Sometimes in the NHS you have to have difficult conversations with patients and families – tragically the health service can’t save every patient that comes to its door.
Nurses and doctors are in the frontline of the struggle to save lives, but they can’t win every fight. And the battle, for some patients, can be an unpleasant and pointless trial that only adds to their suffering and lack of dignity.
That was why the Liverpool Care Pathway was created in the 1990s – to give those patients at the end of their life a “good” death.
A death with dignity and without pain or suffering is one of the last gifts the NHS can give many of us.
As a health journalist, I’ve been fascinated by the growing furore over the Liverpool Care Pathway (LCP) in recent weeks; but as someone who had to watch my 84-year-old Nan die while on the LCP seven months ago, I’ve also become increasingly frustrated at the way the pathway has been portrayed.
My nan, Dorothy, lived in Stoke-on-Trent all her life, and after years of ill-health she came to the end of her life in April this year at the University Hospital of North Staffordshire.
She received the very best level of care I could have hoped for and I will always be grateful for the wonderful treatment she received.
The LCP was a crucial part of ensuring my nan kept her dignity right to end, it meant she did not suffer and allowed her to say her final goodbyes.
She knew she was dying and once treatment to try and save her was stopped she became peaceful and contemplative and I remember spending an hour with her alone where we talked for a final time. Looking back now, it was a conversation that was painful but so comforting to have had.
My nan said things to me that will stay with me for the rest of my life and the peace given to her via the LCP made that conversation possible.
Immediately afterwards I was extremely upset and standing in the corridor of the ward I didn’t know what to do or how to react. Which is why I was so grateful that one of the senior nurses, Tracy Mellor, took me to a nearby office made me a cup of tea and talked to me about what was happening.
Her kind words and explanation of what was happening, how my nan would progress and what they would do for her was incredibly important. I cannot praise Tracy and the staff at the University Hospital of North Staffordshire enough.
As a family we were involved in the LCP and DNR decisions, we understood it, we agreed with it and we were willing passengers on my nan’s final journey.
That is the crucial difference between my story and the harrowing examples we have seen reported in the mainstream media.
Had I found out my nan had been put on the LCP and a DNR without my or my family’s knowledge I would have wanted to tear the hospital down brick by brick with my bare hands. I can totally understand the anger families feel in those situations.
And that’s why The Daily Mail and others were right to highlight the cases, but instead of focusing on the behaviours of the staff who got it wrong when they did not involve the patients or families, they instead made the story about the pathway.
The LCP is not the problem, but its implementation, in some cases, is. Those cases are entirely unacceptable and should face the full fury of the media and patients when they happen.
Nurses grappling with life and death issues face incredible pressures; you go into this job to save lives, not to watch them fade away.
One possible reason for the lack of communication with some families could well be a reluctance of some nurses and junior doctors to have those incredibly tough conversations with patients and families.
In my nan’s case we were spoken to by a special palliative care nurse who came to talk with us and removed that burden from the ward nurses and doctors. This could well be a solution going forward.
I particularly remember this palliative nurse for her kindness. Hearing that my nan, who I was incredibly close to, was dying and would not survive was hard. Inevitably I became upset and I will always remember her for the simplest of gestures – putting a hand on my knee as I became upset. She then explained why food and water was not necessary anymore for my nan and took me through the LCP process. Her time, kindness and understanding could do nothing to relieve the shock of my nan’s death, but it meant I was free to concentrate on the important final hours ofher life. It is impossible to express the value of that.
Nurses must realise that communication is as much a part of their job to care for the dying as the administration of drugs.
Accompanying a patient and their family in the final days of death is a privilege nurses need to recognise. As a profession they can make such a difference in those final days.
The good care my nan received will comfort me for many years.
The media may be mistakenly presenting the LCP in an unhelpful and sensationalist way, but it is completely within nurses’ and other health professionals’ power to ensure that the LCP remains and that it is used effectively. Because when that happens, its power to help relatives and the patient can not be overestimated.