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

They need your consent. To get your consent, they have to get you to pint-size your care expectations and see the glass half empty.



With a literature review published on PMC, this is The British Journal of General Practice –

Heart failure is an unpredictable, progressive, and incurable condition. Around 1 million UK citizens1 and 5 million US citizens are estimated to be living with heart failure: 1% of the general population and 15% of those aged over 80 years. Heart failure is a leading cause of hospital admissions, and a substantial drain on healthcare resources: it is mentioned on one in eight US death certificates.

A “leading cause of hospital admissions...”

A “substantial drain on healthcare resources...”

Already, the mindset is cost, not care.

The prognosis associated with a diagnosis of heart failure is poor, worse than for many cancers; 38% of patients are dead within 1 year of diagnosis and 60% within 5 years. Around 50% of deaths are sudden, especially in the less severe stages, from arrythmias or ischaemic events; many of these patients are reported to have had a good quality of life in the month before death.

The prognosis is “worse than for many cancers”.

But it is the interpretation of data which determines perception...

62% of patients actually survive longer than one year; 40% survive longer than 5 years. 50% of deaths are not sudden.

Clearly perceptions are being pint-sized to confine expectations to finite horizons of care.

There was early recognition that reduction of hospital admissions is key to cost-cutting...

Community-based heart failure nurses have been in place since 2003: their focus is primarily on optimising medical management and admission reduction

This precedes introduction of the EoLC Strategy.

Clinicians often have a treatment imperative that makes it difficult for them to face the limitations of modern medicine and introduce EOLC issues. Prediction of the time of death is almost impossible, confounding even the best prognostic models: in one study more than half of those who died within 3 days had been estimated to have a prognosis of over 6 months. Patients may have been close to death on several occasions, and seek hope through a positive reconstruction of the threat to life.

“Prediction of the time of death is almost impossible, confounding even the best prognostic models”

The EoLC Strategy recognises that pint-sizing care expectations is key to cost-cutting...

The first step of the 2008 NHS EOLC strategy ‘End of life care pathway’ is entitled ‘Discussions as the end of life approaches’.

The EoLC Strategy...

calls for ‘a significant culture shift within the public and the NHS’

The...

literature reveals that many ‘EOLC conversations’ are largely limited to advanced directive paperwork and choices for resuscitation rather than communication about goals and future care options. There is a low level of agreement between doctors and patients, and doctors and family members, as to whether EOLC conversations have taken place at all, and discrepancy between these groups regarding their perception of the amount of information exchanged; this raises questions concerning the reliability of clinician reports and the adequacy of the form and content in which clinicians discuss EOLC.

There is always the assumption that what can be done will be done. You don’t just throw in the towel.

Every day is a bonus and to be able to squeeze another day out of the toothpaste tube is always a plus. You just stay positive.

Recent years have seen dramatic therapeutic advances in the management of heart failure that have significantly improved patients' survival and quality of life

However...

As EOLC comes to the fore across the NHS, there is a growing tension between active management and the need to communicate an uncertain and poor prognosis: a double message that is difficult for clinicians to communicate and for patients to receive.

Pint-sizing care expectations has become imperative to successful implementation of EoLC.

Doctors tend to focus on current aspects of medical management rather than the future, approaching heart failure as a problem to be fixed instead of a terminal illness; this may hinder communication concerning wider and longer-term patient needs. They fear alarming patients unnecessarily, creating anxiety and depression, destroying hope, and causing patients to give up the fight for life. Doctors tend to focus on current aspects of medical management rather than the future, approaching heart failure as a problem to be fixed instead of a terminal illness; this may hinder communication concerning wider and longer-term patient needs. They fear alarming patients unnecessarily, creating anxiety and depression, destroying hope, and causing patients to give up the fight for life.

The Macmillan-funded study concludes...

Conclusion
Heart failure patients need clinicians to be sensitive to their individual wishes for EOLC conversations, which change as events and time unfolds. Clinicians who tend to avoid such difficult conversations need to learn to pick up the cues that the patient would like to talk further. Those who view open awareness as the best way to prepare for the EOL need to live with the internal tensions created when patients are reluctant to discuss this. A dual approach of continuing active treatment while acknowledging the possibility of death, at least to ourselves, is perhaps the way forward: ‘hoping for the best but preparing for the worst’.

The researchers agree that those discussions are all-important. Stephen Barclay is a leading researcher in this study.

Dr. Barclay leads the CLAHRC End of Life Care Research Group, which is based in the Institute of Public Health and is a member of the General Practice Research Unit.

Stephen Barclay was involved in the development of the Share my Care EoLC register. We have seen these registers spread and multiply. They have been called Death Lists.

Further reading -

Liverpool Care Pathway - There Are Always Consequences

Liverpool Care Pathway - The State Rules, Okay?

A culture-shift has taken place in the NHS across all levels, from GP Practice to hospital ward. Call it what you will, this is social engineering...

Liverpool Care Pathway - Nudge, Nudge, Say No More...

In November 2012, Mail Online reported -

The Health Secretary has acted after the Mail highlighted chilling cases in which patients were placed on the Liverpool Care Pathway – which involves withdrawal of fluids and food – without their relatives’ knowledge.

On Monday he will announce rule changes that will see end-of-life care included for the first time in the NHS Constitution.

The document lays down principles that all doctors must follow.

Last night Mr Hunt said he would enshrine the ‘basic right’ of patients to be involved in decisions when they are mortally sick.

He threatened ‘tough consequences’ for hospitals that fail to consult.

Patients and their families will be able to sue health trusts that break the rules and doctors who ignore their wishes face being struck off for misconduct.

Mr Hunt said he would enshrine the ‘basic right’ of patients to be involved in decisions when they are mortally sick.

Let’s say that again...

Mr Hunt said he would enshrine the ‘basic right’ of patients to be involved in decisions when they are mortally sick.

The Neuberger Review focussed on this, also –

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.

Well, they had to say that to cover themselves against pre-V12 litigation but it does negate Mr. Hunt's stated assurances.

They do own up that...

The LCP documentation is deficient in making distinct and clear where the need for consent and explanation exist.

And that is quite alarming!

This is what NHS Choices has to say –

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.

There does appear to be a fundamental principal of understanding that patients should have a right of say in the course of their treatment. That this should need to be a point of discussion at all is alarming; it should be a no-brainer!

In June, Lord Dyson ruled in the High Court that...

" there should be a presumption in favour of patient involvement."

and -

“doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them”.

Further reading -

Liverpool Care Pathway - A New Hope...?

Liverpool Care Pathway - So Readily Do Perceptions Change...

On the day they decided to put her down, May was alert enough to respond indignantly to the doctor who hauled her about to examine her: “What are you doing?”

If May was in pain at that time, she would have moaned, groaned; she would not have responded in the manner she did.

The doctor ignored May’s remonstration and turned to address those members of the family present that he would get May an x-ray. The doctor went off.

He returned to say that he had consulted with his LCP team. The EoLC Nurses had already primed the family and they readily agreed for May to go on the LCP.

Minus one.

One of May’s daughters had stood her ground through and through and had warned of the LCP. She had been dismissed.

But wait...

May had capacity. The hospital readily admits to this. Did she not have a say in her care?

Read further here...

Liverpool care Pathway - A True Story

Liverpool Care Pathway - Responses Will Be Answered 

Liverpool care Pathway - A True Story Supplemental

The case is clear...

Patients and their families will be able to sue health trusts that break the rules and doctors who ignore their wishes face being struck off for misconduct.

How can this be then that, after all the uproar, furore and publicity, law firms have not heard of the LCP?

Small-time ambulance-chasers perhaps, but Senior Associates at high-profile law firms ...?

Hmmm.

In June of last year, the NHS Litigation Authority, working with the Department of Health, appointed a new £400m legal advice panel of solicitors to provide legal services to 15 DoH organisations over the next four years.

Well then, what chance do we stand anyway to bring  a case when those paid by the public, working for the public and, therefore, with a duty to the public commit grave error against the public and then use those funds provided them by the public to pay lawyers to refute these charges the public have made against them?

They and their establishment cronies have literally got away with murder.

I rest my case.

Additional reading -

Liverpool Care Pathway - Culpable But Not Answerable