Liverpool Care Pathway for the Dying Patient

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Liverpool Care Pathway for the Dying Patient
Developed byRoyal Liverpool University Hospital
IntroducedLate 1990s
IndustryPalliative care
Superseded byIndividual approach to end of life care for each patient

The Liverpool Care Pathway for the Dying Patient (LCP) was a care pathway in the United Kingdom (excluding Wales) covering palliative care options for patients in the final days or hours of life. It was developed to help doctors and nurses provide quality end-of-life care, to transfer quality end-of-life care from the hospice to hospital setting. The LCP is no longer in routine use after public concerns regarding its nature. Alternative methodologies for Advance care planning are now in place to ensure patients are able to have dignity in their final hours of life. [1] Hospitals were also provided cash incentives to achieve targets for the number of patients placed on the LCP. [2]

Contents

The Liverpool Care Pathway was developed by Royal Liverpool University Hospital and the Marie Curie Palliative Care Institute in the late 1990s for the care of terminally ill cancer patients. The LCP was then extended to include all patients deemed dying. Its inflexible application by nursing staff of Liverpool Community Health NHS Trust was subject to scrutiny after the poor care delivered to a relative of Rosie Cooper MP.

While the initial reception was positive, it was heavily criticised in the media in 2009 and 2012 following a nationwide roll-out. In July 2013, the Department of Health released a statement which stated the use of the LCP should be "phased out over the next 6-12 months and replaced with an individual approach to end of life care for each patient". [3] However, The Daily Telegraph reported that the programme was just rebranded and that its supposed replacement would "perpetuate many of its worst practices, allowing patients to suffer days of dehydration, or to be sedated, leaving them unable to even ask for food or drink." [4]

Aims

The Pathway was developed to aid members of a multi-disciplinary team in matters relating to continuing medical treatment, discontinuation of treatment and comfort measures during the last days and hours of a patient's life. The Liverpool Care Pathway was organised into sections ensuring that evaluation and care is continuous and consistent. It was not intended to replace the skill and expertise of health professionals.

In the first stage of the pathway a multi-professional team caring for the patient was required to agree that all reversible causes for the patient's conditions have been considered and that the patient was, in fact, dying. The assessment then made suggestions for what palliative care options should be considered and whether non-essential treatments and medications should be discontinued. [5]

In practice, the implementation of this guideline was found to be poor. Many decisions were taken in ward settings without the oversight of experienced doctors of medicine. In almost half of the cases neither patient nor family were consulted or informed that it had been decided to place the patient on the LCP. [6]

The programme suggested the provision of treatments to manage pain, agitation, respiratory tract secretions, nausea and vomiting, or shortness of breath (dyspnoea) that the patient may experience. [7] However, a 2016 Cochrane Systematic Review concluded "there is limited available evidence concerning the clinical, physical, psychological or emotional effectiveness of end-of-life care pathways." [8]

The care was not designed to be a one-way street to death. However, in 2012 controversy arose indicating that in most cases it was, and even patients who might have survived longer otherwise died because of the LCP. [9] In a response to negative media reports, Clare Henry and Professor Mike Richards issued a statement on behalf of the NHS End of Life Care Team, stating that the pathway was reversible, and that approximately 3% of patients initially put on the pathway are removed from the pathway when reassessed. [10]

Assessment

Initial assessments of the effects and value of the pathway were largely positive. A 2003 study published in the International Journal of Palliative Nursing found that nurses saw the pathway as having a generally positive effect on patients and their families. [11] A 2006 study published in the same journal found that, despite some "initial scepticism", the doctors and nurses who were interviewed saw the approach as having a valuable place in hospice care, though its use on "dying" patients on general wards was not addressed. [12] A multi-centre study was published in 2008 in the Journal of Palliative Medicine that found that nurses and relatives thought that the approach improved the management of patients' symptoms, but did not significantly improve communication. [13] The authors concluded that they "consider LCP use beneficial for the care for dying patients and their family." [13]

A 2009 study published in Journal of Pain and Symptom Management studied the impact of the pathway on the end-of-life care of over three hundred patients and found that it produced a large decrease in the use of medication that might shorten life and increased patients' involvement in their medication and care. [14] A 2009 survey of 42 carers providing the pathway was published in the Journal of Palliative Medicine , it found that 84% were "highly satisfied" with the approach and that it enhanced patient dignity, symptom management and communication with families. [15]

Research into its use outside the British healthcare system has not, however, demonstrated the same results: a cluster phase II trial conducted in Italy showed no statistically significant improvement in patients' symptom control. [16] On the other hand, the study did find significant improvements in the other four dimensions it surveyed: respect, kindness and dignity; family emotional support; family self-efficacy; and coordination of care. [16]

Jonathan Potter, the director of the Clinical Effectiveness and Evaluation Unit of the Royal College of Physicians stated in 2009 that their audits showed that "where the Liverpool Care Pathway for the dying patient (LCP) is used, people are receiving high quality clinical care in the last hours and days of life". [17] The 2009 audit looked at end-of-life care in 155 hospitals, and examined the records of about 4,000 patients. A major criticism of this study was that each of the participating hospitals was only asked to submit datasets from 30 patients: arguably, the study was heavily biased by the ability to "cherry-pick" the most favourable datasets, and the lack of availability of all data for independent scrutiny and objective assessment.

Version 12 of the LCP was launched on 8 December 2009, after more than two years of consultation. Among other revisions, it includes new decision-making support on whether or not to start the LCP; highlighted guidance to review the appropriateness of continuing on the pathway at any time if concern is expressed by either the patient, a relative, or a team member; and new prompts to support decisions on artificial nutrition and hydration. [18] [19] An editorial in the BMJ judged the new release did "much to tackle recent criticisms". [20]

Independent review

In July 2013, the results of an independent review into the LCP led by Baroness Neuberger were published. [21] Accepting the review's recommendations, the government advised that NHS hospitals should phase out the use of the LCP over the next 6–12 months, and that "NHS England should work with CCGs to bring about an immediate end to local financial incentives for hospitals to promote a certain type of care for dying patients, including the LCP. [3]

Criticism

Medical issues

A 2008 article in the American Journal of Hospice and Palliative Care criticised the Liverpool Pathway for its traditional approach and not taking an explicit position on the artificial hydration for critically ill patients. [22] A 2009 editorial in the Journal of Clinical Nursing welcomed the impetus towards providing improved care at the end of life and the more widespread use of integrated care pathways, but warned that much more research is needed to assess which of the several approaches that are in use is most effective. [23]

In 2009 The Daily Telegraph wrote that the pathway has been blamed by some doctors for hastening the death of some mortally ill patients, and possibly masking signs that the patient is improving. [24] This story was criticised by the Association for Palliative Medicine and the anti-euthanasia charity Care Not Killing as inaccurate. [5] [25] In contrast, The Times welcomed the pathway as an attempt to address patients' wishes and warned about "alarmist" press coverage of the scheme. [26] [27] A German study in 2015 found no indication of hastening death. One in ten patients improves and leaves the pathway. The other nine die. [28]

Media reports

The LCP has continued to be controversial. Many witnesses have testified that elderly patients were admitted to hospital for emergency treatment and put on the LCP without documented proof that the patient consented to it, or could not recover from their health problem; 48-year-old Norfolk man Andrew Flanagan was revived by his family and went home for a further five weeks after doctors put him on the LCP. The Royal College of Physicians found that up to half of families were not informed of clinicians' decision to put a relative on the pathway. [29]

In a letter to The Daily Telegraph, six doctors belonging to the Medical Ethics Alliance [29] called on LCP to provide evidence that the pathway is "safe and effective, or even required", arguing that, in the elderly, natural death is more often painless, provision of fluids is the main way of easing thirst, and "no one should be deprived of consciousness except for the gravest reason." [9]

Financial inducements to NHS trusts

In October 2012 figures released under the Freedom of Information Act showed that some two thirds of NHS trusts had received incentive payments for meeting "targets" for using the LCP, and that such payments totalled £12 million or more. [30]

See also

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References

  1. "Universal Principles for Advance Care Planning (ACP)" (PDF). NHS England. March 2022. Retrieved 17 February 2024.
  2. Lay, Kat. "Give water to the dying, doctors told | The Times". The Times. Retrieved 16 December 2015.
  3. 1 2 "Press release Overhaul of End of Life Care system". Department of Health. 15 July 2013.
  4. Donnelly L (1 December 2014). "Liverpool Care Pathway being 'rebranded' not axed". The Daily Telegraph . Retrieved 30 July 2018.
  5. 1 2 "The Liverpool Care Pathway". The Association for Palliative Medicine of Great Britain and Ireland. Archived from the original on 15 April 2005.
  6. Donnelly L (1 December 2012). "Half of those on Liverpool Care Pathway never told". The Daily Telegraph. London. Archived from the original on 3 December 2012.
  7. "Care for the dying patient" (PDF). Liverpool Care Pathway for the Dying Patient (LCP). Marie Curie Palliative Care Institute. Archived from the original (PDF) on 2 December 2012.
  8. Chan RJ, Webster J, Bowers A (February 2016). "End-of-life care pathways for improving outcomes in caring for the dying". The Cochrane Database of Systematic Reviews. 2 (11): CD008006. doi:10.1002/14651858.cd008006.pub4. PMC   6483701 . PMID   26866512.
  9. 1 2 Millard, P, Cole A, Bearcroft R, Craig G, Hill D, Knowles M (8 July 2012). "Deadly one-way street". The Daily Telegraph. London. Retrieved 10 July 2012.
  10. "Liverpool Care Pathway: response to media reporting" (PDF). NHS National End-of-life care programme. 15 October 2009. Archived from the original (PDF) on 31 August 2012.
  11. Jack BA, Gambles M, Murphy D, Ellershaw JE (September 2003). "Nurses' perceptions of the Liverpool Care Pathway for the dying patient in the acute hospital setting". International Journal of Palliative Nursing. 9 (9): 375–81. doi:10.12968/ijpn.2003.9.9.11764. PMID   14593273.
  12. Gambles M, Stirzaker S, Jack BA, Ellershaw JE (September 2006). "The Liverpool Care Pathway in hospices: an exploratory study of doctor and nurse perceptions". International Journal of Palliative Nursing. 12 (9): 414–21. doi:10.12968/ijpn.2006.12.9.21869. PMID   17077800.
  13. 1 2 Veerbeek L, van Zuylen L, Swart SJ, van der Maas PJ, de Vogel-Voogt E, van der Rijt CC, van der Heide A (March 2008). "The effect of the Liverpool Care Pathway for the dying: a multi-centre study". Palliative Medicine. 22 (2): 145–51. doi:10.1177/0269216307087164. PMID   18372379. S2CID   6848924.
  14. van der Heide A, Veerbeek L, Swart S, van der Rijt C, van der Maas PJ, van Zuylen L (January 2010). "End-of-life decision making for cancer patients in different clinical settings and the impact of the LCP". Journal of Pain and Symptom Management. 39 (1): 33–43. doi: 10.1016/j.jpainsymman.2009.05.018 . PMID   19892509.
  15. Mullick A, Beynon T, Colvin M, Morris M, Shepherd L, Cave L, et al. (September 2009). "Liverpool care pathway carers survey". Palliative Medicine. 23 (6): 571–2. doi:10.1177/0269216309106459. PMID   19460832. S2CID   5086172.
  16. 1 2 Costantini M, Pellegrini F, Di Leo S, Beccaro M, Rossi C, Flego G, et al. (January 2014). "The Liverpool Care Pathway for cancer patients dying in hospital medical wards: a before-after cluster phase II trial of outcomes reported by family members". Palliative Medicine. 28 (1): 10–7. doi:10.1177/0269216313487569. PMID   23652840. S2CID   206488096.
  17. "National care of the dying audit 2009" (PDF). Royal College of Physicians. 14 September 2009.
  18. Seymour J, Clark D (2018). "The Liverpool Care Pathway for the Dying Patient: a critical analysis of its rise, demise and legacy in England". Wellcome Open Research. 3: 15. doi: 10.12688/wellcomeopenres.13940.2 . PMC   5963294 . PMID   29881785.
  19. Ellershaw J, Murphy D (13 October 2009). "LCP Statement" (PDF).
  20. Edmonds P, Burman R, Prentice W (December 2009). "End of life care in the acute hospital setting". BMJ. 339: b5048. doi:10.1136/bmj.b5048. PMID   19952043. S2CID   30571434.
  21. Independent report: Review of Liverpool Care Pathway for dying patients - Department of Health, 15 July 2013.
  22. Craig G (2008). "Palliative care in overdrive: patients in danger". The American Journal of Hospice & Palliative Care. 25 (2): 155–60. doi:10.1177/1049909107312596. PMID   18445867. S2CID   11248472.
  23. Ingleton C, Gott M, Kirk S (April 2009). "The beginning of the end (of life care strategy)". Journal of Clinical Nursing. 18 (7): 935–7. doi: 10.1111/j.1365-2702.2008.02616.x . PMID   19284430.
  24. Devlin K (2 September 2009). "Sentenced to death on the NHS". Daily Telegraph . Archived from the original on 3 September 2009.
  25. "Care Not Killing". Liverpool Care Pathway. 15 September 2009.
  26. Bakewell J (14 September 2009). "The Liverpool Care Pathway brings the subject of dying into the open". The Times.
  27. Rose D (14 September 2009). "The palliative care nurse: some days I wish I worked in a shoe shop". The Times.
  28. Schulz C, Schlieper D, Altreuther C, Schallenburger M, Fetz K, Schmitz A (December 2015). "The characteristics of patients who discontinue their dying process - an observational study at a single university hospital centre". BMC Palliative Care. 14 (1): 72. doi: 10.1186/s12904-015-0070-7 . PMC   4672507 . PMID   26643576.
  29. 1 2 Adams S (8 July 2012). "Hospitals 'letting patients die to save money'". The Daily Telegraph. London. Archived from the original on 9 July 2012. Retrieved 24 July 2012.
  30. Bingham J (1 November 2012). "NHS millions for controversial care pathway". The Telegraph. Archived from the original on 31 October 2012.

Further reading