Some thoughts on dying, end of life care and the Liverpool Care Pathway

There's been a lot of controversy about end-of-life care, and particularly the use of the Liverpool Care Pathway, over the past few days. So much so that it seems that the Government is about to change NHS procedures on this. I'm not sure that's even necessary, as consulting relatives is already part of what the Liverpool Care Pathway entails. I'm concerned that this may be an over-reaction to scare stories in the press and that reassurance rather than actual change is necessary.

Caring for a dying relative

I'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 scaremongering

The 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. 

SNP MP Wishart's Twitter tirade against Moore and Swinson

One of the problems faced by the SNP is the army of so called cybernats who spew nasty, insulting bile across the internet at anyone who dares to question SNP policy or independence - which, of course, are one and the same thing. Alan Cochrane from the Telegraph wrote earlier this year about these toxic, often anonymous individuals.

Those who cannot take part in this great debate without questioning the patriotism, and often the parentage, of those who don't agree with them are much more accurately described as Cyberscum. As such they are, of course, a legitimate target for those who hope that the debate over the SNP's plans to break-up Britain can be conducted in a reasonably decent fashion.

Willie Rennie challenged the SNP leadership to deal with these people in his keynote speech to the Scottish Liberal Democrat conference.

If they are not careful they will cause Scotland to become a divided country, setting Scot against Scot for a generation.My message to the SNP is simple: please don’t question my loyalty to my nation just because I don’t agree with your policy. It’s not all of those in the nationalist camp. There are many sincere, generous, liberal-minded people in the SNP. But it is their behind-the-scenes stalkers and abusers who need to be tackled. The SNP leadership needs to rein them in, to tackle the abuse, to overcome the division-creators. Their leaders need to act. And act now.

You would think, then, knowing the problems that they have with loose cannon online, that SNP parliamentarians would be extra careful to be positive at all times. They would take care not to fire cheap, gratuitous insults around.

Sure they would. Just like MP Pete Wishart did last night while speculating on the reshuffle.

And when I challenged him for being nasty:

I can't find that tweet on his timeline this morning so it appears he thought better of it.

Now, maybe, if he was in the House of Commons cafeteria indulging in some full fat Irn Bru and suffering the effects of sugar high, we might find it within our hearts to forgive a momentary indiscretion.

Except this is the way he does business. Last week he put out an extraordinary press release, accusing Michael Moore of attention seeking behaviour and making a pointless speech. All Moore was doing was talking in his usual ultra reasonable tone about how important it was to reach agreement on the process for the independence referendum - and expressing confidence that he and the SNP Government would do so - by the end of October. For his pains, he attracted this tirade via the SNP press office:

The only reason for Michael Moore’s speech is that he is desperately trying to get noticed and save his job in the reshuffle – it was pointless otherwise.....
...These cost increases show that the £8 million Scotland Office is simply a propaganda arm for Westminster to use in their Tory-led anti-independence campaign. It has no other role, and Michael Moore’s recent pronouncements are just indicative of an attention-seeking exercise with a UK Cabinet reshuffle in the offing.

So, will Alex Salmond rebuke his MP for such a tirade? I won't be holding my breath.

Twisted by the Telegraph: Miriam Gonzalez Durantez

There are many good reasons I'd never buy the Telegraph. First there was the way it made incorrect insinuations about people I care about during the MPs' expenses scandal.

Then there was the not very small manner of sending undercover reporters to Lib Dem ministers' surgeries which led to a complaint to the Press Complaints Commission being upheld:

The Commission considered that there was an important dislocation here between the prima facie evidence and the method used to test it. It was notable, for example, that the newspaper was relying upon off-the-record comments from Conservative ministers on the subject of the Coalition to justify covert recordings of Liberal Democrats on the same subject. Those Ministers were being asked, in theCommission’s view, to comment on a series of policy issues with the evident intent of establishing on which subject they might say something newsworthy.Certainly, the level of subterfuge was – contrary to the newspaper’s assertion – high. The Commission wished to make it clear that recording individuals using clandestine listening devices without their knowledge was particularly serious and intrusive, requiring a strong public interest defence. Secretly recording a public servant pursuing legitimate public business was without question a serious matter.On this occasion, the Commission was not convinced that the public interest was such as to justify proportionately this level of subterfuge. 

So their journalistic practice has been found wanting for me on too many occasions now, but it's those little poisonous touches they add in whenever they write about Nick Clegg and his family that really make me mad.

Today, the paper reports, not even on a story of its own making, but on an interview Miriam Gonzalez Durantez, Nick's wife, gave to Grazia magazine. I shall nip out and buy it later because it looks interesting. I think what's really clear from the interview is that the three Clegg children grow up in a house where both parents bend over backwards to put them first, making sure that the family spends time together and that there's always a parent on hand at those crucial times of day. But what's the first line of the Telegraph's report?

The Deputy Prime Minister’s wife, Miriam Gonzalez Durantez, has painted a chaotic picture of life at home.

The basis for this is that Nick apparently sometimes nips home after attending early morning meetings to do the school run.

Frankly, if that's chaos, bring it on! There should be more of it about.

One of the things I really love about Miriam is the way she lets rip when confronted with chauvinistic insinuations that she should be some kind of Stepford Wife whose sole function is to support her husband. Asked about how the family coped with the pressure of Nick's job, she replied in her customary forthright manner:

“I always get very surprised when I’m asked this question because, you know, I have three children, I have a busy career and I have a very busy husband. Yet my husband has three children, he has a much busier career than I have, and he has a busy wife.“Nobody would ask him how he balances everything. For some reason there is a kind of assumption in your question that it is my role to balance it,” 

 I am doubly grateful to her - firstly, by blowing this sort of sexist rubbish out of the water so eloquently, and secondly for providing the sort of equal partnership, real life environment all male politicians should live in, she makes life a bit better for women everywhere.

The snidiness of the Telegraph's report does it no credit - but it's no surprise. In the related stories at the bottom of the article, there's one about Nick Clegg not being a member of his local tennis club.   The reason for that is that he's not applied to join. Yet the paper devotes several paragraphs to a total non story, even resorting to quoting the club's head coach from 10 years ago.

There was no mention at all of Nick ever asking for his kids to join this club, yet there's a lengthy quote from this coach in which he, shall we say, conveys the idea that children are as welcome on the courts as rats are in my bed.

I suppose I'd worry the day that the Telegraph wrote something nice about Nick or his family, but the quality of their reporting is sub-tabloid in standard - a shame for a paper with such an illustrious history going back more than 150 years.

Vince Cable, devious journalists and stating the obvious

So, that's how it's going to be, is it? The confidentiality of the MP's surgery breached by a couple of journalists wired up with a concealed microphone. 

I always thought that it was illegal to record a conversation without the other person's knowledge and consent. That's why, when you phone the tax credits office, or your insurance company, or your bank, they tell you that your conversation may be recorded. If the Telegraph hasn't broken the law, they've certainly been sneaky, devious, discourteous and lazy. I find it interesting that they've released the audio of Vince, but not of these women telling lies.

If papers go to this length, how long is it going to be before they try to get reporters into private family occasions, maybe posing as friends, or even people who date their kids?

In a week when we've lost two journalists, Brian Hanrahan and Anthony Howard, who displayed integrity and wisdom throughout their careers, and who genuinely illuminated our lives, it's difficult to associate the profession they practiced with what passes for journalism these days.

In terms of what Vince actually said, I guess most people will read it and think that it's pretty much fair comment, that this is what they expect life to be like in a coalition. There's no nasty, bitter or personal tone, to it. In fact, the two Conservatives who are mentioned by name are spoken of in good terms.

There's no doubting that Vince has had some of the biggest battles to fight in his ministerial role. The furore over tuition fees alone would be enough to exhaust anyone. While I have my own difficulties with the system that's emerged, there is no doubt that it's the fairest option that was available and will actually cost graduates less than the current system. And if you stay on a low income throughout your career, your tuition will effectively be mostly free. Vince made sure of that in a way that wouldn't have happened had Labour or the Tories been governing alone.

In addition to that, he's also had the effects of the Tories' ill thought out immigration cap to deal with. He's been honest all along about how he feels about that.  I am fairly certain that every single Liberal Democrat will have smirked with pleasure when the Court Judgement ruling the temporary cap illegal came out last week. That's an issue which isn't over yet.

It's patently obvious that there are going to be policy divisions between the Conservatives and the Liberal Democrats governing together and Government ministers have never tried to hide it. There's no doubt that they have managed to forge a professional working relationship and there's been a fair amount of give and take on both sides. It wasn't a Tory idea to raise the tax threshold, taking nearly a million people out of tax altogether and the NHS reforms and free schools weren't Lib Dem ideas and we're going to feel less comfortable with them.

I reckon that this Government is probably a great deal more functional and grown up than any Government in the last 30 years. We had Thatcher ruling with a rod of iron, then Major's government being ripped apart on Europe and the pure venom and internecine bile that marked much of Labour's time in office.

All these recordings have done is to confirm that Liberal Democrat ministers are fighting hard to introduce Liberal Democrat policies within the coalition. I'm glad to hear it. I had enough faith in our people to think that anyway, even if I can't agree with the final outcomes on some issues.

I found Vince's comments about Howard Flight particularly interesting. This is the guy who Cameron's appointed to the Lords who's had a series of controversies, most recently when he spoke about Child Benefit changes being disincentive to the middle classes to breed. The guy is clearly the sort of Tory prat who treats the Daily Mail as if it's Holy Writ and is a walking cocktail of ill-informed prejudices.

Vince said of him:

 Howard Flight is actually a very nice guy, I know him well, but he is very, kind of, crass. They sacked him in the middle of the 2005 election, because he blurted something out that he wasn’t supposed to say. Howard sacked him, but you know, he is a nice but rather silly public school boy with a few prejudices to boot. But we don’t control their appointments, so they don’t control ours. That’s the basis.

Vince shows the maturity of seeing the person beyond the daft ideas and I respect him for that. I've had friends, or close relatives who have views that to me are eye-wateringly scary. My lovely Great Aunt Vera was one such. She had some pretty right wing views, but when it came down to it, when her great niece ran off with a divorced man twice her age, she welcomed him and was absolutely tolerant. Her son, at her funeral, who's of a similar leftie bent to me, spoke so lovingly of her and said that while they'd disagreed about issues, those arguments were always worth having.

Secret recordings are supposed to shock, but what the Telegraph has done is to confirm the good things about Vince, that he's a good MP who's prepared to be open and honest with his constituents. Much of what he said was a complete statement of the obvious. We'll see what else comes out, but I suspect they'll have played their trump card early on.

I hope that revelations like this will not lead to politicians being more careful about what they say in private situations. Most people don't record conversations and it would be a shame if Government ministers started to talk in Government press-release speak all the time.