The Liverpool Care Pathway controversy
Nov. 6th, 2012 07:10 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
livEverybody already agrees that the Daily Mail is a terrible newspaper, and Melanie Phillips is a terrible journalist. However, her recent article about the Liverpool Care Pathway hits a new low of deeply, deeply irresponsible journalism with very real social effects. I'm not going to link to the article, but the title pretty much says it all:
As a result of this lazy, ignorant, misleading article, there has been considerable discussion of the issues of end-of-life care. I started discussing it on Twitter with![[twitter.com profile]](https://p.dreamwidth.org/e0caa790ec10/-/twitter.com/favicon.ico)
nanayasleeps, and realized that what I wanted to say about it doesn't really fit on Twitter. nanayasleeps linked to Tom Chivers' response to Phillips excrementally awful article, which is reasonable enough in itself, but people seem to be interpreting it as contributing to a debate about the decision to cease life-prolonging medical interventions. That's not actually what the Liverpool Care Pathway is about.
First of all, Phillips is purely, factually wrong. The Liverpool Care Pathway is not and never has been about the decision to withdraw treatment. It's not about making the decision of who is "worth" saving. It is, and I quote from the official documentation:
Now, some people may feel as a matter of principle that doctors should always try to prolong their patients' lives at any cost (whether financial cost or cost to the patient). That's fair enough, but there's no point getting angry with the Liverpool Care Pathway if you hold that view. Some people kind of object to the idea of having systematic Care Pathways at all, they believe that each individual doctor should make all decisions using their own personal judgement and experience, rather than following national guidelines. That's... certainly not the currently fashionable view in the English medical profession, but one can make a reasonable argument for it. But I would argue that it's not particularly worse to have guidelines for the treatment of imminently dying patients than for dealing with any other frequently occurring medical issue.
If you want to know what the Liverpool Care Pathway is actually about, and what it instructs healthcare professionals to do, the Marie Curie Palliative Care Institute has comprehensive documentation. The great majority of it is publicly accessible; I suppose we couldn't expect a tabloid hack like Phillips to have done five minutes of research before writing her ignorant screed, but if you want to form an opinion about the LCP, you might as well be properly informed. Likewise, if you want to know how doctors are currently advised to make decisions about when a patient should be deemed to be dying, and when they should cease trying to extend someone's life, you can read the publicly available guidelines from the General Medical Council.
Is the system as implemented by the NHS perfect? Of course not; apart from anything else there really is no broad consensus about what state of affairs the NHS should be aiming for. I know many of my friends are more pro-euthanasia / medically assisted dying than I am. Anyway, there is an important difference (not just philosophical hair-splitting) between empowering doctors to hasten or even directly effect someone's death, and empowering doctors to cease life-prolonging treatments. I think you have to be pretty extreme to argue that doctors should always try all possible treatments, however unlikely to succeed, though that is a position I can respect to an extent.
One very fraught part of the discussion is whether nutrition and hydration count as "treatment" or as "palliative". I mean, certainly not feeding and hydrating someone is extremely likely to lead to them dying sooner, and it's a very distressing thing to think about you or someone you care about being allowed to die of thirst. On the other hand, for many dying patients feeding and hydration really are quite aggressive and unpleasant interventions, especially if they can't eat for themselves. At the moment I can't find any good publicly accessible discussions of this issue, but in any case the current guidelines, Liverpool and other, all state that decisions about assisted feeding have to be made on a case-by-case basis, there's no overarching rule about whether they're included in withdrawing treatment.
It's a very understandable fear that this kind of decision is going to be made on a resource or financial or judgement of the patient's "worth" basis. There is no doubt that this goes on to some extent. Right now in the NHS as it is today, I personally am convinced that the driving force between determining that someone is dying is not about saving money on expensive treatments, it's about sparing patients from having to undergo painful procedures for the sake of a slim chance of giving them a few more hours of life. But don't just take my word for it, you need to judge for yourself whether you think that principle is being sufficiently honoured. However the fact that guidelines exist for how to make someone's final hours dignified and minimally distressing is really not the problem here.
Politically, I'm seeing echoes of Sarah Palin's ignorant, manipulative "death panels" nonsense from a couple of years ago. I'm fairly sure that it's part of a wider attempt to discredit the NHS, frankly. I mean, if you really believe that a private health insurance policy would entail absolutely no expense or effort being spared to prolong your life for as long as possible, you're sadly naive. That's just not how health insurance works, especially since the last part of a person's life is the most expensive anyway, and since the very great majority of insurance customers are going to be under medical care when they die, so to implement that utopian reality, insurance companies would have to be committing themselves to spending almost unlimitedly large sums of money on very nearly everybody, which is just not how insurance risks work. I also think it would be a good idea to ask yourself whether completely unlimited invasive treatment is really what you want at the end of your life, but in any case that's not part of the political issue of how healthcare is funded.
So there you go; no matter what your moral views are on this extremely delicate issue, it's got to be better to have the facts available rather than horrible, utterly misleading scaremongering.
No Care Pathway – killing people doctors deem worthless
As a result of this lazy, ignorant, misleading article, there has been considerable discussion of the issues of end-of-life care. I started discussing it on Twitter with
First of all, Phillips is purely, factually wrong. The Liverpool Care Pathway is not and never has been about the decision to withdraw treatment. It's not about making the decision of who is "worth" saving. It is, and I quote from the official documentation:
used when the multi-disciplinary team has agreed that the patient is dying and all reversible causes for the current situation have been considered. There is no decision involved about who should be treated and who should be kept comfortable and allowed to reach the end of their life. It's just a set of guidelines for what medical professionals should do after they have already made the decision to withdraw treatment.
Now, some people may feel as a matter of principle that doctors should always try to prolong their patients' lives at any cost (whether financial cost or cost to the patient). That's fair enough, but there's no point getting angry with the Liverpool Care Pathway if you hold that view. Some people kind of object to the idea of having systematic Care Pathways at all, they believe that each individual doctor should make all decisions using their own personal judgement and experience, rather than following national guidelines. That's... certainly not the currently fashionable view in the English medical profession, but one can make a reasonable argument for it. But I would argue that it's not particularly worse to have guidelines for the treatment of imminently dying patients than for dealing with any other frequently occurring medical issue.
If you want to know what the Liverpool Care Pathway is actually about, and what it instructs healthcare professionals to do, the Marie Curie Palliative Care Institute has comprehensive documentation. The great majority of it is publicly accessible; I suppose we couldn't expect a tabloid hack like Phillips to have done five minutes of research before writing her ignorant screed, but if you want to form an opinion about the LCP, you might as well be properly informed. Likewise, if you want to know how doctors are currently advised to make decisions about when a patient should be deemed to be dying, and when they should cease trying to extend someone's life, you can read the publicly available guidelines from the General Medical Council.
Is the system as implemented by the NHS perfect? Of course not; apart from anything else there really is no broad consensus about what state of affairs the NHS should be aiming for. I know many of my friends are more pro-euthanasia / medically assisted dying than I am. Anyway, there is an important difference (not just philosophical hair-splitting) between empowering doctors to hasten or even directly effect someone's death, and empowering doctors to cease life-prolonging treatments. I think you have to be pretty extreme to argue that doctors should always try all possible treatments, however unlikely to succeed, though that is a position I can respect to an extent.
One very fraught part of the discussion is whether nutrition and hydration count as "treatment" or as "palliative". I mean, certainly not feeding and hydrating someone is extremely likely to lead to them dying sooner, and it's a very distressing thing to think about you or someone you care about being allowed to die of thirst. On the other hand, for many dying patients feeding and hydration really are quite aggressive and unpleasant interventions, especially if they can't eat for themselves. At the moment I can't find any good publicly accessible discussions of this issue, but in any case the current guidelines, Liverpool and other, all state that decisions about assisted feeding have to be made on a case-by-case basis, there's no overarching rule about whether they're included in withdrawing treatment.
It's a very understandable fear that this kind of decision is going to be made on a resource or financial or judgement of the patient's "worth" basis. There is no doubt that this goes on to some extent. Right now in the NHS as it is today, I personally am convinced that the driving force between determining that someone is dying is not about saving money on expensive treatments, it's about sparing patients from having to undergo painful procedures for the sake of a slim chance of giving them a few more hours of life. But don't just take my word for it, you need to judge for yourself whether you think that principle is being sufficiently honoured. However the fact that guidelines exist for how to make someone's final hours dignified and minimally distressing is really not the problem here.
Politically, I'm seeing echoes of Sarah Palin's ignorant, manipulative "death panels" nonsense from a couple of years ago. I'm fairly sure that it's part of a wider attempt to discredit the NHS, frankly. I mean, if you really believe that a private health insurance policy would entail absolutely no expense or effort being spared to prolong your life for as long as possible, you're sadly naive. That's just not how health insurance works, especially since the last part of a person's life is the most expensive anyway, and since the very great majority of insurance customers are going to be under medical care when they die, so to implement that utopian reality, insurance companies would have to be committing themselves to spending almost unlimitedly large sums of money on very nearly everybody, which is just not how insurance risks work. I also think it would be a good idea to ask yourself whether completely unlimited invasive treatment is really what you want at the end of your life, but in any case that's not part of the political issue of how healthcare is funded.
So there you go; no matter what your moral views are on this extremely delicate issue, it's got to be better to have the facts available rather than horrible, utterly misleading scaremongering.
(no subject)
Date: 2012-11-06 10:44 pm (UTC)LCP
Date: 2012-11-19 12:05 pm (UTC)LCP
Date: 2012-11-19 03:32 pm (UTC)My admittedly superficial analysis, based on reading some of the many harrowing reports, is that clinicians are NOT talking (or not talking honestly) to relatives or patients, that decisions are often hasty, that nurses are not fully trained in the Pathway, and that unnecessary suffering is being caused.
My solution would be simple: any decision to put a patient onto the Pathway must be signed off by two medics, one of whom must be a consultant, BOTH of whom have seen the patient AND have discussed the matter & gained consent from the family within the previous 24 hours. They should have also undergone specialist refreshment training in this area, as part of their revalidation process. All nurses on duty must have displayed qualifications to signify they have attended an intensive course on nursing a patient on such a Care Pathway, and this should be part of Mandatory Training, & be an annual event. I would agree that hydration is not always best for the patient at the end - but I'm sure the many supporters of LCP would not wish their loved ones to die with sticky & cracked lips, desperate for just a little water to moisten the mouth. I've yet to hear of anyone moments before death desperate for a pint of water...
We all seek a 'kindly' death: but it's not possible for all of us, unless we go down the 'little last pill' road - which the medical profession & the law won't let us. Therein lies the challenge for medics, nurses - and the rest of us.
Re: LCP
Date: 2012-11-22 11:50 am (UTC)Looking at evidence doesn't just mean believing stories of bad treatment of the dying, though. Evidence would be, for example, measuring whether relatives are more likely to be dissatisfied if the patient died while on the LCP compared to dying while doctors were trying to save them. Nobody wants to see their relative die, so it's almost inevitable that there's going to be a lot of unhappiness. Is the Care Pathway to blame? Maybe, but "some people are unhappy" isn't evidence either way. I'm not denying evidence, and nor is anyone else coming from the medical side of the discussion.
Another area of confusion is that some people have objections to the fact of making a decision to withdraw treatment. But this is not caused by the LCP! Having guidelines for what to do to give someone the best possible palliative care is not the problem, the problem is that the decision is sometimes made inappropriately. (For some people, such a decision is always inappropriate, because they always want doctors to try everything they can to save someone.) In your case, you think there should be stricter procedures and safeguards around making such a decision, which is fair enough, but attacking the LCP is not going to help with that.
Similarly with hydration; the LCP does not say that dying patients should be refused hydration. It says the decision should be made on a case-by-case basis, whether it's helping the patient to drink, IV fluids, or as you suggest moistening the patient's mouth. So if your problem is with patients being allowed to die thirsty, the LCP is not to blame.
You think that medical professionals should have more training in end of life care and the LCP. I'm pretty sure that nurses and doctors are in fact already covering this as part of their training. It may be that more or better training would help, I'm not one to argue against that. But you can't just take this issue in isolation; would more training in palliative care for dying patients displace other important aspects of medical training? Would it take time and resource away from actually caring for patients? Would it add to the burden of bureaucracy without any real benefit in terms of patients suffering less? It's just not as "simple" as you're making it sound, though you may well be right.
There's no such thing as a magic death pill. Not just because the law forbids it, but because biological reality forbids it. Dying is always going to be unpleasant. Whatever your position on assisted dying / euthanasia, reality is reality.
As for my ad hominem argument against Phillips, well. I wasn't saying that Melanie Phillips is a bigoted hack, and Melanie Phillips dislikes the LCP, therefore the LCP is obviously good. That would be a fallacious argument. I was saying that it is morally irresponsible to publish an ill-researched, factually inaccurate article which is likely to panic readers into thinking that doctors are trying to kill them. And Melanie Phillips' has a history of publishing dangerously misleading articles to suit her political ends, so that makes it more plausible that this article is similarly a complete fabrication. I have then gone on to provide examples, which readers may judge for themselves, showing the inaccuracies in Phillips' article. So it's not an ad hominem fallacy; Phillips' dishonesty is directly relevant to why you should not take her description seriously.