1. The Liverpool Care Pathway What have we learned which should guide the future? 1. Clinical issues 2. Health system issues 3. Societal issues 4. Scottish Government

2. Friday, September 18, 20152Event Name and Venue Lost in translation? Implications for care of the dying from the withdrawal in the UK of the Liverpool Care Pathway Professor Bridget Johnston Professor of Palliative and Supportive Care Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care School of Health Sciences The University of Nottingham

3. The fall of the LCP

5. Outcome of the National Independent Review (Neuberger report, 2013) “There is no doubt that, in the right hands, the Liverpool Care Pathway supports people to experience high quality and compassionate care in the last hours and days of their life. But evidence given to the review has revealed too many serious cases of unacceptable care where the LCP has been incorrectly implemented…..What we have also exposed in this Review is a range of far wider, fundamental problems with care for the dying – a lack of care and compassion, unavailability of suitably trained staff, no access to proper palliative care advice outside of 9-5 Monday to Friday”. (Neuberger, 2013 )

6. What went wrong?

7. In health policy, a particular risk is that…a perverse incentive…is introduced through regulations and reimbursement (Currow and Abernethy, Lanc Onc; 2013; 813:193) 9/18/20157

8. Particular areas of concern / recommendation Overall, many (very junior) staff were reported to be implementing the LCP incorrectly, leading to… ‘…sloppy and unmonitored decision- making’ (p. 21) Was this a lack of training or a lack of basic adherence to ethical principles? ( See, Wrigley A. J Med Ethics Published Online First: [21 st May, 2014] doi:10.1136/medethics-2013-101780 ) Lack of staffing and lack of organisational priority on palliative care/ care of the dying played a major role Care variation- some very good care/ some poor Decision-making Consent Involvement of/ discussion with relatives about care planning Quality of care and esp. decisions relating to: -Hydration and nutrition -Pain and sedative use Worries about financial incentives distorting care

9. Looking back- 4 key mistakes 1.The belief that there could be a simple solution to improving quality of care: that the LCP=sorted it 2.The promotion of the idea that clinical decision- making in care of the dying is somehow ‘special’ or different 3.The focus on ‘diagnosing dying’ rather than quality of ongoing care in serious illness of uncertain outcome 4.The relative lack of involvement of specialist palliative care in mainstream care of seriously ill / dying people

10. The LCP debacle: a catalyst for change? The wider implications

11. 1.The need for better evidence and implementation studies in palliative care 2.The centrality of communication and good clinical decision-making across the course of disease 3.Marginalization and moral distress in nursing: ignored in most debates

12. 1. Lack of evidence: three areas Regarding palliative care and the care of the dying: - practically and ethically challenging to do research -research not funded or seen as a high priority (0.18% of cancer research funding in UK; 0.9% in USA) 1 - often needs a more flexible approach to ‘evidence’ and ways of doing research; not commonly recognized Regarding the risks and benefits of ‘care pathways’ Regarding questions of ‘implementation’ science 1. Cicely Saunders Foundation, www.cicelysaundersfoundation.orgwww.cicelysaundersfoundation.org

13. What do we know? A rapid synthesis of evidence

14. Evidence- effects of end-of-life care pathways for managing the dying phase Overall: There is no strong evidence on potential benefits/ adverse effects or risks. Benefits: symptom management, and professionals’ (but not family members’) ratings of care quality and communication. Implementation: moderate evidence that implementation is often poor. Are the suggested negative consequences of LCP associated with: -actual pathway-based care -poor implementation of pathway-based care Or: - emotional suffering associated with illness, death and bereavement? State of evidenceImplications?

15. 9/18/201515

16. 2. Communication and decision-making Treating the LCP as if it gave a single ‘one size fits all’ guide to end of life care, failing to engage in good ethical decision-making, and failure to communicate the combined clinical and ethical reasoning effectively to colleagues, patients and their relatives would constitute a failure to implement the LCP as it was intended. Wrigley A. J Med Ethics Published Online First: [21 st May, 2014] doi:10.1136/medethics-2013-101780

17. 3. Marginalisation and moral distress in nursing ‘The lack of investment in care …in sharp contrast to the level of responsibility and skills required (Equality and Human Rights Commission, 2012:96). ‘…there are constant pressures on staff and some find the workload unmanageable’ (National Review, LCP, para 2.25) Moral distress: a day to day experience? Lack of support / clinical and ethical education for nurses making critical end-of-life care decisions at the bedside

18. The need for minimum staffing for safety and quality of care More than eight patients per nurse on a “regular basis” can increase the risk of harm in adult hospital wards, according to ground-breaking new guidelines on safe staffing levels in the NHS…Nursing Standard, May, 2014

19. 9/18/201519

20. An increase in a nurses’ workload by one patient increased the likelihood of an inpatient dying within 30 days of admission by 7% ( every 10% increase in bachelor’s degree nurses was associated with a decrease in this likelihood by 7%. These associations imply that patients in hospitals in which 60% of nurses had bachelor’s degrees and nurses cared for an average of six patients would have almost 30% lower mortality than patients in hospitals in which only 30% of nurses had bachelor’s degrees and nurses cared for an average of eight patients. 9/18/201520

21. Concluding summary The Liverpool Care Pathway was an attempt in the UK to ‘mainstream’ good practice from the hospice movement Its failure was threefold: lack of evidence of effectiveness/ suitability; poor implementation; poor understanding of the problem that it needed to address. Repeated enquiries expose the ‘problem’ as one of providing better care for seriously ill and / or frail people with uncertain prognoses; not diagnosing dying The development of new models of palliative care to meet needs, plan and coordinate care over a long time period is a humanitarian challenge Building on existing innovations/ evidence internationally will yield good outcomes for patients and for societies.

22. 9/18/2015Event Name and Venue22 Further information: Bridget.Johnston@nottingham.ac.ukBridget.Johnston@nottingham.ac.uk http://www.nottingham.ac.uk/research/groups/srcc/index. aspx

23. The Liverpool Care Pathway What have we learned which should guide the future? 1. Clinical issues 2. Health system issues 3. Societal issues 4. Scottish Government

24. A Martian arriving in Scotland and looking at our hospitals would currently deduce that end of life care is a high priority 1.Agree 2.Disagree

25. What are the most important topics for researchers? 1.better symptom management 2.better prognostication in non-malignant conditions 3.effective communication with patients/families 4.approaches to securing patient and family feedback

26. The Liverpool Care Pathway What have we learned which should guide the future? 1. Clinical issues 2. Health system issues 3. Societal issues 4. Scottish Government