Sunday, 14 April 2013

Liverpool Care Pathway - The Side Effects

The social architects are hard at work behind the scenes. To what end, we may only surmise...

Sometimes, it is just a matter of joining up the dots.

FP7 is the EU Seventh Framework Programme. This 9 July 2012 release announces a €8.1 billion investment in research and innovation to create growth and jobs -

OPCARE9 has been the beneficiary of an EU 7th Framework Collaboration & Support Action grant.

The Faculty of Health and Medicine at Lancaster University reports the following -

Observatory News

New EUFP7 research grant for the Observatory

Framework Programme 7 logo
Framework Programme 7
Professor Sheila Payne, Dr Nancy Preston and Anthony Greenwood (DHR) from the International Observatory on End of Life Care, are part of a consortium which has been awarded European Commission funding (Euros 2,911.593) under the Framework Programme 7. &lquo;InSup-C: Patient-centered integrated palliative care in advanced cancer and chronic disease» aims to investigate the use of integrated care pathways in 6 European countries and make recommendations for their effectiveness to improve palliative care in cancer and chronic disease. The consortium involves 11 partners from 8 European countries and the USA, representing a number of disciplines and professions, and includes the World Health Organisation. InSup-C was launched on the 1st November 2012 and will run for four years.
Updated: 19 December 2012

This has enabled Professor Payne to make visits far and wide, to China and Poland. The Professor was also "thrilled", as here reported -

The Observatory endorses Melbourne Australia's Centre for Palliative Care publication

Clinical Guidelines booklet cover
Professor Sheila Payne, Director of the International Observatory on End of Life Care, was thrilled to endorse the Centre for Palliative Care, Melbourne, clinical guidelines, "Clinical Practice Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients", published in 2011.
Developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia, the guidelines may also prove valuable for the international palliative care community and for generalist health care providers who may occasionally care for palliative care patients and is available for download. Click this link to obtain a copy.
Updated: 25 April 2012

Some further items mentioned in Observatory News:
Observatory team members meet with other EU project members to discuss the Access to Opioid Medications in Europe (ATOME) EU-funded project.

A new book - a 'topical and timely text'- discusses palliative and end of life care for children and young people.

The International Observatory on End of Life Care (IOELC) supports the Morphine Manifesto. The Morphine Manifesto calls for affordable access to immediate release oral morphine.

What we do

We are the UK's largest organisation for funding research on economic and social issues. We support independent, high quality research which has an impact on business, the public sector and the third sector. At any one time we support over 4,000 researchers and postgraduate students in academic institutions and independent research institutes.
What we offer

We offer:
  • Quality: All ESRC research awards are made in open competition, subject to transparent peer assessment at the outset and evaluation on completion. Rigorous standards are applied to all the training we support. Our research often involves multidisciplinary teams, collaboration with other councils, and frequently takes a long-term view. Our datasets, longitudinal and panel studies are internationally acclaimed resources.
  • Impact: Our research makes a difference: it shapes public policies and makes businesses, voluntary bodies and other organisations more effective as well as shaping wider society. Our knowledge exchange schemes are carefully devised to maximise the economic and social impacts of the research that we fund.
  • Independence: Although publicly funded, our Royal Charter emphasises the importance of independence and impartial research. We have no 'in-house' researchers, but distribute funds to academics in universities and other institutes throughout the UK.

Our mission

Our role is to:
  • promote and support, by any means, high-quality basic, strategic and applied research and related postgraduate training in the social sciences
  • advance knowledge and provide trained social scientists who meet the needs of users and beneficiaries, thereby contributing to the economic competitiveness of the UK, the effectiveness of public services and policy, and the quality of life
  • provide advice on, disseminate knowledge of and promote public understanding of, the social sciences.


We are committed to supporting the very best research, with scientific excellence the primary criterion for funding. All our funding opportunities are highly competitive and only those proposals judged by experts in the field to be of the highest scientific quality are supported.

International leadership

We are an international leader within the social sciences. We foster international collaboration with a wide range of international partners and, through joint schemes, we enable UK social scientists to collaborate on challenging global issues with the very best international researchers from around the world.

Our history

We began in 1965 as the Social Science Research Council, founded under a Royal Charter. Our early structure consisted of social science committees that covered 14 disciplines, ranging from anthropology to statistics.

In 1982 the Rothschild review recommended greater focus on empirical research and research related to public concerns. From 1983 we became the Economic and Social Research Council. Our new structure consisted of committees that addressed six areas: economic affairs, education and human development, environment and planning, government and law, industry and employment, and social affairs.
The quality and success of postgraduate training became a major issue during the 1980s. In 1989 we introduced formal postgraduate training guidelines.

During the 1990s, we developed our thematic priorities to focus research on scientific and national priorities. These were later replaced and our priorities were defined in an extensive strategic review that was carried out in 2005. Our current strategic priorities were introduced in 2011.
For a detailed account of the ESRC's first 40 years see SSRC and ESRC: the first forty years (PDF, 892Kb).

ESRC's Royal Charter

We were granted Royal Charter in 1965 as the Social Science Research Council. Since then the charter has been amended three times, in 1973, in 1983 when the Social Science Research Council became the Economic and Social Research Council, and finally in 1994.

What is social science?

Social science is, in its broadest sense, the study of society and the manner in which people behave and influence the world around us.
Some social scientists argue that no single definition can cover such a broad range of academic disciplines. Instead they simply define the social sciences by listing the subjects they include.

Social science disciplines

The main social science disciplines include:
  • anthropology
  • communication
  • criminology
  • cultural studies
  • economics
  • human geography
  • linguistics
  • law
  • political science
  • psychology
  • sociology
  • development studies
Each of these social science subjects uses a range of approaches to study society, including surveys, questionnaires, interviews and statistics. Like all sciences, social sciences evolve through the interplay of the ideas and theories of academics and the evidence that supports or refutes them.

How social science shapes our lives

Social scientists influence our lives usually without us being aware they are doing so. For example:
  • the role of governments in an increasingly market-based society has been determined by famous thinkers such as John Maynard Keynes and Karl Popper
  • it was an economist who came up with the idea of the National Health Service
  • the payment of billions of pounds of state benefits for the needy has been influenced by the work of social scientists.
Social science research findings continue to provide invaluable information whether you are a parent, a local councillor, a police officer, or a business executive.

The social architects are ever hard at work behind the scenes, manipulating and moulding. Society is but putty in their hands. When the ESRC makes funding available it is understood that it is toward matters of some considerable import.

The Economic and Social Research Council (ESRC) discusses the European Union's Seventh Framework Programme (FP7) -
European Research Council
The European Research Council (ERC) is an important pillar of the Seventh Framework Programme, giving primacy to scientific excellence in researcher-initiated proposals. The ERC's aims are to enhance the "dynamism, creativity and excellence" of European research at the frontier of knowledge in all scientific and technological fields.
The ERC has an overall budget of about €7.5 billion over seven years, building up from a relatively low level in the first year. 
The ESRC has been funding research into 'terminal sedation until death' at Southampton University. Professor Sheila Payne is a member of the study group.

The Research Project discusses -

...the differences and similarities between 'continuous deep sedation until death' and euthanasia. 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. There are some figures from research which suggest that the use of 'continuous deep sedation until death' may be used as a 'substitute' for euthanasia in some cases

This study aims firstly, to study how the technology of continuous sedation until death has been reported in the clinical and bio-ethical literature since the Second World War and how it relates to wider debates in Northern Europe about euthanasia and other ethical issues in end of life decision making, and secondly, to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, experiences of clinical staff and decedents' companions of its use and their perceptions of its contribution to the management of death.

The study comprises two part. Part 1 includes firstly, a review of two bodies of literature: i) clinical research and practice; ii) ethical, social science and philosophical, and secondly, a secondary analysis of an existing data set comprising surveys completed by 3,733 UK medical practitioners about their end of life practices (Seale). Part 2 involves a series of 30 case studies using qualitative methods to interview staff and relatives most closely involved in the care of decedents who received continuous sedation until death at home, in hospital or in hospices and a review of existing policies and guidelines about the practice. We will look at each decedent's notes to understand how the practice was used and described. Up to 90 interviews will be completed, although each case will vary in terms of completeness. Interviews with the bereaved person will take place at least three months after the death and will involve a sensitively drafted letter of invitation from the physician sent on our behalf. Data collection will take place in Nottingham and Lancaster. Parallel studies are taking place in Belgium and the Netherlands which will provide added value and permit cross cultural comparisons of research

It is stated that continuous deep sedation until death may be used as a substitute for euthanasia. The UK data set is comprised of surveys completed by UK medical practitioners. This will be data from use of end of life pathways such as LCP...                                                                                                                                      

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.

Existing literature reports that sedation results as a "side-effect" in otherwise refractory symptom control.

This ESRC-funded report concurs -

Sedation in end of life care is associated with intense ethical conjecture. In spite of a move towards guidelines, the practice is defined in different ways, with international variation in implementation. Clinicians in the UK describe sedation as a ‘side effect’ of their intent to control symptoms, are concerned not to hasten death and seek to build consensus about the best path of action when managing suffering. UK nurses have significant responsibility for deciding when to commence medications prescribed in advance of symptoms and need education about the ethical dimensions of their practice. The Liverpool Care Pathway frames practice, especially in non-hospice settings.

The UK clinicians will be well advised to report this side effect at the Yellow Card website which exists for this purpose. Patient safety is a paramount consideration...!

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