1. E ND OF LIFE CARE P ALLIATIVE CARE CONFERENCE 14 TH M AY 2014 Rachel Bond Macmillan Palliative Care Clinical Nurse Specialist Sheffield Teaching Hospitals

2. T HINK FOR A MINUTE ABOUT END OF LIFE CARE. What comes to mind ? ……….

3. P OSSIBLE SUGGESTIONS Specialist palliative care. Hospice or palliative care unit. End of life care pathway (EoLCP).

4. W HAT SHOULD COME TO MIND ? …… EVERYONE’S BUSINESS. One certainty for all. One chance to get it right. Everyone here today cares for dying patients.

5. HISTORY OF LIVERPOOL CARE PATHWAY ( LCP ) Developed in 1997 by Marie Curie Palliative Care Institute, Liverpool (MCPCIL) Based on a hospice model of care of the dying. Idea was to enable replication of hospice care in any care setting.

6. END OF LIFE CARE PATHWAYS Based on guiding principles of LCP. Enabled organisations to develop a pathway that met their patients needs. Enabled organisations to take ownership of the pathway. STH End of Life Care Pathway for the last hours/days of life.

7. W HERE DID IT ALL GO WRONG ? …… Lack of engagement in end of life care. Inappropriate use of the pathway. Extensive negative media coverage POOR COMMUNICATION.

8. M EDIA QUOTES “Mother put on pathway to death” “LCP denies patients fluids” “LCP helps us to free up beds says Dr” “A pathway to legal execution”

9. MORE CARE, LESS PATHWAY 2013 Baroness Neuberger was commissioned by government to undertake an independent review of end of life care pathways following significant negative media coverage about poor end of life care and pathways. Evidence was sought from the public, HCP’s, professional bodies. A review of academic literature. A review of hospital complaints. A survey of HCP’s.

10. MORE CARE, LESS PATHWAY 2013 “ When applied correctly the LCP does help patients to have a dignified and pain free death and the panel supports the principles of it”

11. KEY FINDINGS Tick box exercise. Lack of clear definition of terminology. Difficulty in diagnosing death. Misunderstanding of use of EoLCP.

12. EVIDENCE OF: Falsifying records. Good and bad decision making. Too many serious cases of unacceptable care. eg. Too many examples of patients being denied food or fluids.

13. “It is the way the LCP has been misused and misunderstood that has led to such great problems, along with it being too generic in it’s approach

14. NHS E NGLAND J ULY 2013 Guidance for Nurses and Doctors on care of the dying patient and their family. Produced in direct response to Neuberger report (2013) Guidance advised that dying people should continue to receive good end of life care.

15. LEADERSHIP ALLIANCE FOR THE CARE OF DYING PEOPLE ( LACDP ) Formed in October 2013. Formed and led be Dr Bee Wee. A coalition of national organisations, charities and others with a strong interest in end of life care.

16. LACDP COMMITMENT “To ensure that everyone who is in the last hours or days of life, and those important to them, receive high quality care, tailored to their needs and wishes and delivered with compassion and competence”.

17. LACDP KEY POINTS There will not be a national tool to replace LCP. Focus will be on what care should be like, not protocols and tick boxes. Professionals are expected to demonstrate attention to FIVE priority areas. Service providers & commissioners are expected to create & support systems, & learning & development opportunities to make this happen.

18. LACDP FIVE PRIORITY AREAS No hierarchy. All to be seen as equally important. Implementation guidance to be made available. End of life care will be one of eight core service areas to be inspected by CQC.

19. PRIORITY AREA ONE The possibility that a person may die within next few hours/days is recognised and clearly communicated. Decisions made and actions taken are in accordance with a person’s needs and wishes. These are regularly reviewed.

20. PRIORITY AREA TWO Sensitive communication takes place between staff and the person who is dying and those identified as important to them.

21. PRIORITY AREA THREE The dying person and those identified as important to them are involved in decisions about treatment and care to the extent that the person wants.

22. PRIORITY AREA FOUR The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

23. PRIORITY AREA FIVE An individual plan of care, which includes food and drink, symptom control, psychological, social and spiritual support is agreed, coordinated and delivered with compassion.

24. AWAITED FROM LACDP SUMMER 2014….. A document which will: Set out what dying people & those important to them should expect. Include a statement of responsibilities of health & care staff to meet five priority areas. Provide implementation guidance for service providers & commissioners.

25. A FINAL THOUGHT…… When you are next on duty what are you most likely to deal with: A fire ? A dying patient & their family ? Which of these do you receive regular updates & training for ?....................

26. REFERENCES LACDP (2013) Engagement with patients’ families & carers. NHS England. NHS England(2013) Guidance for nurses & doctors in caring for people in the last days of life. Neuberger (2013) More care, less pathway. A review of the Liverpool Care Pathway. Sheffield Teaching Hospitals (2011) End of life care pathway, last hours to days of life. Version 4.

27. LACDP Membership The alliance is chaired by NHS England. Other members include: CQC, College of Health Care Chaplains, GMC, General Pharmaceutical Council, Health Education England, Macmillan Cancer Support, Marie Curie Cancer Care, NICE, NHS Improving Quality, NMC, Public Health England, Royal College of GP’s, RCN, Royal College of Physicians, Sue Ryder Care.