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Don’t ignore death until it’s right around the corner

Last week, I had my first practical experience of the ReSPECT form, the purple advance-planning document that is shortly to replace the traditional Do Not Attempt Cardio-pulmonary Resuscitation (DNACPR) form in my area. It did not go particularly well.

As some of you will know, the thinking behind the new paperwork is to broaden the discussions that we have with our patients (and that they have with their loved ones) beyond mere attempted resuscitation – a futile endeavour in the vast majority of the patients I deal with in palliative care, for obvious reasons.

I cautiously applaud that idea. The problem lies with the time needed for the subtle discussions that the form requires. I spent an entire hour with my patient and her husband, brother and son, assembled around her hospital bed – time that is simply not available to us in primary care.

By the end of that hour, we had established one thing, and one thing only; that she (reluctantly) agreed to be ‘not for attempted resuscitation’, a decision which I tried not to overtly point out was not actually hers to make.

Everything else – what to do in future scenarios x, y, and z – was left open, and for good reason. As with birth plans, those of us with common sense and certainly with healthcare backgrounds know to keep our plans as fluid as possible.

How can we possibly know for certain that, for instance, we would want to be kept at home under any circumstances? When I’m lying in bed with my disseminated cancer, old (or perhaps only middle-aged; the ‘young’ ship has sailed) and frail, and my pulmonary embolism strikes at 3am, even if I’m weeks from death, it might still be perfectly reasonable for me to be hospitalised for symptom relief and round-the-clock comfort and care, at least for a time. Even if that is seen as an abject failure by those who feel that ‘palliative’ equals ‘to be kept at home at all costs’.

Whether we have three months or five, or three days or five is less important at the very end than that we manage to face death with equanimity and calm

And let’s be very careful about discussing options that might be completely inappropriate for many of our old and sick patients, such as admission to intensive care – what we must avoid is some sort of drop-down menu approach which does not reflect the reality of what would actually be on offer.

Of course, for patients with specific conditions with a well-documented degenerative course, such as MND, such discussions are crucial, and need to be detailed and carefully-documented, but for the majority of us, who don’t know what lies ahead, excessive detail should surely be avoided.

When I fill in my own form, I intend to keep it as simple as possible. Comfort over life-sustaining treatment at all costs, sure, if I have a terminal diagnosis to call my own by then. But beyond that, if I have capacity, I hope to be involved as events unfold. If not, then I leave the day-to-day decisions up to my medical team and my loved ones.

What matters is that we are all working on facing up to death itself, surely – that’s the real psychological work that we all need to shoulder, no matter how old we are, nor how healthy or otherwise. Whether we have three months or five, or three days or five is less important at the very end than that we manage to face death with equanimity and calm.

Admittedly, that’s hard to do in the throes of delirium, and I’m not thrilled at the prospect of dying on intravenous antibiotics as so many do these days, due to the current sepsis diagnostic craze, but let’s hope that some of the advance-planning that is currently fashionable helps with our state of mind at the very end.

If the ReSPECT form can help us to align our thoughts in that direction, bring us some peace of mind, and broach these difficult conversations with our relatives and friends, then it will be doing some good. There is just the small matter of getting my average discussion time to under an hour, preferably before my next session in general practice.

Dr Kate Harding is a locum GP and hospice doctor in Herefordshire


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