Caring for a dying relativeI've only supported one person through a terminal illness at close quarters. It was bloody awful. Of course it was. The diagnosis was bad enough. As death approached, everything got very scary and distressing. What helped us was professionals around explaining what was happening, why a particular symptom was getting worse and how we could deal with it. In the final 3 weeks, we developed a close relationship with the doctors, nurses and carers and we trusted them.
Often a lot of what happened was more distressing to us than it was for the person who was dying. We tried to have a rule that went "if it doesn't bother her, it doesn't bother us". It was useful to have that in our heads, even if it didn't always work. There were times, though, when it did bother her and as she became weaker, those became more frequent. Looking back, and comparing with what happens now, I know that she could have been spared some suffering if she'd been put under the sort of sedation you get now during her final hours, if she'd been able to decide that the time was right for that, or if she wasn't capable of that, we could have done decided that with her doctors. She could then have had a much more comfortable passing. It might have been quicker, but kinder. If death is imminently inevitable, surely comfort at the end is the most important thing? It's the compassionate approach.
My relative wasn't in a hospice. She was cared for and died at home, but we were lucky enough to have pretty good palliative care. That wasn't the case for others, who died in much more distressing circumstances, without their pain or discomfort being properly addressed. They were not as comfortable as they could be. That's why, essentially, the Liverpool Care Pathway was developed - to get the best of hospice-standard care out there into hospitals and the community. My worry is that if barriers are put in the way of implementing the LCP, or confidence in it is undermined wrongly, then people will suffer in the horrible way they used to. That would be very wrong.
Irresponsible scaremongeringThe Daily Mail would have us believe that the Liverpool Care Pathway was almost an instrument of eugenics, used by the NHS to despatch people who weren't ready to die. I have no medical training, fair enough, but I know enough about the Daily Mail to be able to confidently assert that this is irresponsible, scaremongering nonsense.
What's my evidence for this? Well, let's go and have a look at what the Liverpool Care Pathway actually is. This is the leaflet designed by the people who developed it for relatives and carers. It makes clear that families should be involved and care plans discussed with them at all times. If that's not happening in any NHS setting, then that needs to be addressed, but part of the pathway involves explanation and consultation. End of.
There are also stories in the press that people have recovered when they have been taken off the pathway after relatives protested. Well, part of the LCP process is to keep reviewing any decisions made by keeping an eye on the patient and seeing how they respond. I've spoken to nurses about this, the sort of nurses I would happily trust with my life, and they tell me that if the withdrawal of fluid is causing distress to the patient, they give them fluids. These people, who I'd trust with my life, think that the LCP is a really useful tool in avoiding suffering.
A decision to withdraw fluids is bound to be hard for relatives to take. It seems quite counter-intuitive, but there are occasions when administering fluids can make it physically worse for the dying person.
It stands to reason that if the family has confidence in the medical team, then they are more likely to take their advice. It's so important that discussions are conducted with sensitivity and care so that relatives can understand the reasons why the doctors have reached the conclusions they have reached. In turn, the staff also need to keep listening to the family because often they don't have the time to keep a close eye on people, and their families can stay with them and observe any changes.
The Telegraph reports today, under a sinister sounding headline "Liverpool Care Pathway: Minister orders report into cash rewards" that Liberal Democrat health minister Norman Lamb has ordered an enquiry into payments made to NHS trusts linked to targets for LCP use. However sinister the headline sounds, Norman Lamb's comments should reassure:
You could say that given that the care pathway involves patient discussion and engagement with loved ones, done properly, getting more people on to an approach which guides the clinicians through proper judgment, if that ends up with people having a better experience than a more haphazard approach then that’s a good thing.
But I want to know that payments are only being made where objectively and rationally we can conclude that it is resulting in a better outcome.The same paper has an article by Max Pemberton who outlined his fears if LCP use is curtailed:
The media furore has been fuelled, in no small part, by religious groups ideologically opposed to medicine’s interference in the process of dying. But their intervention will make doctors and nurses less confident in actively managing death and more reticent about using the LCP, with more people suffering as a result.
In future, doctors who use a palliative care pathway will be more wary of deviating from it because they will feel more secure and protected by adhering to policy. But this will mean less responsiveness to a patient’s changing circumstances.
The LCP was an attempt to ensure access to a dignified, painless and comfortable death. My grandmother was put on it last year and died shortly afterwards. It was a peaceful death and I couldn’t have asked for anything better. She had been haunted by watching her mother die of throat cancer in agony, confused and fighting for breath, and it was a relief to be able to reassure her that this wouldn’t happen to her.I was also drawn to something on Twitter by a Doctor who outlined what could happen if there was no family to consult about putting someone on the Liverpool Care Pathway.
Of course, by the time you get to a Judge, the patient might have died a much more distressing death than necessary.
We need to talk about dying more
Part of the reason the Daily Mail is able to scare us all is because we tend not to talk about dying. It's one of the last taboo. If we've cared for a relative as they have died, we don't discuss how it happened. We spare people's feelings with a simple "it was very peaceful" even if it wasn't really. We maybe don't want to relive it either, which is entirely understandable.
That means, though, that there's not much in the way of shared knowledge and understanding available to people. They don't necessarily know what to expect when they or someone they love is dying. The Liverpool Care Pathway people have another leaflet which gives some information.
I would never recommend using the Daily Mail, or any other newspaper, as reference material on anything. However, those nice people at Dignity in Dying have produced a fairly comprehensive document outlining all the issues, telling people about their rights.
Finally, the NHS Choices website looks behind the headlines on the LCP.
The right wing press might want to scare people into thinking that their beloved NHS is trying to save money by getting people to die before their time and without their family's knowledge and consent. What an insult to the doctors and nurses for whom such action would be a violation of all their professional ethics.
I hope that the Government doesn't make any changes which would make it more difficult to give dying patients the most comfortable passage out of life on the basis of a few indiscriminate and irresponsible scare stories. If there have been individual failures of care, then those responsible need to be accountable for that, but let's be careful not to over-react. Any decisions made must, for the sake of patients, be evidence-based.