Is the Tide Turning in the End-of-Life Care Debate?

In response to my article on the Liverpool Care Pathway published in The Guardian on Tuesday, I received the following message on Twitter:

Your article on the LCP was wonderful. Needed that, have been called a murderer, angel of death, Beverley Allitt today

The message was from a Staff Nurse who works on a cancer ward. Within those deeply upsetting 140 characters is the reason I felt such a stong need to write the article, and why I am so grateful to The Guardian for publishing it. Her words are shocking enough, but what would make them truly tragic is if she, and hundreds of nurses like her on receiving such abuse, look at their slim pay packets at the end of the month and start to wonder if it’s all worth it.

I have never known such anger among health professionals as has been created by the aggressive media attack on end-of-life care. At last doctors have started to find their voice in the last week, and started fighting back. On Sunday, Max Pemberton – resident medical columnist at The Telegraph – painted a picture of the future where doctors and nurses will be frightened to take an active part in a person’s death, and of the increase in suffering that would be the inevitable consequence:

I know what the repercussions of the recent media frenzy will be and, frankly, I dread them.

The wonderful Kate Granger, who as a terminally ill cancer patient and doctor who has cared for many patients as they are dying must surely have more right to have her voice heard than most, wrote a moving blog on the subject the same day. Kate knows that she is on her GP’s ‘End of Life Care Register’, and is glad of it. She is clear about what she wants for her future:

When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well-informed, emotionally supported relatives, making the grieving process that little bit easier.

And on Tuesday, Dr Bee Wee, President for the Association of Palliative Medicine of Great Britain and Ireland, published a very measured analysis of the situation in The Spectator:

This is a good opportunity to step back and look at the care we provide for dying patients, without necessarily defending or attacking the LCP, which is only part of the bigger picture of end of life care.

She is right, of course. The medical profession does need to learn from where the LCP has not been properly implemented, and poor communication with patients and relatives should not be allowed to continue. I am not starry-eyed about my profession – I know that there are doctors who communicate poorly, and others who seem not to care. I also know that the time pressures that come from being over-stretched on hospital wards can put even the most caring doctors and nurses to the test, and that ‘compassion fatigue’ is something encountered with sufficient frequency to be a familiar foe. However, I will not concede that doctors are out to murder their patients, or that young men and women go into a career in nursing in order to cause harm.

The stakes are high in this debate. The attack on doctors and nurses has been directed at both the good and the bad, and the collateral damage will have a profound effect on morale. Trust between doctors and their patients is being seriously undermined, and there is a very great danger that we will throw away many of the great strides forward that have been made in palliative care in this country, to the detriment of the patients of the future. If the tide has turned in the last week towards a more balanced debate in the press this is greatly to be welcomed. We can only hope that it is not too late, and that the politicians and policy-makers are still listening.

End of Life Care Pathway – Giving the Time to Choose What Matters

The Daily Mail reporter Steve Doughty has written no fewer than 8 articles since the beginning of October attacking End of Life Care planning and the Liverpool Care Pathway. Two of the more inflammatory examples can be found here and here, and the latest post has been published today.

Karen Jones has written this Guest Post as a response to those articles. Karen is one of the GPs at Binscombe and is the lead in the practice for Palliative Care. She also works for The Beacon Centre as a GP with a Special Interest in Palliative Care, and was the lead GP when we started working with Christopher’s Children’s Hospice, part of Shooting Star Chase.

Here is her post:

We are always told that there are only two certainties in life: Dying and paying tax. Nowadays, the latter seems to be a matter of contention, but we are certainly all going to die. It was with great sadness that I read the recent articles on the End of Life Care Pathway – as doctors, once again, were slated for trying to do the right thing. This is not a new initiative. The Gold Standards Framework has been used by GPs as a framework to identify and improve the care of patients for several years now. It has been, I would say, revolutionary in the way we approach and manage the care of our dying patients in terms of planning and co-ordination.

I have often thought ‘what constitutes a good death?’ For me personally I would like time to say goodbye to my loved ones; I would want to have my affairs in order and feel that I had prepared my husband and children for life without me. I would prefer to be at home at the end but know that sometimes this is not achievable, and I would definitely want my symptoms to be as well controlled as possible, by a knowledgeable and caring team who had time for me and my carers. A tall ask I know, but I think this is what we should all want for ourselves and our relatives, and it is what, as a health team, we try to deliver. We can’t always achieve this but we should aim for high standards.

So how is this achievable? Well, really by preparation – and this is the point of End of Life Care registers. It is only by trying to identify patients who seem to be approaching the last year of their lives that doctors and other members of the team can start to explore peoples’ wishes. We, of course, cannot predict precisely when people are going to die, but only a few of the deaths in our practice are completely unexpected. We know that a quarter of the deaths each year are from cancer. The rest are usually in frail elderly patients or people with long term conditions who have been slowly getting worse. These people, I think, get a raw deal because of the variable nature and progress of their conditions. We are often anxious about initiating discussions about end of life care in case we upset them. The End of Life care register is a way to highlight these patients and encourage us to do this. And yes we do need to be sensitive and have excellent communication skills and it can be very daunting for us, but we all need to start trying to talk about death so that we can express our wishes. We are not talking about withdrawing ‘life saving’ treatment – indeed people sometimes choose to have all treatment possible right to the end – but others get tired of numerous hospital admissions and are ready to say ‘that’s enough’ and we need to be able to support them and plan for this. The alternatives to planning and making our wishes known are the risk of uncoordinated care out of hours; emergency admissions which are distressing for patients; relatives and staff who don’t know patients’ real wishes; and more deaths in hospital, which is fine if this is where patients want to be at the end of their lives, but not if they don’t.

Palliative care is about helping people live well until they die, but we all need to be honest with each other so that people can prepare for this. As a doctor I feel really privileged to have been able to help people achieve a peaceful death in their preferred place of care, and I believe that any initiatives that help us plan and prepare for this, including End of Life Care registers should be encouraged.

Dying

 

 

 

 

 

 

 

 

 

 

 

 

Lutz-R. Frank via Compfight

It would be great to hear what other people think about this important issue. If you have any views on Karen’s post, or the articles in The Daily Mail please consider leaving a comment. Thank you.