SUNDAY, 11 NOVEMBER 2012
Liverpool Care
Pathway – Anecdotal, Anecdotal, Anecdotal
Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)
Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)
My Lords, there is no procedure, as there is no such inquiry. A number of organisations, led by the National End of Life Care Programme, Dying Matters and the Association for Palliative Medicine, are looking into complaints, patient experience and clinical opinion on the Liverpool Care Pathway. We do not make policy decisions based on anecdote. If the work in hand suggests cause for concern, we will respond on the basis of that evidence.
(They Work For You.com)
(They Work For You.com)
"We do not make policy decisions based on anecdote."
These comments posted by Harlow Blogger -
Posted by Harlow blogger to "Liverpool Care Pathway – Wanting And Abysmal"
at 20 November 2012
Harlow blogger20 November 2012 23:38 Do you have details if this survey on your blog, Eldoel? It would be interesting to have more information about the research methodology used, the questions asked, the number of people who were approached and the size of the sample that responded.
Did, for example, all of the 25% who did not attribute excellence to their experience of the LCP, criticise the LCP. Or did they give a range of responses, ranging from, for example, 'okay' to 'neither good nor bad', 'don't know', 'poor', 'very poor'?
Around 130,000 people are said to have died on the Liverpool Care Pathway in just one year. If only 5% of their families were critical of the LCP, that would represent around 6,500 complaints. If the figure is likely to be 25% then this represents over 32,000 complaints.
Harlow blogger20 November 2012 23:45 If I recall the figures correctly, the government's Green Paper on the recruitment industry, which led to an Act of parliament, stringently controlling the industry, cited some 1% of calls for advice to its helpline and c POINT FOUR PERCENT RATE OF COMPLAINT.
Harlow blogger20 November 2012 23:58 Some of those who defend the LCP in its current form criticise reports of abuse of the LCP as 'anecdotal' they appear to suggest that these reports are therefore inconsequential.
However, almost all of the evidence used by the above Green Paper on the recruitment industry was anecdotal.
The Green Paper on the recruitment industry nevertheless led to stringent statutroy regulation of the industry.
Among the requirements of the regulation are:
a requirement for best practice in accurately recording every stage of the recruitment process and for a fully comprehensive paper trail - one that applicants and regulators have access to.
I have no details of
Jane Cummings' survey. I agree with your comments, but the point is that
- Actually, the outcome
of the survey is not at all impressive by any standard.
- All such surveys, by
their very nature are anecdotal!
Dear Jane, in addition to our comments already posted on these
pages, may we direct you to Lord Howe's comments reported above in regard to
anecdote? Your survey is not worth a jot.
This from a list of abstacts on Paliative Medicine -
Assessing quality of care for the dying: The development and initial validation of a postal self-completion questionnaire for bereaved relatives
Abstract
Background: Evaluating ‘quality of care for the dying’ from the patients’ perspective has practical and ethical difficulties: an alternative is to use bereaved relatives’ views as ‘proxy’ measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient.
Aim: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement.
Design: The instrument, ‘Evaluating Care and Health Outcomes – for the Dying’ (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test–retest reliability assessment with bereaved relatives (n = 80)
Setting: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives.
Results: The systematic and robust process of questionnaire development generated evidence for ECHO-D’s face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test–retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation.
Conclusions: ECHO-D is the first instrument specifically to assess ‘quality of care for the dying’, focussing on the last days of life, and has direct links with the use of the LCP Programme.
These results are neither exceptional
nor promising. If Jane's survey is based upon this questionnaire - apart
from the disadvantage of being 'anecdotal' - then that, too,
is neither exceptional nor promising and casts further shadow and
doubt upon its outcome.
Jane, you have nothing to crow about!
These following abstracts are of interest -
The effect of policy on end-of-life care practice within nursing care homes: A systematic review
Abstract
Background: The number of older people in the UK is increasing. A significant proportion of end of life care for this population is currently provided and will increasingly be provided within nursing care homes.
Aim: To identify the impact of implementing end of life care policy with regard to the use of the Gold Standards Framework in Care Homes programme, the Liverpool Care Pathway (or an Integrated Care Pathway) and educational/training interventions to support the provision of end of life care within nursing care homes within the UK.
Design: Systematic literature review of published literature and reports.
Data sources: An electronic search was undertaken of five databases-Medline, CINAHL, EMBASE, Web of Science and the Cochrane library and websites of government and palliative care organisations for papers and reports published between 2000 to June 2010. The reference lists of studies that were retrieved for the detailed evaluation were hand-searched for any additional relevant citations.. Only studies that included comparative outcome data were eligible for inclusion.
Results: Eight papers/reports, incorporating information from three studies were identified. Two studies reported on the implementation of the Gold Standards Framework in Care Homes programme and one the implementation of an Integrated Care Pathway for the last days of life. Improvements occurred in resident outcomes and in relation to staff recognising, managing and meeting residents needs for end of life care.
Conclusions: The studies provided limited evidence on improved outcomes following the implementation of these interventions. Further research is needed, both within the UK and internationally, that measures the process and impact of implementing these initiatives.
Assessing quality of care for the dying: The development and initial validation of a postal self-completion questionnaire for bereaved relatives
Abstract
Background: Evaluating ‘quality of care for the dying’ from the patients’ perspective has practical and ethical difficulties: an alternative is to use bereaved relatives’ views as ‘proxy’ measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient.
Aim: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement.
Design: The instrument, ‘Evaluating Care and Health Outcomes – for the Dying’ (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test–retest reliability assessment with bereaved relatives (n = 80)
Setting: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives.
Results: The systematic and robust process of questionnaire development generated evidence for ECHO-D’s face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test–retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation.
Conclusions: ECHO-D is the first instrument specifically to assess ‘quality of care for the dying’, focussing on the last days of life, and has direct links with the use of the LCP Programme.
I shall endeavour to respond to further comments left on this Blog. Please bear with me.
Thanks, Eldoel.
ReplyDeleteAnecdotal evidence isn't necessarily totally useless, Social Science used to conduct massive participant observation surveys and anecdotal studies many years ago that produced some fascinating and useful material, in particular when viewed through the lens of the present, or when researchers return to the same study groups and compare how things are with them now. However, the results are hard, or nigh on impossible to measure and compare and there are huge problems with objectivity.