This site is intended for health professionals only

At the heart of general practice since 1960

Read the latest issue online

GPs buried under trusts' workload dump

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

Dr Kate Harding

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

Rate this article  (4.41 average user rating)

Click to rate

  • 1 star out of 5
  • 2 stars out of 5
  • 3 stars out of 5
  • 4 stars out of 5
  • 5 stars out of 5

0 out of 5 stars

Readers' comments (4)

  • Knowledge is Porridge

    Seems like the retrospective audit will find 75% of hospital deaths could have been anticipated, with 50% being cared at home instead. All the gift of hindsight of course. So the anticipatory care is excitedly dumped on GPs, but the real world prospective outcomes are rarely as planned, many patients and family bewildered by the intrusive requests to plan their death which is then signed and pinned to the fridge door to confirm their expected demise.
    Madness!
    District nurses in panic, patient dying at home with syringe driver, but doesnt want a DNR form. What if she dies? They would HAVE to do CPR...
    Of course they wouldn't, but procedures and pathways for end of life care are a risky business. Is the reSPECT the thin edge of the LCP wedge? (Yes) Will it make our country a better place to die? (No)

    Unsuitable or offensive? Report this comment

  • oooH, the forbidden D word, thou shall not speak of it in the UK as the NHS was created to prevent it. This country has never accepted death as a natural process of life, if you need proof just look into the media, regulatory bodies disciplinary hearings, GMC guidelines etc. The final proof is that the NHSI/DOH has now created a new department that aims to investigates every death, natural or otherwise. Good luck with your RESOURCES, when it dries welcome to the health care of the under developed country.

    Unsuitable or offensive? Report this comment

  • Having been faced with a complaint from a family for not "saving" the life of a 97 year old heavily demented and bed bound patient who had a dense stroke and I palliated in her care home with explanation to a family member throughout…. I look forward to being investigated by NHS!!!!

    Unsuitable or offensive? Report this comment

  • I think everyone should be forced to read Atul Gwande’s book on death and dying before being involved in these discussions.
    Also think there should be a cut off age for entry to intensive care ward. Slightly controversial but at least clear and transparent.

    Unsuitable or offensive? Report this comment

Have your say