Liverpool Care Pathway – The Role Of Value Judgements In Diagnosis And Its Prognosis

Statement proposition:

It really is true to say that the judgement call is always - If this one can be brought back from the brink...
is this one really worth saving?

Conclusion:

This is euthanasia; a judgement call on 'quality of life' has been taken and has been acted upon.

Euthanasia Definitions

• Euthanasia: the intentional killing by act or omission of a dependent human being for his or her alleged benefit. (The key word here is "intentional". If death is not intended, it is not an act of euthanasia) 
• Voluntary euthanasia: When the person who is killed has requested to be killed. 
• Non-voluntary: When the person who is killed made no request and gave no consent. 
• Involuntary euthanasia: When the person who is killed made an expressed wish to the contrary. 
• Assisted suicide: Someone provides an individual with the information, guidance, and means to take his or her own life with the intention that they will be used for this purpose. When it is a doctor who helps another person to kill themselves it is called "physician assisted suicide." 
• Euthanasia By Action: Intentionally causing a person's death by performing an action such as by giving a lethal injection. 
• Euthanasia By Omission: Intentionally causing death by not providing necessary and ordinary (usual and customary) care or food and water. 

What Euthanasia is NOT: There is no euthanasia unless the death is intentionally caused by what was done or not done. Thus, some medical actions that are often labeled "passive euthanasia" are no form of euthanasia, since the intention to take life is lacking. These acts include not commencing treatment that would not provide a benefit to the patient, withdrawing treatment that has been shown to be ineffective, too burdensome or is unwanted, and the giving of high doses of pain-killers that may endanger life, when they have been shown to be necessary. All those are part of good medical practice, endorsed by law, when they are properly carried out.

In a response to Professor Pullicino's paper on the LCP, Dr. Berry states -

"The evidence that does exist in support of the benefit that patients derive from the LCP is not discussed. I think recognition that some evidence exists supporting the LCP would have added balance to this paper (for instance this ‘cluster trial’  - courtesy of Katherine Sleeman, Clinical Lecturer in palliative care, KCL, Cicely Saunders Institute)."

The Study Protocol cited concerns, specifically, diagnosed cancer patients.

In regard to this, Harlow Blogger, a regular commentator on this blog, may like to take note that 'that name' crops up again -

Yes, Massimo Costantini...

Dr. Berry states - 

"If we are regularly making inaccurate predictions (or prognoses), that is of course unacceptable and must be addressed... "

Philip Berry (Back to the source: a response to Patrick Pullicino's Liverpool Care Pathway paper)

And this is what is so problematic: the LCP is being applied to patients upon whom an actual diagnosis of 'dying' has been made. There is not a diagnosis of a condition that is deemed 'terminal', that will bring about an end to life; there is a diagnosis that the demean the patient is presenting is that of one who is approaching death.

This is -

WEDNESDAY, 28 DECEMBER 2011

Liverpool Care Pathway - A Complicity Of Involvement

Action against Medical Accidents

According to several comprehensive studies of the issue, medical errors are far from rare. That is alarming.

But diagnostic errors - a subset of the overall problem - haven't received nearly as much attention as other medical errors.

"Diagnostic error is barely on anybody's radar screen," according to  Dr. Mark Graber, 62, a nephrologist in Long Island, N.Y., and an expert on diagnostic errors. That is a cause for grave concern, grave being the operative word.

Misdiagnosis may result in any one of many outcomes. Misdiagnosing death that results in being placed on the Liverpool Care Pathway will have only one outcome. Clearly, LCP is a one-way ticket on the NHS (National-socialist Health Service) into the next world. Our concern is well-founded!

Action against MedicalAccidents (AvMA – the charity for patient safety & justice) has campaigned for the introduction of a legal duty of candour in healthcare in the UK – the so-called 'Robbie's Law'.

There are laws set in place to protect consumers. Transparency and the free flow of truthful information are key features of such legislation. Say that again: Transparency and the free flow of truthful information are key features of such legislation!

But what of a human life, our very selves, our human flesh and blood, the only thing any of us, each of us, will truly possess throughout our lives, in luxury or in penury? Can this be said enough, that it should have to be said at all, that this is something utterly beyond value, invaluable. To take any stance other than unconditional support for such legislation diminishes human life such that it becomes quite, quite worthless.

The Health Secretary, Mr. Andrew Lansley, has declared himself against this measure. Shame on you Mr. Lansley! Clearly, the opinion of the medical lobby carries great weight at Westminster. Their reluctance to throw out the bad apples is well documented.

The truth is more ugly and more messy than could it ever have been conceived to be.

The fact that the culprits are not served their just deserts bears out what we were told.

The truth is that what goes on – and what has gone on for years – continues to go on.

This is from the AvMA home page:

Action against Medical Accidents (AvMA) is the independent charity which promotes better patient safety and justice for people who have been affected by a medical accident. A 'medical accident' is where avoidable harm has been caused as a result of treatment or failure to treat appropriately. AvMA believes that whatever the cause of a medical accident, the people affected deserve explanations, support, and where appropriate, compensation. Furthermore, we all deserve to know that the necessary steps will be taken to prevent similar accidents being repeated.

But what of diagnostic errors, a subset of the overall problem, and which haven't received nearly as much attention as other medical errors? What is AvMA’s stance on those?

What is AvMA’s stance on the Liverpool Care Pathway? This is problematic. A diagnosis of impending death which then results in death can hardly be said to have been in error or be considered to be a ‘misdiagnosis’. The LCP protocols, however, applied judiciously and to the letter, will guarantee only this one outcome.

Dr. Patrick Pullicino echoes the views of a not insignificant body of medical opinion when he states:

“It is not scientifically possible to diagnose impending death as the LCP purports to do. The LCP is instead an assessment of the perceived quality of life of the patient by the medical team and as such is euthanasia.”

And what is AvMA's position in that regard?

The Liverpool Care Pathway is a legal document established as a legal "therapy". Through the Department of Health CQUIN incentives, it has been made the subject of cost/benefit assessment by health managers and economists. In a cost conscious health service, a short sharp end will be a tempting therapeutic option to £500 per week and more for ‘continuing  care’.

CQUIN is the DOH funding policy. CQUIN has set targets for 2011/2012 with regard to the End of Life LCP program. The forward plan is to increase the number of patients identified to be on the end of life care pathway from a baseline of 0% to 20%; it is further planned to have 30% of all patients who die in hospital dying on the Liverpool Care Pathway.

To ensure they receive their provider income in full, Trusts have to comply with or exceed these goals.

Clearly a misdiagnosis is a medical error and, therefore, is called to the remit of AvMA.  Clearly, this is a connived medical error through the involvement and policy of the DOH.  Can Government Ministers, then, be said to be complicit in it? 

This is -

The State Journal Register

Errors not rare

Medical errors are far from rare, according to several comprehensive studies of the issue.

But diagnostic errors - a subset of the overall problem - haven't received nearly as much attention as other medical errors since the nationwide patient-safety movement began in 1999 with the publication of the landmark Institute of Medicine report, "To Err is Human."

This is the paper by Philip Berry quoted from above. A response by Dr. Rita Pal follows -

Back to the source: a response to Patrick Pullicino's Liverpool Care Pathway paper

General critique

Defining prognosis and prediction is useful, although the difference between  the two may seem rather semantic to many. As I have mentioned already, I am not sure that an analysis of our skill at prognostication is relevent to how we use LCP, the use of which is triggered by signs of possible dying. Nevertheless, if the LCP is perceived to guarantee death, it is very important that we identify dying patients accurately. Is this an achievable aim? Probably not. Should this admission result in abandonment of the LCP? Probably not. No methods of medical assessment, and no therapies, are 100% accurate or successful. As long as patients are reviewed regularly, to ensure comfort and to confirm the impression that the they are in fact dying, we should be able to minimise the risk of erroneous diagnosis while ensuring that the vast majority of patients benefit in terms of comfort.

It is the lack of evidence supporting the exercise of prognostication that drives this paper. The evidence that does exist in support of the benefit that patients derive from the LCP is not discussed. I think recognition that some evidence exists supporting the LCP would have added balance to this paper (for instance this ‘cluster trial’  - courtesy of Katherine Sleeman, Clinical Lecturer in palliative care, KCL, Cicely Saunders Institute).

Another area deserving discussion is that of communication. Prof Pullcino's paper touches on this only briefly, during his description of the man with siezures, and I wonder if a greater focus on family conversations would have increased its relevance in this regard.

My overriding objection to this paper centres on the use of the word euthanasia. It is suggested that widespread use of the LCP equates to institutionalised euthanasia, and implicit in this is an accusation that individual practitioners have killed their patients. To read this, as a doctor who has used the LCP, is very difficult. The accusation is made in the conclusion without any supporting evidence. The ‘evidence’ that is reviewed in the paper does not touch upon intentional killing. If we are regularly making inaccurate predictions (or prognoses), that is of course unacceptable and must be addressed, but the term euthanasia suggests that we are intentionally killing our patients. There is absolutely no evidence for this.

This paper, and the thoughts behind it, sparked a huge controversy over end of life care in this country. I think it is methodologically weak and structurally flawed. I think it contains baseless conclusions, and is excessively liberal with emotive, hurtful accusations of intentional killing.

Response by Dr. Rita Pal -

Rita Pal responded:

This is very well written Dr Berry. I would make the following points though

1. Multiple doctors have made allegations of the misuse of the LCP. Numerous patients with evidence based cases have made such allegations as well. In the face of such allegations, the medical profession cannot neglect their duty to ensure the LCP is better implemented.

2. There is an element of "defensive" writing in the above. You say that you like many doctors are being accused of euthanasia. This is a mistake in your comprehension. The fact is the public are alleging that "some" doctors "may" be misusing the LCP.

3. The paper by Professor Pullicino is by no means perfect. Then which paper is perfect. It does though point to a need for review of the LCP.

4. The most important potential conflict of the paper is the religious aspect. I am not certain why this was not discussed as it ought to have been.

5. You write "If we are regularly making inaccurate predictions (or prognoses), that is of course unacceptable and must be addressed, but the term euthanasia suggests that we are intentionally killing our patients. There is absolutely no evidence for this."

Are you certain of this? If no one has done the studies on involuntary euthanasia, how do we know it is not widespread? You cannot state that " there is absolutely no evidence for this". You can merely state that we have not yet established evidence for this due to lack investigation.

6. You cannot deny that the media provides anecdotal evidence of potential LCP misuse. You cannot simply brush aside the public's evidence as "invalid" because it has not been published in the BMJ or the Lancet or any other leading "medical journal". Please note, that the GMC regularly use the media reports as a basis to prosecute.

7. You implied on Twitter once that LCP was not evidence based medicine :).

8. You also fail to note that there are doctors who may well be discriminatory. Indeed, the reports Death by Indifference and other research point to this. Not everyone has the patient's best interests at heart. If they did, the GMC would be out of business. It is clear, they are not as the complaints appear to be increasing exponentially.

9. The only reason there has been an erosion in the doctor patient relationship is because the profession engages in a paternalistic approach. " Doctor does not know best" by the way. Good clinical care is based on listening to the patient. At present, the profession has adopted an antagonistic stance against vulnerable people who have suffered at the hands of doctors. This lack of sympathy or empathy is not going to achieve a net result. This defensive approach has not worked.

In any event, the medical profession is now adopting an odd position of supporting comfortable deaths as opposed to addressing the concept that there may be misuse or abuse of the LCP. Euthanasia and involuntary euthanasia is unlawful. We currently have no idea how prevalent this is in the NHS. This is the point made by the public.

Overall, I love debating this subject with you. Thankyou for your analysis of it. It was very useful.

With Best Wishes.

Dr Rita Pal
NHS Whistleblower on involuntary euthanasia :).