What is the future of care for the dying?

Kate Granger is an Elderly Medicine Registrar at Pinderfields Hospital in Yorkshire. She tweets at @GrangerKate and blogs at drkategranger.wordpress.com shutterstock_137790233


As a vocal advocate of the Liverpool Care Pathway I have experienced a wide range of emotions since the publication of the Independent Review regarding its use, ‘More Care, Less Pathway’.

Initially I was shocked something which had become a routine part of my post registration working life was going to be scrapped. I cannot recall such a prominent change in practice since I qualified. Personally I always found the LCP a very useful framework to employ when caring for dying patients.  As the shock subsided I will admit to some negative emotions; I was upset and angry but mostly disappointed; disappointed that our efforts to dispel the media misrepresentation and scaremongering had been in vain. A feeling of indifference followed. This is a rare feeling for me to experience when it comes to anything Palliative Care related; I am usually so passionate.

Now I look to the future hopefully with positivity and the fantastic opportunity this offers us all to try and make real improvements in the way we care for the dying. It is clear that the LCP has become ‘toxic’ in the public perception; to ignore this and carry on regardless would be completely inappropriate and extremely foolhardy. In fact instead of heeding the NHS England guidance for the interim period whilst the new ‘end of life care plans’ are being developed, to continue using the pathway where good practice exists and ensure effective communication with patients and families, I do not feel able to continue using the pathway at all now. The majority of my colleagues locally feel the same way. I think it would be an almost impossible task to recommend using the LCP to patients and relatives in light of the Review’s recommendations; if the pathway is not fit for purpose then surely that applies now, and not just in 6-12 months time.

So how do we look after people who are dying? The central, fundamental principle of Palliative Care as I see it is holistic care; seeing a whole person within their psychological, social and spiritual context and not just merely reduce people to disease entities. In reality it is very difficult, perhaps near impossible to protocolise this kind of care effectively. Maybe this is why the LCP failed to deliver good care in the wrong hands. Dying is not and cannot ever be reduced to a tick box exercise. However, I do strongly believe that clinicians need some guidance on the aspects of care to think about when caring for patients at the end of life. I would argue that this should not be too prescriptive in nature, but more a list of these factors to address in order to achieve holistic care.

End of life care does not start in the final hours and days of someone’s life for the vast majority. Recognising this and engaging in good quality Advance Care Planning processes for all patients with terminal illness early on is essential. I believe that this would enable us to smooth the transition into the final days with patients having been truly able to express their wishes when they were well enough to do so. We need to develop usable clinical tools specific to different conditions to accomplish this in practice. 6-12 months to achieve all this seems like a ridiculously ambitious timeframe but I look to the future for my patients and my own care with hope.

3 thoughts on “What is the future of care for the dying?

  1. As someone with a “terminal” condition (PLS) I was also disappointed to hear the vote of no confidence in the LCP, whose failings seemed to be in its administering rather than in its principles. And any guidance / system will inevitably be subject to human error. I think the media is often to blame for dissing what’s good. Is it too much to hope that you, Kate, could be involved in drawing up the new guidelines? You must be uniquely qualified to do so.

  2. Yes.I do fully agree with the path breaking concept of advanced life care pathway.y

  3. In the 1970s, as a qualified nurse, I was privileged to nurse people to death in a hospital staffed by GPs. If we had someone of 90, say, frail but anxious to get home to the cat and the canary, we made sure this happened! If, on the other hand someone much younger, felt it was time to move on, we simply discontinued medical intervention, kept them clean, comforted and pain free with constant monitoring and attention to detail of basic hygiene. We always seemed able to deal with any last requests and I cannot remember a time when there was anxiety or stress from families, or doubt about our care.
    Times have changed, which is sad, but I am hopeful of making headway with family and friends as well as our local community to make it acceptable to discuss the inevitable!
    I have made all provision for my own demise, but am still concerned I may be kept alive against my will, so am tempted to have DO NOT RESUSCITATE tattooed on my chest!

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