Liverpool Care Pathway - Jane's Story

We continue to struggle, for struggle we must, for justice, even in the face of adversity.




Two years ago it is and May’s daughter continues her fight.

Pertinent reading -

Liverpool Care Pathway - A True Story

Liverpool Care Pathway - Responses Will Be Answered

Liverpool Care Pathway - A True Story Supplemental 

As if this has not been enough to contend with, Jane has had her own personal struggle, first with CLL and now with a Meningioma.

Liverpool Care Pathway - A True Story: The Next Generation

The PHSO first said that an investigator could not be allocated because of the inundation of the work load.

The PHSO next demanded that the Trust be given one last chance to provide an acceptable response.

The PHSO then went dark for five months and did not reply to any and every request and inquiry.

The PHSO have at last sent their decision letter.

The PHSO have relied upon the testament of their clinical adviser whom they describe as "a physician and geriatrician with over 20 years’ experience".

An LCP apologist.

The PHSO has conceded in its investigation that May had capacity to make a judgement upon whether treatments should or should not proceed.

Then the Team diagnosed 'dying' and May was taken out of the loop. The appropriately groomed family were involved and the LCP went ahead.

Jane has responded to the PHSO Investigator in this manner:

Thankyou for your long-awaited response.

Before proceeding with my reply, I will make the following observations:

·         I note that you speak in the past tense that the LCP ‘was’…

Actually, the LCP continues in use but in other guises. Last year, Janet Snell @Janet_Snell was tweeting on Twitter and reporting in the Nursing Standard in her capacity as Acting Deputy Editor that "Most acute hospitals are still using the Liverpool Care Pathway."

At Wirral, for example, they are using the Wirral End of Life Care Plan and Wirral Integrated End of Life Pathway. The Control Record actually states that this is just a name change. This is available online. I reproduce a copy here – 

·      You state that you have consulted with a clinical adviser, a physician and geriatrician with over 20 years’ experience. That is not necessarily a recommendation of impartial judgement. There is a great divide of informed opinion in regard to end-of-life pathways. I am not privy to whom you have consulted nor do you reveal this information to me. I will cite as follows:

Professor Pullicino -

Predicting death in a time frame of three to four days, or even at any other specific time, is not possible scientifically. This determination in the LCP leads to a self-fulfilling prophecy. The personal views of the physician or other medical team members of perceived quality of life or low likelihood of a good outcome are probably central in putting a patient on the LCP.

There is no data for telling if someone is in the last hours or days of life, so the actual decision is not a scientific one. The actual decision is an intuition by the group that's making the decision. If you start to say somebody has a poor prognosis, then you make a self-fulfilling prophecy.

Dr, Philip Howard –

Patients are put on the LCP by multi-disciplinary teams rather than by physicians. This indicates management decisions supplanted medical judgements. It is a decision with an end in view. The patient is dying. Why? Because we say they are dying. Why? Because we have decided.

On the wards there has been a change in attitudes with the introduction of terminal care pathways, the most familiar of which is the Liverpool Care Pathway (LCP).

We know that prognosis is not accurate and we often get our predictions of prognosis wrong. A tool based upon prognosis is therefore dangerous as it may become a decision that a person will die. Often on such pathways triple therapy is used (with morphine, midazolam a sedative and a hyoscine which is a drug to dry secretions). This means that the patient, who may or may not be dying, is given drugs that may hasten or even cause death. This is particularly true if hydration is also withdrawn. On such a regime the patient cannot survive.

On The Big Question –

I think one of the problems with the Liverpool Care Pathway is it’s predicated on a false premise, namely that you can accurately diagnose death; you can make an accurate prognosis as to when that person is going to die, within the next few hours or days. And there’s no scientific evidence that we can do that. And I know of no calibration tools that we can use to say just how accurately we can make that prognosis. That’s the danger. Now, if you then sedate the patient, stop observations, stop interventions, and stop food and fluids, the patient must die. Whether or not they would have died anyway, they must die if you adopt that regime in full.

John Smeaton –

Doctors are being pressurized to participate in the LCP even when they feel very uncomfortable about it, being told that the LCP is national policy. Some doctors are losing control of the clinical care of their own patients.

The prognosis of imminent death may well be a self-fulfilling prophecy. The LCP's combination of narcotics and dehydration is ultimately lethal. In many cases it appears that there is a deliberate intention of hastening death

The LCP is usually applied without the knowledge or consent of the patient. The lack of assessment of mental capacity of patients and the lawful obtaining of informed consent are serious concerns.

You describe your clinical adviser as a physician and geriatrician with over 20 years’ experience. As an LCP apologist, they will have likely used and recommended use of Version 11 LCP.

Version 11 LCP was illegal* in that it did not require informed consent; the Review did not review Version 11 but focussed on the legal Version 12 which superceded it.

Significantly, Version 11 did continue in use in Northern Devon into 2013. A report to the Trust Board dated 26 November 2013 stated:

Item 138/13 – There has been a Devon-wide agreement to proceed with the Liverpool Care Pathway Version 12 as this helps staff and supports the training programme to provide palliative care.

Your clinical adviser, a physician and geriatrician with over 20 years’ experience and an LCP apologist, therefore engaged in criminal activity if they put in place and promoted use of Version 11 LCP.

Reply

My discussion of events leading up to the implementation of the LCP is documented and has been submitted to you. This aside, the issue does remain that the law and the Version 12 LCP does require informed consent by the patient and this did not proceed.

Discussion with the family and the multi-disciplinary team should only have proceeded in the event that my mum was not competent to make this decision herself. As I have reported to you, on the very day that implementation proceeded, capacity was demonstrated when my mum remonstrated with the examining physician not to manhandle her in the manner that he did.

You state at item 12. that the family had agreed but the decision of the patient should have taken precedent. That decision was not sought and no test of competency was made as is required.

When mum declined intervention previously in regard to the treatment offered, that decision was respected. Why, then, in the respect of intervention via the LCP, was her decision not sought likewise?

You speak of ‘best interests’ but ‘best interest’ would have required the intervention she had declined. That could not proceed, obviously, because, without her permission, that would have amounted to an assault.

Therefore, in not seeking her permission to do so and making no test of competency to give her permission to do so, enacting the LCP and putting my mum on a syringe driver for 18 hours also amounted to an assault. 

_______________________________________________________

* The LCP v.11 contained no provisions for either consent or a test of competency to give consent. This DoH-promoted care pathway was therefore incompatible with UK statute, and its use UNLAWFUL across the NHS from Oct. 1st, 2007 - implementation date for LCP v.12 in 2010.

I do seek and expect the Trust to make formal apology for this assault on the person of my mother,

My dear mum did have capacity to be asked and she was not asked for her permission to proceed with what the Trust has described as a “treatment decision”.

According to Lord Dyson, “there should be a presumption in favour of patient involvement” and medical staff have a legal duty to consult and involve patients in decisions. Doctors act unlawfully in failing to do so.

Yours sincerely,

Amongst evidence provided to the Investigator is this from NHS Choices –

Consent to treatment is the principle that a person must give their permission before they receive any type of medical treatment or examination. This must be done on the basis of a preliminary explanation by a clinician.

Consent is required from a patient regardless of the intervention – from a physical examination to organ donation. 

The principle of consent is an important part of medical ethics and the international human rights law.

This is plain and clear. Consent to treatment must be sought and given.

Legal advice has been sought.

Ambulance-chasers are not interested.

Those solicitors who speak honestly will say that May's life was worthless. To pursue a case for damages, the best you may hope for is compensation in recompense for funeral expenses. 

To pursue a case for justice, you will be up against a medical establishment able to call on the full resources of the NHS Litigation Authority to fund their defence and to summon all and sundry medical witnesses to speak in their cause.

You will be in the dock to fund and prove your case.

They have only to sit back in bemused self-satisfaction and watch.

Further reading -

Liverpool Care Pathway - On Pint-sizing Perceptions of Care And The Betrayal Of Trust