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An awfully big adventure

July 9, 2014

Up to now, I’ve been very lucky with my health. Outside of work, my only contact with the medical profession these many years has been the repeat prescription for migraine tablets that I put in about six times a year. Every so often, I find the completed paperwork returned to me with a message written on it: Please make appointment for blood pressure check. I never do though. Why? Well, firstly because I regularly check my blood pressure myself, and it’s fine. If there was a way to download the readings I take at home directly to a database at the surgery, I might be interested; but there isn’t, and in its absence I can see no reason to burden staff  – who I don’t doubt are already chronically overstretched – with the non-problems of someone who isn’t ill.

But there is another reason – and although it’s difficult to articulate, I’m going to give it a go. It’s this: I don’t want to be a patient. And the reason I don’t want to be a patient? Possibly not what you’re expecting: I don’t want to be a patient because I don’t want to be in a place where I’m expected to unquestioningly subscribe to a belief in the absolute supremacy of my personal rights. Speaking not as a professional now but as a private citizen – it makes me uncomfortable. I don’t want a conversation that’s only about what others can do for me. I find it childish, like being spoon-fed. I want it to be just as much about the things that I can do for others.

The idea of individuals’ rights as the guiding principle of health care is almost impossible to challenge. Of course it’s right that service users be respected, listened to, updated and seated firmly in the driving seat when it comes to controlling their own destinies. But it is also possible to argue that the superficial allure of patients’ rights is being used as a political cloak to hide uglier truths.

In an article I quoted in a different context last week, Richard Vize recently stated that ‘[Jeremy] Hunt has skilfully positioned himself as the patient champion while avoiding more difficult questions about the future of the NHS’. In other words, a certain amount of dishonesty is in play. On the one hand we are being told we have a perfect right to demand whatever we want from our health service; on the other, that same health service’s ability to provide every last thing for us is being seriously eroded, and may well be eroded further.

Although a judicial rather than a parliamentary ruling, the outcome of the recent Janet Tracey case – which centred on patients’ rights to be consulted on decisions about Do Not Attempt Resuscitation orders – sharply illustrated this dilemma. In an at times impassioned debate on Twitter last weekend, no one disagreed with the abstract principle that it is axiomatically correct to involve the patient – and significant others of their choosing – in discussions about the deeply personal question of how their life will end. I certainly didn’t. But that that doesn’t mean that implementing the practicalities will be unproblematic or that there won’t be unintended consequences. And in order to confront that, we first have to acknowledge it.

One problem is that of clinicians simply not having time to do justice to conversations that require exceptional levels of sensitivity. And no, that isn’t just an excuse. Hospitals are increasingly busy, and patients are increasingly sick. Clinicians can’t do everything that’s demanded of them. It’s not a question of not wanting to have the conversation or not believing it’s the right thing to do; it’s one of not enough hours in the day. Medical tweets from the weekend bear this out: ‘a complex discussion took me over two hours today. Not always possible’; ‘I took two hours discussing with relatives on Friday, only for another relative to come after I left and demand another two hour discussion with night doctor’.

Hospitals are full of frail elderly patients who, as prolific medical commentator Dr Gordon Caldwell observed, can survive their current admission, but probably can’t survive Cardio Pulmonary Resuscitation. For most of them, the Tracey ruling will make no difference whatsoever. They will receive appropriate treatment, their recovery will be uneventful, they will continue by default to be ‘for’ resuscitation – either through lack of time to discuss it, lack of training on the part of professionals, or because there’s no specific reason to think the patient will have an arrest in the first place, so why upset them by implying they might – and they will be discharged home blissfully unaware that it could ever have been an issue.

One group, meanwhile, will pay the price. They are the small minority of frail elderly in-patients who deteriorate – both unexpectedly and rapidly – to the point where a decision about resuscitation has to be made when they are unable to articulate their wishes themselves, and the family is unprepared, or miles away, or both.  And – before anyone on Twitter self-righteously accuses me of talking out of my backside – perhaps I could point out that I speak as someone who on Christmas Eve 2009 walked into an utterly futile CPR attempt on my own mother – one that I had expressly requested should never happen. You can read the full story elsewhere on this blog if you want to.

The alternative is for resus status to be discussed with everyone who is admitted – or perhaps everyone who fulfils certain criteria related to age and co-morbidities. The good news is that this could be entirely achievable – but only if those of us who collectively constitute society take responsibility for doing a lot more thinking about our personal wishes long before we ever arrive in ED.

The Department of Health’s End of Life Care Strategy document from 2008 signalled the rollout of the now-discredited End of Life Care Pathway across the NHS. One of the most noticeable differences between it and One Chance to Get it Right which has just been published and covers the same subject matter, is that the earlier document contains a whole chapter entitled Death, Dying and Society. It’s like a breath of fresh air.

Here are paragraphs about ‘the consequences of lack of openness and discussion about death and dying’ and suggestions about how to ‘promote public awareness and change attitudes’. One Chance contains nothing comparable. No responsibility is placed on individuals, or indeed on society as a whole, to prepare for death, or talk in advance about their wishes and make them known. Instead, the onus is all on the professionals: to communicate, to plan, to involve.

Following the Janet Tracey ruling, the risk is that more people will be denied a peaceful death and subjected instead to inappropriate (for which read hopeless) resuscitation attempts because, rather than discuss it, doctors will simply duck the resus issue. Anyone who is not accepted to be actively dying will remain ‘for’ resuscitation. Whether this is what the public really wants remains to be seen. But if it’s not, then people have to start taking some responsibility for speaking up for what they do want.


For the Janet Tracey ruling see: . Don’t be put off by fact that it’s a legal document. It’s an easy and very interesting read.

For the 2008 End of Life Strategy, see:

For the new document One Chance to get it right, see:

For an interesting discussion of the possible influence of TV medical dramas on public perception of resuscitation and end of life, see:

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