Liverpool Care Pathway - A Serious Breach Of Trust

If we cannot trust those we entrust to represent us to deal with us fairly and honestly and not hide behind masks of honesty...


Then what does that say?

The Review says:

EVIDENCE

A rapid evidence review of integrated care ‘pathways’ for end of life showed there are specific gaps in evidence on the LCP, not least that independent, prospective testing of the LCP has not yet been carried out after nearly 10 years of its dissemination. Fully independent assessments of end of life care in England are required, focusing on the outcomes and experience of care, as reported by patients, their relatives and carers, as well as the quality of dying. Further research into the biology and experience of dying is needed.

The Review then revisits and reviews itself, restating:

1.23 Formal, independent, prospective testing of the LCP has not yet been carried out after nearly 10 years of its dissemination, which is a major cause for concern. The National Care of the Dying Audit – Hospitals (NCADH)24 does provide some limited evaluation of the LCP.

1.24 In view of this lack of evidence on the LCP and end of life care more generally, the Review panel recommends that the CQC and the Health Quality Improvement Partnership (HQIP), should conduct fully independent assessments of the roles of the healthcare professions in end of life care in England. Rather than focusing on process, they should focus on the outcomes and experience of care, as reported by patients, their relatives and carers, as well as the quality of dying.

That is to say, in effect, that the LCP in all its various forms has, for the past 10 years, been little more than a clinical trial and that The National Care of the Dying Audit was based on a clinical trial - which is all version 11 was, in any case!

As for PROMs (patient reported outcome measures), well, in the case of a Death Pathway that might prove rather difficult because the patient will, most likely, be dead.

The Review says:

Consent

One of the central issues causing difficulty in the use of the LCP seems to be misunderstanding and uncertainty over whether deciding to implement the LCP is a treatment decision, requiring the patient’s consent or requiring the decision to be taken in the patient’s best interests if they lack capacity. In some cases, relatives and carers incorrectly consider they are entitled to decide whatever treatment their relatives receive, and in others clinicians fail to seek consent from a patient or consult the relatives and carers in a ‘best interests’ assessment when treatment is being changed.

The LCP is not a single, simple medical procedure, and so there is no legal requirement for consent to be sought before it is used. Some aspects of the LCP do not concern treatment, but others, such as medication changes, do. Patients, relatives and carers are always entitled to explanations of how decisions have been made and a chance to understand them, but all too often they have not been afforded that opportunity. The LCP documentation is deficient in making distinct and clear where the need for consent and explanation exist.

The Review then revisits and reviews itself, restating:

From the submissions of evidence that the Review panel has received, it is clear that one of the central issues causing difficulty seems to be some misunderstanding and uncertainty over whether deciding to implement the LCP is a treatment decision that requires the patient’s consent (if the person has capacity) or requires the decision to be taken in the patient’s best interests (if the person lacks capacity). In some cases, relatives and carers incorrectly consider they are entitled to decide what treatment their relatives receive, and in others clinicians fail to seek consent or consult the relatives and carers in a‘best interests’ assessment when they should.

This review says less than it should have but, perhaps, more than was intended:

1.45 The LCP is not a single, simple medical procedure, and there is no legal requirement for consent to be sought before it is commenced. Some aspects of the LCP, for example making sure that the GP practice is notified that the patient is dying, do not concern treatment, and so do not require patient consent or the application of the MCA to determine what is in the patient’s best interests. 

1.46 On the other hand, for aspects of the LCP that do involve medical treatment – for example, starting, continuing or stopping the use of strong analgesia or sedation, artificial nutrition or hydration – discussion and consent will be appropriate. But, while any planned treatment requires consent or a best interests assessment, no clinician can be compelled to act against their patient’s best interests. 

1.47 The Review panel concluded that the LCP document is deficient in making the distinction between treatment and non-treatment (to seek consent and/or to explain one’s actions). The document should be clear about when consent or a decision taken under the MCA is required. This should be clearly set out in the information sheet for relatives, in the algorithm and under each of the relevant goals in sections 1 and 2, as a prompt to the lead doctor.

Informing the GP is protocol but everything you do to a patient is treatment. Well, of course it is.

The LCP is a course of treatment - and non-treatment.

More Care, Less Pathway, all cop-out. Consent has to be obtained. That's why it was always emphasised that the LCP is a document, a protocol. They had to say that.

The Review is actually saying that aspects of the LCP do concern treatment and therefore require consent.
Version 11 did not require consent and was trialled until post 2009.

The Review now indicates that, in effect, the LCP in all its various forms has, for the past 10 years, been little more than a clinical trial.

Human clinical experiments are covered by the Nuremburg Code and the LCP is clearly in breach.

Article 1 states:

1. The voluntary consent of the human subject is absolutely essential.

This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.

The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.

Speciality Training Curriculum for Palliative Medicine actually advises, however, that valid consent

is a process that may culminate in, but is not limited to, the completion of a consent form.

and to

Where appropriate, safely prescribe drugs beyond their product licence, or without a product licence, ensuring correct procedures are followed including gaining appropriate patient consent.

Of course! After a shot of midazolam, the patient will pretty much agree to anything...!

The GMC Guidance clearly states:

Patients who have capacity (that is, who can understand, believe, retain and weigh the necessary information) can make their own decisions to refuse treatment, even if those decisions appear irrational to the doctor or may place the patient’s health or their life at risk.

The clinical team make a diagnosis of dying. Does not the patient and/or the patient's relatives have the right to refuse and to seek a second opinion? 

This is a matter that the review fails to address: the vast number of patients placed on this Death Pathway who have not been dying and have been consigned to an early grave.

Other articles are clearly breached:

8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.

According to pjonline -

Strong painkillers or sedatives were often used as a "chemical cosh" for dying patients which reduced their desire or ability to take food and drink, according to relatives who gave evidence to the independent review of the Liverpool Care Pathway (LCP).

There were "too many cases" where opiate painkillers and tranquillizers were used "inappropriately" as soon as the LPC — the commonly used blueprint for palliative care — was introduced for a dying patient, the review panel said in its report published on Monday (15 July 2013).

Drugs were given "in too strong a dose" as a matter of course, rather than to control symptoms, as soon as the patient was put on the pathway. They were often administered by "continuous subcutaneous infusion" which meant the patient became too confused or drowsy to ask for water or to communicate with relatives.

The Review admits:

1.49 There were many stories of relatives and carers being handed a leaflet with ‘Liverpool Care Pathway’ on the cover, without any explanation. A common theme among respondents was that they were simply not told that their loved one was dying; this clearly contributed to a failure to understand that the patient was dying, compounded their distress and subsequently their grief, after what they perceived to have been a sudden death. It appears in these cases that a conversation with relatives or carers to explain the diagnosis or prognosis had simply not taken place, or that doctors had used euphemisms such as “making comfortable”. In other cases, discussions about the fact that the patient was regarded as dying took place hurriedly, and inappropriately, in corridors or while standing slightly away from the bedside.

According to legal compensation expert Philip Needham of Bradford, the NHS is unlikely to face big financial claims from relatives of those who died prematurely due to abuse of the Liverpool Care Pathway.

“This situation falls under the Fatal Accidents Act in which a dependent relative would only ever be entitled to a maximum payout of £5,000,” Mr Needham said.

“And the relative has to prove they were financially dependent on the old people, therefore the numbers involved will be very small.” [- Telegraph and Argus]

Compensation...?

What about justice?

This is far more serious...

Can this truly be?

For the past 10 years, a clinical trial called the LCP - which is all version 11 was, in any case - has been rolled out across the NHS. This has been a human experiment on a mass scale, conducted by ignorant and inexperienced persons not at all 'scientifically qualified'.

This has to be a clear breach of the NUREMBERG CODE.

The Nuremberg Code

1. The voluntary consent of the human subject is absolutely essential.
This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.
2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature.
3. The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment.
4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
5. No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects.
6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment.
7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.
8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment.
9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
10. During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill, and careful judgment required of him, that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.