the lack of information – and the popular belief that doctors bury their mistakes. I used to think that this was just ill-informed cynicism.

Not any longer.


2 thoughts on “Doctor knows best? Er, no…

  1. I with you on this Ron, if it wasn’t for my research both my son who is very disabled and my self would not have got our essential diagnoses. Polite but very determined persistence plus a tendency to send emails to MSP’s and the Scottish Health minister eventually got them to listen. I now think my son’s HMS could be EDS so the campaign continues. All we ask is that they LISTEN and seriously consider what WE are saying.
    My thoughts are with you Ron, I hope you get the correct medical support.

    • Thanks Sue. I’m beginning to think I’d be best served just walking away from the whole mess, and buying my own meds. The cardiologist’s claim, in the letter in this post that the tests are essential so that they can “substantially change the course” of my illness, is a lie. It can’t be changed medically, it can only be managed. And I can do that.

      And the buggers never DO listen. Or, if they do, they go away and do their own thing anyway.

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