Saturday, 27 July 2013

Liverpool Care Pathway - The Steps Into That Darkness Are Always Gradual, But Ever Certain

On gameboard or battlefield it is the skilled tactician who will concede the position to gain the field. The fight is not won; it is only just begun.

Opcare9, a pan-European research collaboration, received a 2.25 million euro contribution from the EU –
The main thrust of collaboration has, to date, been around the translation of the LCP into different languages and for use in different healthcare cultures. Undertaking such work has illustrated a need to understand more about the final days of life from a patient, carer and healthcare perspective in a variety of healthcare settings, in a variety of healthcare cultures.

Chairman Ellershaw spoke at the Opcare9 event. The LCP illuminati were present.

Professor Sir Howard Newby, Vice Chancellor of the University of Liverpool, said -
"OPCARE9 is about knowledge transfer - not just from the laboratory to the bedside but from one country to another.  It is vital that we continue to share our experience and expertise among European colleagues & further afield".
Following the review, where does Opcare9 stand now?

The Independent reported that the government is to "test 'end-of-life' protocols for the terminally ill after complaints from relatives".

The Independent article disclosed for public scrutiny what we already knew to be the case -
  • The Liverpool Care Pathway (LCP) has never been subjected to a proper randomised clinical trial.
  • The LCP has never been properly tested. 
  • Despite verified and verifiable and valid complaints that the LCP is a death machine - including that of a sitting member of the 'review' - the LCP has continued in use across the UK instead of being suspended - grounded - to await outcome of the 'review'. 
  • The LCP has been widely adopted throughout the world in various forms (including a 'tweaked' version in Gibraltar).

It is perfectly logical that Belgium should be the choice and Flander's killing wards the place for this study to take place. There is, after all, a history of co-operation and collaboration -

Give something a familiar and friendly handle and, already, it is halfway to being accepted. Thus, the UNBIASED study published in March 2011 -
This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands designed to explore these issues. The UNBIASED study is part of the European Association for Palliative Care Research Network [34]. The study design has been scientifically peer reviewed as part of the grant application process by the Economic and Social Research Council (UK); Fund for Scientific Research (Belgium), the Netherlands Organisation for Scientific Research and the Netherlands Organisation for Health Research and Development.
Aims of the study
• To explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice.
• To understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process.
Study settingsThe study settings include hospitals, expert palliative care units and the domestic home.

DesignThe UNBIASED study has two phases: an exploratory phase (1) and a case study phase (2). 
The threats to the successful conduct of this study relate mainly to the differing ethical review frameworks and procedures encountered in each country. We have had to make significant adjustments to the study design (especially in terms of ways of accessing deceased patients' clinical records) to comply with the strict yet somewhat different demands imposed by ethical and governance review committees in the three national contexts. These procedures specifically apply to researchers not employed as members of the clinical teams responsible for providing care to patients included in the study. This risks imposing additional costs on each national project and has created a delay in terms of commencement of fieldwork; fortunately this has been a similar experience in each country. They also introduce a possibility of bias, because the myriad of individual requirements imposed by different institutional review bodies. Considerable and continuing efforts are therefore necessary to ensure comparability of the national studies, as the study teams seek to comply with local and national requirements in the conduct of their projects.

We hope that others will be able to use this protocol to replicate the study, with necessary local adaptations, to enable further comparisons.
These are case studies taking place in the UK, Netherlands and Belgium. These are case studies of continuous sedation until death.

This study is published on BMC.

Further Reading -

The study is also published on PubMed. This follows in abstract -

The practice of continuous deep sedation until death in Flanders (Belgium), the Netherlands, and the U.K.: a comparative study.


End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium.



Existing empirical evidence shows that continuous deep sedation until death is given in about 15% of all deaths in Flanders, Belgium (BE), 8% in The Netherlands (NL), and 17% in the U.K.


This study compares characteristics of continuous deep sedation to explain these varying frequencies.


In Flanders, BE (2007) and NL (2005), death certificate studies were conducted. Questionnaires about continuous deep sedation and other decisions were sent to the certifying physicians of each death from a stratified sample (Flanders, BE: n=6927; NL: n=6860). In the U.K. in 2007-2008, questionnaires were sent to 8857 randomly sampled physicians asking them about the last death attended.


The total number of deaths studied was 11,704 of which 1517 involved continuous deep sedation. In Dutch hospitals, continuous deep sedation was significantly less often provided (11%) compared with hospitals in Flanders, BE (20%) and the U.K. (17%). In U.K. home settings, continuous deep sedation was more common (19%) than in Flanders, BE (10%) or NL (8%). In NL in both settings, continuous deep sedation more often involved benzodiazepines and lasted less than 24 hours. Physicians in Flanders combined continuous deep sedation with a decision to provide physician-assisted death more often. Overall, men, younger patients, and patients with malignancies were more likely to receive continuous deep sedation, although this was not always significant within each country.


Differences in the prevalence of continuous deep sedation appear to reflect complex legal, cultural, and organizational factors more than differences in patients' characteristics or clinical profiles. Further in-depth studies should explore whether these differences also reflect differences between countries in the quality of end-of-life care.
Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

[PubMed - indexed for MEDLINE]

Publication Types

The study concludes -
Differences in the prevalence of continuous deep sedation appear to reflect complex legal, cultural, and organizational factors more than differences in patients' characteristics or clinical profiles.
The Steps Into That Darkness Are Always Gradual

According to the University of Southampton –
Across Europe, the law surrounding end of life care has developed in significantly different ways.

For example, euthanasia (at someone's competent request) is now legally permissible in the Netherlands and in Belgium, but illegal, although subject to fierce debate and a review in the UK. 
Continuous sedation until death is being increasingly used in place of euthanasia in Flanders. Dr. Judith Rietjens says:
The use of continuous deep sedation may in some situations be a relevant alternative to the use of euthanasia for patients.
The study concludes, practitioners confirm and the statistics demonstrate that the use of continuous sedation until death has less to do with the patient's actual condition and that other factors are playing a role in the decision to embark on this course of action.

...But Ever Certain

Continuous sedation until death (also known as terminal sedation or palliative sedation) appears to be becoming an increasingly common practice. The practice is guided however, by "complex legal, cultural and organisational factors".

Sedation does produce a sense of external calm, changes hyperalert to hypoalert delerium and, since most sedation is terminal sedation, prevents patients complaining about their intractable symptoms.     - Davis MP 2009 
Continuous sedation until death is a process of imposing a 'subjective death' in which it is not possible to determine actual pain relief. The withholding of nutrition and hydration will also hasten death.

In actuality, are symptoms relieved or are relatives, onlookers, merely given that impression? The patient is unconscious in appearance, undergoing what is apparently a painless 'natural' death. There is the perception that it may be functionally equivalent to euthanasia.
Continuous sedation until death (sometimes referred to as terminal sedation or palliative sedation) is an increasingly common practice in end-of-life care. However, it raises numerous medical, ethical, emotional and legal concerns, such as the reducing or removing of consciousness (and thus potentially causing 'subjective death'), the withholding of artificial nutrition and hydration, the proportionality of the sedation to the symptoms, its adequacy in actually relieving symptoms rather than simply giving onlookers the impression that the patient is undergoing a painless 'natural' death, and the perception that it may be functionally equivalent to euthanasia. This book brings together contributions from clinicians, ethicists, lawyers and social scientists, and discusses guidelines as well as clinical, emotional and legal aspects of the practice. The chapters shine a critical spotlight on areas of concern and on the validity of the justifications given for the practice, including in particular the doctrine of double effect.Continuous Sedation at the End of Life - review
Can someone please explain to me how the LCP, designed to cause death in a day or two by suppressing protective reflexes, is morally different from infusing a larger dose of sedatives designed to bring about the same end and for the same reasons in an hour or two?     -  Colin Brewer 
“Many are then put on continuous sedation so they die free of pain”

“But sedation can often mask signs of improvement, meaning doctors may be closing the door on people who would otherwise live for months”

“There is a general assumption that sedation relieves symptoms such as anxiety, delirium and pain, yet there is no published evidence to show this”
Killing with kindness? (Opioids and sedative drugs at the end of life)

Further reading -

Liverpool Care Pathway - The Dangers Which Lurk

Liverpool Care Pathway - Over Here, Over There, And Coming Your Way Soon

Liverpool Care Pathway - The Case To Answer

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