REPORT TO TRUST BOARD Date: 30th September 2013 Agenda No: 6.5 Title of Document: Independent Review of the Liverpool Care Pathway Report Author: : Dr Debra Swann, Palliative Medicine Consultant; Caroline Adams, Clinical Nurse Specialist Palliative Care, Edward Adams, Director of Corporate Governance Lead Director: Zoë Packman, Director of Nursing, Midwifery and AHPs Steve Ebbs, Medical Director Summary: The Liverpool Care Pathway for the Dying Patient (LCP) was implemented at Croydon University Hospital (CUH) in 2007, as best practice for guiding and documenting adult end of life care. The report “ More Care Less Pathway – A Review of the Liverpool Care Pathway” was published by an Independent Review panel, chaired by Baroness Julia Neuberger, in July 2013. The review recommends that the LCP be phased out within the next six to twelve months and is replaced with an end of life care plan. The palliative care team at CUH consulted with the Croydon Consultant’s committee, the Quality and Clinical Governance committee and a lay member of the Croydon End of life care committee, about continuing to use version 12 of the LCP until an appropriate alternative is available. There was full support from all of those consulted with their suggestions incorporated into this final report. Until national proposals are produced for a new framework, Croydon proposes to continue to use the latest version of the LCP (version 12), subject to stringent safeguards, notably that the decision to place a patient on the LCP will be taken by the patient’s Consultant, having discussed this with the patient (where possible) and the patient’s family and that the family are in agreement. CHS staff training will include priorities for the care of patients at the end of life across all clinical staff, and the Trust will work towards providing a seven day a week face to face specialist palliative care service with on-going provision for advice out-of-hours. In accordance with the recommendations of the Neuberger Committee that a lay Board member should lead take responsibility for the care of dying patients across the Trust, Godfrey Allen will assume this responsibility in Croydon. Recommendations: 1. CHS will continue to use V12 LCP as a framework for managing the end of life care for patients who are in the last few hours/days of life. With the provision that this decision has been made by their consultant, and where their consultant has discussed LCP with their family, and where family are in agreement. 2. CHS will follow any national recommendations as they are released for guidance in end of life care. 3. The LCP framework will be discontinued when a viable alternative is provided nationally. 4. CHS clinical staff will receive training on priorities for the care of patients at the end of life. 5. CHS will work towards providing a seven day a week face to face specialist palliative care service with on-going provision for advice out-of-hours. Corporate Objectives - Corporate Objectives : This serves the objectives both of delivering high quality, integrated and patient-centred care (SO1) and working with partners to improve the health and wellbeing of the people of Croydon (SO5) Who has been consulted in the production of this report: Proposal was agreed by EMB on 11th September Has an equality impact assessment (EIA) form been completed? report Not applicable for this If not applicable, Please state why an EIA is not applicable. This document applies to all adult patients treated at the end of life by CHS. Has legal advice been taken? report Does this report have any financial implication? If so, has the report been approved by the Finance Directorate? Key Risks: Risks reflected in Corporate Risk Register Yes/No Not applicable for this No Independent Review of the Liverpool Care Pathway The Liverpool Care Pathway for the Dying Patient (LCP) was implemented at Croydon University Hospital (CUH) in 2007, as best practice for guiding and documenting adult end of life care. The most recent LCP document, Version 12 LCP, was implemented across the hospital in Summer 2012. The report on the findings of the Independent Review of the LCP chaired by Baroness Julia Neuberger was published July 2013. Version 12 LCP began to address some of the concerns subsequently raised in the Neuberger Report, particularly in relation to nutrition and hydration at the end of life. However, the review recommends that the LCP be phased out within the next six to twelve months and is replaced with an individualised end of life care plan. As an interim, we propose that CUH will continue to use Version 12 of the LCP as a framework to provide patient and family centric end of life care for those patients who meet the criteria for the pathway, whilst an alternative is developed. Use of the LCP will be phased out when a viable alternative is agreed. The new framework will be implemented by the Palliative Care Team. The Palliative Care Team strongly believe that abrupt withdrawal of Version 12 LCP will create a greater risk that poor quality end of life care may be delivered by CHS, than continuing to use Version 12 LCP with the caveats proposed in this report. Therefore, the Palliative Care Team recommend to CHS that our holding position will involve continuing to use Version 12 LCP where the decision to start the pathway is made by the managing consultant or GP in discussion and agreement with patient, where possible, and family. We have advised teams to have a very low threshold for referring dying patients to palliative care, whether or not they have specialist palliative care needs. We have modified our practice, that if families express any concern about implementing the document (Version 12 LCP) we will ensure that good quality end of life care is provided without the framework in place. In the short term, we will audit month by month those patients cared for using Version 12 LCP ensuring documented discussion took place with patient and family by the consultant that the patient is approaching the end of life, with the rationale for using the document, and that regular review took place. Interim arrangements: We have recommended that for all patients cared for using the LCP framework, teams must: Ensure that any decision to put any patient on the LCP is made only by a consultant who best knows the patient following a face to face assessment, in consultation with the patient (wherever possible) and family/carers, and other members of the multi-professional team. Ensure that the decision to place the patient on the LCP has been discussed with and agreed with the patient (if possible) and family if patient is not able to have that conversation Ensure that the patient’s family is aware that the patient is on the LCP, understands the reason and purpose of this, and agrees with this decision. Continue to reassess the patient regularly and frequently. Ensure a consultant review of the decision for the patient to remain on the LCP, ideally by the consultant and team who best know the patient. Communicate with the patient (wherever possible) and family/carers regularly to address questions or concerns about any aspect of care, or the LCP itself. If a patient remains on the LCP, continue to implement it properly. This includes regular assessments, symptom control and comfort measures (including offering oral fluids and good mouth care), communication with the patient and family/carers, and provision of psychological, social and spiritual care. If a patient comes off the LCP, continue to pay attention to, and address, symptom control, comfort measures, and psychological, social and spiritual care, alongside any other treatment. Reassess the patient regularly and frequently so that the care plan can be adjusted, taking into account the patient’s wishes (where known) and family’s views, especially their knowledge of the patient’s wishes. For patients who are not cared for using the LCP but who are likely to die within the next few days, doctors and nurses must: Assess the patient regularly and frequently so that an end of life care plan can be made or adjusted, taking into account the patient’s wishes (where known) and families’ views. Communicate with the patient (wherever possible) and family/carers regularly to address questions or concerns about any aspect of care. In particular, families need to be warned if the patient is likely to die in the next few days or hours, so that they have time to begin preparing themselves. Continue to pay attention to, and address, symptom control and comfort measures (including offering oral fluids and good mouth care), and provision of psychological, social and spiritual care. It is established CUH practice that patients cared for at the end of life may continue, start or stop clinically assisted hydration and/or nutrition with all decisions made in an individual’s best interests, in line with the Version 12 LCP framework. Because of heightened awareness about the LCP at the moment, there may be increased anxiety. Professionals should go out of their way to check if patients and their families have any concern about their end of life care, whether or not the Liverpool Care Pathway is being used. There should be a very low threshold for referral to the specialist palliative care team for end of life care advice. Next Steps The individual recommendations of the Neuberger Report requiring a local response by Croydon Health Services NHS Trust are listed below. There are additional recommendations awaiting national guidance. Neuberger Recommendations 7. Falsification of documentation: Clinicians should be reminded by their registration bodies that the deliberate falsification of any document or clinical record, in order to deflect future criticism of a failure of care, is contrary to GMC and NMC guidelines, and therefore a disciplinary matter. CHS Position GMC and NMC standard Responsibility All staff 14. Decisions to initiate an end of life care plan out of hours : Every patient diagnosed as dying should have a clearly identified senior responsible clinician accountable for their care during any ‘out of hours’ period. Unless it is unavoidable, urgent, and is clearly in the patient’s best interests, the decision to withdraw or not to start a life-prolonging treatment should be taken in the cool light of day by the senior responsible clinician in consultation with the healthcare team. The practice of making such decisions in the middle of the night, at weekends or on Bank Holidays, by staff that do not have the requisite training and competence, should cease forthwith. Established CUH practice that decision to start LCP is made by Consultant, in consultation with MDT, in line with Version 12 (V12) LCP framework Underpinned by consistency across palliative care teaching, highlighted by National Care of the Dying Audit of Hospitals3 (NCDAH3). Snapshot audit after Report publication of most recent CUH LCP deaths: decision to start LCP made and documented by consultant in all 9 cases reviewed All Consultants 19. Nutrition and hydration: All staff in contact with patients should be trained in the appropriate use of hydration and nutrition at the end of life and how to discuss this with patients, their relatives and carers. It is established CUH practice that patients cared for using LCP may continue, start or stop clinically assisted hydration and/or nutrition with decisions made in an individual’s best interest. In line with V12 LCP framework. Underpinned by consistency across palliative care teaching, highlighted by NCDAH(3). 20. Nutrition and hydration: There should be duty on all staff to ensure that patients who are able to eat and drink should be supported to do so All staff are reminded that wherever possible patients should be helped to eat and drink for as long as possible 21. Nutrition and hydration: Failure to support oral hydration and nutrition when still possible and desired should be regarded as professional misconduct 23. Sedation and pain relief: Before a syringe driver is commenced, this must be discussed as far as possible with the patient, their relatives or carers, and the reasoning documented. Failure to support oral hydration and nutrition would be considered as professional misconduct and will be reported via the appropriate channels Junior doctor induction includes training on symptom control at the end of life (EOL) including indications for use of syringe driver and medications for symptom management at the end of life. Regular trained nurse study sessions also include this training. 24. Sedation and pain relief: New research is needed on the use of drugs at end of life, and in particular on the extent to which sedative and analgesic drugs themselves contribute to reduced consciousness, and perceived reduction of appetite and thirst. Anticipatory prescribing of symptom management medications at the end of life on a prn basis is best practice. The National Care of the Dying Audit of Hospitals (2) looked at prescribing and use of symptom meds in last 24 hours of life. All staff All clinical staff (medical, nursing and support team) Medical director and director of nursing All doctors All nurses Palliative Care Team CUH results: 93% patients on LCP had Midazolam prescribed prn. Only given in 11% of the patients, (median dose 2.5mg), 57% of patients on LCP were prescribed a syringe driver. 53% of those syringe drivers contained Midazolam (median dose 10mg/24 hours) 25. Financial incentives: There is no payment per patient Trust Payments ‘per patient implemented on the LCP, or equivalent approach’ should cease. or equivalent approach at CUH. The palliative care consultant negotiated to exclude this measure from the 2011/12 EOLC CQUIN indicators 26. Accountability: A named consultant or GP, respectively, should take overall responsibility for the care of patients who are dying in hospital or the community. All consultants understand that they are responsible for their own patients who die in the Trust. This was reiterated at the Consultant’s committee meeting on22.08.13 by Dr Swann All Consultants (GPs for community patients) 27. Accountability: The name of a registered nurse responsible for leading the nursing care of the dying patient should be allocated at the beginning of each shift. This nurse will be responsible also for communicating effectively with the family, checking their understanding, and ensuring that any emerging concerns are addressed. Named nurse system in place on all adult wards Ensure the named nurse is made known to the patient/family at the start of each shift Ensure all trained nurses aware of the importance of responsibility for each dying patient and their family on a named nurse basis Director of Nursing 28. Accountability: The boards of healthcare providers providing care for the dying should give responsibility for this to one of its members – preferably a lay member whose focus will be on the dying patient, their relatives and carers – as a matter of urgency. This is particularly important for acute hospitals. CHS Executive Board to appoint a lay member to be responsible for care of dying patients across the Trust. Godfrey Allen (Chair of the Quality and Clinical Governance Committee) has agreed to undertake this role Snapshot audit after Report publication of most recent CUH LCP deaths: discussion about dying, prognosis and LCP made and documented by consultant or STR in all 9 cases reviewed. Family agreement documented in all 9 cases Established CUH practice that decision to start LCP is made by Consultant, in consultation with MDT, in line with V12 LCP framework Underpinned by consistency across palliative care teaching, highlighted by NCDAH(3). Chair of Executive Board 29. Documenting an end of life care plan: Guidance should specify that the senior clinician writes in the patient’s notes a record of the face to face conversation in which the end of life care plan was first discussed with the patient’s relatives or carers. The record of that conversation must include the following: That the clinician explained that the patient is now dying and when and how death might be expected to occur. If the family or carers do not accept that the patient is dying, the clinician has explained the basis for that judgement. That the relatives or carers had the opportunity to ask questions. 30. Documenting an end of life care plan: To be developed when National A shared care folder, kept at the hospital guidance on replacing LCP is bedside and designed for communication available between patients, relatives and the staff, should be introduced, supported by training for staff on All consultants Palliative Care Team will full support of Trust how to use it. 31. Documenting an end of life care plan: There should be better integration in the community between LCP or other similar documentation and the existing system of shared care folders, so that the care provided by relatives and carers (professional or otherwise) is noted, and their contribution is incorporated into documentation. Croydon Community service to continue to follow CHS guidance which is to use the LCP where patients are known to community palliative care services. 32. Independent advocacy: For each patient on an end of life care plan that has no means of expressing preferences and no representation by a relative or carer, views on their care should be represented by an independent advocate, whether appointed under the Mental Capacity Act 2005, a chaplain, or an appropriate person provided through a voluntary organisation. This applies to people of whatever age who lack capacity. Croydon IMCA Service involved as needed 33. Availability of palliative care support: Funding should be made available to enable palliative care teams to be accessible at any time of the day or night, both in hospitals and in community settings, seven days a week. Mon-Fri 9-5 face to face service provided by CUH palliative care team. OOH telephone advice provided day/night/weekends/ BH by St Christopher’s Hospice on-call Consultant. -Plans underway to pilot an extended 6 day/week 9-5 face to face service by CNSs by end 2013. Trust 37.Guidance: In addition to the core driving palliative care philosophy common to all the guidance, there would be elements of technical guidance specific to certain disease groups. They should be designed to be readily adapted for local use to meet the needs of individuals. Increased uptake of Co-ordinate my Care record (CMCR) for patients discharged across the Trust with life-limiting conditions and accessing the disease specific care plans for conditions like: congenital heart disease, MND, renal failure Palliative care EOLC CQUIN lead 38. End of life care plan: Use of the Liverpool Care Pathway should be replaced within the next six to 12 months by an end of life care plan for each patient, backed up by condition-specific good practice guidance. CHS to continue to use the LCP for those patients who meet the criteria and for whom this decision has been made by their consultant, and where their consultant has discussed LCP with their family, and where family are in agreement CUH palliative care team will implement new EOLC guidance in accordance with guidance from Association of Palliative Medicine and other Palliative Care Team ADN for Integrated Care for CHS CCG need to agree course of action for those patients outside this remit IMCA service All staff agencies. CUH will stop using LCP within 12 months. 40. Hospital inspections: End of life care should be incorporated urgently into the hospital inspection programme of the newly announced Chief Inspector of Hospitals. CQC interviewed Palliative Care Consultant and ward staff about end of life care as part of their visit 17-18.9.13 Executive Board