End of Life Care Strategy: Quality Markers Consultation.
A response from the Medical Ethics Alliance.
For the attention of the End of Life Care Team, Room 402, Wellington House, 133-155 Waterloo Road, London SE1 8UG.
Since we heard about this consultation very late in the day we will limit our response to expressions of concern about the Liverpool Care Pathway (LCP). In our view the LCP should not be used as a key part of the Department of Health End of Life Care Strategy.
- The Medical Ethics Alliance raised concerns about the LCP with Professor Mike Richardson, in his role as Chairman of the Department of Health Advisory Board for the End of Life Strategy, in July 2007. Our Vice Chair Dr Gillian Craig told Professor Richardson: “It is not satisfactory for the Department of Health to promote a clinical pathway that ignores the hydration debate.” (Craig GM. E-mail dated July 12th 2007). Several members of the Advisory Board were given complimentary copies of Dr Craig’s book “No Water-No Life: Hydration in the Dying” which documents a decade of debate about the role of hydration at the end of life. Regrettably the Department of Health paid little attention to this matter, and so the “quality markers” they now present for consultation are fundamentally flawed.
- The Liverpool Care Pathway promotes a regime of sedation without hydration that is fatal within a matter of days in 95% of cases. It is being used in patients who are “apparently dying”- this diagnosis being made on the basis of dangerously vague criteria that are set out in a flimsy leaflet headed “Guidelines for use of the LCP- professional”. This aforesaid leaflet purports to be a legal document but was produced by the NHS End of Life Care Programme and Marie Curie Cancer Care.
- Use of terminal or palliative sedation, as in the LCP, raises complex medico-legal questions that have not yet been addressed by the courts. The crucial point at issue in law will be the intention of those who put patients on to the LCP. If the Lo and Rubenfeld criteria are not met the LCP could be construed as a form of euthanasia (Lo and Rubenfeld 2005).
- We suggest that it is inappropriate for the Department of Health to require all Primary Care Trusts to adopt a flawed pathway as their approach to care for people in the last days of life and to advocate the use of a standardised approach (eg Liverpool care Pathway or equivalent) as set out in the consultation document for example at Annex A paragraph 1.6, para 2.5, para 3.9, para 3.14, para 6.4.
- We fear that the widespread adoption of the Liverpool Care Pathway or some similar pathway- will reduce the skills of health care personnel to a “tick box” mentality that will undermine the hospice movement and the specialty of palliative care.
- We recommend that the Department of Health should adopt a pre-LCP pathway such as the CELT pathway for use in England as Wales, as well as in Scotland. This would reduce the risk of treatable conditions being overlooked at the end of life.
- We recommend that all health care staff caring for the dying be trained to recognise and treat dehydration, offering subcutaneous hydration when appropriate, according to techniques pioneered by Fainsinger and Bruera in Canada and Finlay et al in the UK.
- We recommend that palliative carers and geriatricians should work together to ensure the best possible standard of care for all people in the last years of their lives, whether they are in their own homes or in hospital or care homes.
For further comments and recommendations please see references below. Copies of recent references will follow in the post.
References and further reading.
Craig. GM. Palliative care in overdrive: patients in danger. American Journal of Hospice and Palliative Medicine. Vol. 25:2 April/May 2008, p155-160. © Sage Publications. 10.1177/1049909107312596 http://ajhpm.sagepub.com hosted at http://online.sagepub.com
Craig GM. Innovative approaches and ethical issues associated with end of life care. Westminster Healthcare Forum Keynote Seminar- Palliative and End of Life Care. 9th December 2008.
Craig. GM. Palliative Care and sedation: the Liverpool Care Pathway. BMJ online debate. http://www.bmj.com/cgi/eletters/336/7648/781. 19th May 2008.
Craig GM (Ed) “No Water-No Life: Hydration in the Dying” ISBN 0 9545445-3-6 Fairway Folio 2005. Available from Medical Ethics Books PO Box 341 Northampton NN3 2WZ or from good independent booksellers.
Lo and Rubenfeld. Journal of the American Medical Association. Oct 12th 2005. Vol 294:12, 1810-1815.
Dr GM Craig. Vice Chair Medical Ethics Alliance.