THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST END OF LIFE AND PALLIATIVE CARE

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1 THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST END OF LIFE AND PALLIATIVE CARE Agenda item A7(i) EXECUTIVE SUMMARY Specialist Palliative and End of Life Care are intrinsically linked and therefore this paper is combined to give an overview and update of these services. Although there is an overlap of patients in need of Palliative Care and End of Life Care, the services are different and complimentary; frequently one approach is required without the other. National directives include both End of Life Care and Palliative Care Service recommendations and therefore the two are embedded in this paper. The Trust is providing a skilled, enthusiastic and innovative Specialist Palliative Care Service with excellent patient outcomes, positive staff feedback and a growing National profile. The service is increasingly consulted for both cancer and non-cancer problems; the level of complexity of referrals is rising as well as the total number of referrals. The Trust is also providing strong leadership in End of Life care, maintaining excellent quality of care for patients and their families. Development and innovation has seen robust processes established to ensure maintenance of this safe and quality care across the community and acute settings. RECOMMENDATION To i) receive the report ii) note the success of both the specialist palliative and end of life care services iii) note the pressures experienced by specialist palliative care services, and the risk associated with the lack of funding for the Allied Health Professionals iv) support the resubmission of a business case for the Allied Health Professional service and v) ratify the Palliative and End of Life Care Strategy Mrs Helen Lamont Nursing and Patient Services Director Dr Rachel Quibell Palliative Care Lead Michelle Muir Lead Nurse, Palliative Care Teresa O Donnell Lead Nurse, End of Life and Bereavement Care Chris Eddy Head of Patient Services 14 th July 2015

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3 THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST END OF LIFE AND PALLIATIVE CARE UPDATE SECTION 1: PALLIATIVE CARE UPDATE 1.1 INTRODUCTION / BACKGROUND Palliative Care is an approach that improves the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO 2015). Assessing needs and providing general Palliative Care is the responsibility of all Clinical Staff in the Trust. In addition, the Trust has a Specialist Palliative Care Service (SPCS) that educates staff to ensure general Palliative Care assessment and management is of a high standard, whilst providing additional expertise and support for patients/families with more complex problems. The specialist service is highly successful, and referrals are rising year on year. 1.2 SUCCESSES i) The Specialist Palliative Care Service on behalf of the Trust has successfully delivered on the Palliative Care Strategy The new Palliative and End of Life Care Strategy is ready for ratification by the Board. (Appendix1) ii) The Specialist Palliative Care Service has been pro-active in seeking soft funding and new substantive funding for a number of innovative projects, in order to test service developments or scope service improvements. These include: a. The Specialist Palliative Care service delivers a Rapid Assessment service to enable a 1-hour crisis response in the Community and at the RVI 7 days a week. This was initially funded using readmissions avoidance monies but due to its success has now been made substantive. In the 9 months from September 2014 of the 63 patients seen only 3 ended up as hospital admissions saving an estimated 154,860. b. The Specialist Palliative Care Allied Health Professional (AHP) project: using four years funding from Macmillan, two Physiotherapists, 1.8 Occupational Therapists and 0.5 Therapy Assistants have been nominated again this year for a Macmillan Excellence Award now 3 years running. They are gaining increasing national recognition and have been published for their work in the development of a Palliative Care specific AHP validated clinical outcome measure. They have demonstrated excellent outcomes and patient and carer feedback. Funding for this service runs out in 2015, this represents a significant risk to patient care. New substantive 1

4 specialist AHP posts have been created in the locality using the NUTH model, and the Trust is at real risk of losing the staff we currently have. c. The Specialist Palliative Care service has secured funding for 1 year (2015) to progress with the Primary Care Standards project, to work alongside primary care teams to embed and support minimum palliative care standards within the community. Funding for this project carries risk, only being for one year, when evidence and experience demonstrates the need for ongoing support for Primary Care. iii) Specialist Palliative Care for patients with non cancer diagnoses has continued to rise. Integrated working with the adult Cystic Fibrosis team at the RVI and the Cardiothoracic Transplant Unit at FRH has been recognised nationally and internationally as ground breaking. The work embedding Medical, Nursing and AHP Palliative Care Specialists alongside respiratory Physicians, Cardiothoracic Surgeons, Nurses, AHPs and Psychologists has been presented at national conferences and resulted in a number of publications and national acclaim. iv) The Specialist Palliative Care service has successfully been selected to take part in the National Palliative Care Funding Review Pilot, and the PHE National Palliative Care Clinical Data Set Pilot. Inclusion in both of the pilots will allow the trust to influence and shape National policy, and commissioning. Both of these pilots run in year v) The Specialist Palliative Care service has significantly contributed to the recent successful review undertaken by CGARD of the quality of End of Life care, ahead of an expected CQC inspection later in An action plan is in place to further improve on this. 1.3 RESOURCE ISSUES The main risk to the Specialist Palliative Care Service and hence patient care is the end of funding in 2015 of the Specialist Palliative Care AHP service. Submission of a business case in 2014 was unsuccessful, and submission of a further business case in August 2015 is planned Referrals The number of complex referrals the Palliative Care Service receives continues to rise. A robust triage system ensures that only the most complex cases are seen by the service whilst ensuring support and advice for generalist services for less complex cases. The two areas where activity has increased are Freeman Hospital site (FRH), which is in part due to the innovative work into Cardiothoracic Transplant Unit, and Northern Centre for Cancer Care (NCCC) where the Specialist Palliative Care Service are increasingly expected to respond to urgent complex patient need within outpatients and radiotherapy planning areas. 2

5 Figure Non Cancer Palliative Care originated in Cancer Care, but the value of a Palliative Care approach is being increasingly recognized in life-limiting Long-Term Conditions (LTCs) and is advised in National management recommendations for many LTCs. Non-cancer Palliative Care is often more complex; it involves planning for uncertainty as end of life trajectories are more difficult to predict. Figure 2 shows the trend in non-cancer referrals to the SPCS; this shows that non-cancer referrals are growing at a faster rate than cancer referrals. Excluding NCCC the % of non cancer referrals has increased from 12% to 26% in the last 4 years. This is largely due to the proactive work of the SPCS identifying unmet need. Cancer and Non Cancer Referrals Numbers of referrals Year Non Cancer Cancer Figure 2 3

6 The growing work with patients with non cancer diagnoses is significantly underpinned by the SPCS AHP team. The national recognition achieved by the work with the Cystic Fibrosis team and Cardiothoracic also reflects the work done by the AHPs. Loss of their service significantly risks quality of care and education. The Specialist Palliative Care Service provides extensive training and education across the Trust. The service is working in close collaboration with the Trust Education Group to support and prioritize End of Life care education and to develop a Trust wide Communication strategy. 1.4 SUPPORTING END OF LIFE CARE The Specialist Palliative Care Service continues to support the Lead Nurse for End of Life and Bereavement by working in a collaborative way with overlapping work streams, in particular education around End of Life Care. 1.5 RISKS AND RISK MITIGATION i) Temporary Posts: Several of our projects have been highly successful but cannot be maintained because staff can only be appointed on short-term contracts. (AHP Project, Primary Care Standards, Community Care Home project) This has resulted in loss of the palliative care nurse linked to the Community Care Home project, the loss of a specialist physiotherapist and is currently threatening the remaining AHP service. Loss of staff risks undermining the successes gained in the projects, a reduction in the quality of patient care, and a loss of the reputation of the trust. The end of funding of the AHP posts with their expertise gained in the trust, comes at a time when a neighbouring organisation is seeking to recruit such expertise. ii) Service Pressures: Increasing referrals evidences the requirement for the service, but the current service pressures continue to grow. This will require further commissioning across all referring CCGs. iii) Service inequality: New substantive funding to continue the work started with the readmissions monies has allowed 7 day working in both the RVI and community teams, however this has now led to an inequality of service, as FRH team and NCCC team are not resourced to work 7 days. This will require further commissioning across all referring CCGs. This issue will be compounded in the autumn by the publishing of a new National Specialist Palliative Care Service Specification, where it is expected gaps will be identified between our current resource and the national requirements. 1.6 SUMMARY The Trust is providing a skilled, enthusiastic and innovative Palliative Care Service with excellent patient outcomes, positive staff feedback and a growing National profile. 4

7 The service is increasingly consulted for both cancer and non-cancer problems; the level of complexity of referrals is rising as well as total referrals. This level of clinical service, linked with the inequity of current commissioned service must be addressed and needs additional resource. 1.7 RECOMMENDATIONS To i) receive the report ii) note the success of the service iii) note the pressures the service is under, and the risk to patients and to reputation should the service fail iv) support the resubmission of a business case for the Allied Health Professional service and v) to ratify the Palliative Care Strategy SECTION 2: END OF LIFE CARE 2.1 BACKGROUND This section of the paper provides the Board with an update on important developments in the delivery and review of end of life care across hospital and community services since the national withdrawal of the Liverpool Care Pathway and the subsequent developments form the Leadership Alliance for the Care of Dying People (LACDP 2014). In July 2013, Baroness Neuberger s independent review of the Liverpool Care Pathway (LCP) recommended that the LCP be withdrawn nationally in July Newcastle upon Tyne Hospitals NHS Foundation Trust was compliant with this recommendation. Since July 2014, the Trust s guidance on the management of end of life care is based on the priorities outlined in the document One Chance to Get it Right. This approach to end of life care was developed by the Leadership Alliance for the Care of the Dying Patient (LACDP 2014) and focuses on the needs and wishes of the dying person and those closest to them, in both the planning and delivery of care wherever that may be. 2.2 SUCCESSES i) The first End of Life Care Strategy has been successfully delivered. The new Palliative and End of Life Care Strategy is ready for ratification by the Board. (Appendix 1) ii) Excellence in End of Life Care. a) National End of Life Care Audit-Dying in Hospital The Trust scored higher than the national average in 9 of 10 Key Performance Indicators for clinical care and achieved 4 out of 7 Key Performance Indicators for organisational data. Improvements have been made in all key areas but lack of 24 hour face to face service remains a gap. The Trust is participating in the National End of Life Care Audit-Dying in Hospital again in b) Bi-annual audits of end of life care are conducted across the acute and community setting, to monitor standards. Views of relatives and staff 5

8 providing end of life care have been included in the data collection process. Audit results continue to provide evidence of compliance with the priorities for care outlined in One Chance to Get it Right. Carer feedback is very positive. iii) Leadership. End of Life care services are well led. The Trust has invested in the role of Lead Nurse for End of Life and Bereavement Care and the Lead Clinician for End of Life Care, these positions are now substantive, demonstrating a commitment to the ongoing provision of excellent end of life care in the Trust. Engagement with services in the Trust exists through Palliative and End of Life Care Strategy Group. iv) There has been a successful systematic approach to the phase-out of the Liverpool Care Pathway since July 2014, with supporting guidance documentation disseminated into all clinical areas and community practices underpinning excellent care to date. v) End of Life Support Workers Pilot. This pilot was initiated from Winter Pressures monies. This has allowed End of Life Support Workers to practically support carers and relatives of patients at the end of life in addition to care already delivered by ward teams. This innovative project has received excellent feedback and there is ongoing dialogue with Macmillan to fund this project temporarily. vi) CGARD recently undertook a peer review of the quality of End of Life Care, ahead of an expected CQC inspection later in The report showed Good across 4 domains and Outstanding in the Caring Domain. An action plan has been developed to further improve on these findings. 2.3 CURRENT PRIORITIES i) Care for the Dying Patient Document. Trust staff contributed to the development of a regional document. This individualised plan of care for patients in the last days or hours of life is based on the priorities for care described by the LACDP. Following a successful pilot study, the Care for the Dying Patient document is currently being introduced gradually across the Trust. Palliative Care teams are supporting the End of Life Lead Nurse and Lead Clinician with the introduction of the document in clinical areas and the delivery of education to clinical staff. The introduction of the document across the whole Trust will be a lengthy process. Until this process is complete there will be on going audit of end of life care in all settings. ii) A breeze on-line training package has been created for all clinical staff. This became mandatory from April Face to face education continues to be provided across clinical groups in the Trust supported by the Specialist Palliative Care Service. iii) An alert system linked to e record now exists. This alert triggers ward reviews by the Chaplaincy Team and the End of Life Lead Nurse as appropriate. 6

9 2.4 RISKS AND MITIGATIONS The introduction of the Care of the Dying Patient document as an individualised plan of care across all areas will take time and resource. Until it has been introduced in all clinical areas there will be an inconsistency in the documentation used to recorded end of life care SUMMARY It is to be noted the recognition the Trust has given to the excellent End of Life care by the substantive funding of the Lead Nurse and Lead Clinician roles. Development and innovation has seen robust processes developed to ensure maintenance of this safe and quality care across the community and acute settings. 2.6 RECOMMENDATIONS To i) receive the report ii) note the successes of End of Life Care iii) note the risks to quality of care during this transition period and accepting the local and national audit findings, highlighting areas of good practice and areas for improvement and iv) to ratify the Palliative and End of Life Care Strategy Mrs Helen Lamont Nursing and Patient Services Director Dr Rachel Quibell Palliative Care Lead Michelle Muir Lead Nurse, Palliative Care Teresa O Donnell Lead Nurse End of Life Care Chris Eddy Head of Patient Services 14 th July

10 Newcastle upon Tyne Hospitals NHS Foundation Trust 8 Appendix 1 STRATEGIES FOR PALLIATIVE CARE and END OF LIFE CARE Introduction: End of life Care has been defined as care for people who are 'approaching the end of life' when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with: advanced, progressive, incurable conditions, general frailty and coexisting conditions that mean they are expected to die within 12 months, existing conditions if they are at risk of dying from a sudden acute crisis in their condition and life-threatening acute conditions caused by sudden catastrophic events. (GMC 2010, NICE 2011) It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO 2015). Although there is overlap of patients in need of palliative care and end of life care, the services are different and complementary; frequently one approach is required without the other. Specific key areas provided by palliative care include symptom management for patients whose prognosis is longer than 12 months, based on need not prognosis. Likewise there are key areas within End of Life care that do not involve palliative care, including unexpected death, bereavement care, and identification and planning for end of life care for people with long term conditions who have no palliative care needs. National directives include both end of life care and palliative care service recommendations and therefore the two strategies are embedded in this paper. National directives National directives will inform the development of Newcastle upon Tyne Hospitals NHS Foundation Trust (the Trust) end of life and palliative care services and the ways in which they interface with the services of other NHS and voluntary providers outwith of the Trust, underpinning service standards and informing the trust s discussions with commissioners. Such directives include: a. End of Life Care Quality Standard for Adults (NICE, 2011) recognises that end of life care is an integral part of every health and social care worker s role. End of life care is described as the care of people who are likely to die in the next 12 months.

11 b. Outcomes Strategies and National Service Frameworks for Coronary Heart Disease (2000 and ), Older People (2001), Long term (neurological) Conditions (2005 and ), Chronic Kidney Disease (2005), COPD (2011), NICE Quality Standards for COPD (QS , Dementia (QS1 2010) and COPD (QS ), all describe palliative care as integral to condition management; this includes general principles of palliative care within the team treating the condition, and access to specialists in palliative care for clinical advice, patient support and staff training/support. c. NHS EoL Care Programme: includes the DH End of Life Care Strategy (2008), which recommends a whole-systems approach to identifying the needs of people approaching the end of life, and a commissioning strategy that enables their preferences for place of care to be met where practicable. The Route to Success series offers a framework for delivering excellence in EoL care in a variety of settings, including in acute hospitals and in care homes. d. QIPP: the NHS EoL Strategy requires patients to be offered the opportunity to express preferences about their end of life care. Implementing this requires staff to have sensitivity and specific training, and a method of communicating across care settings to ensure patients preferences are respected, including the preference not to embark on such discussions. This is embedded in the QIPP EoL work-stream. e. Mental Capacity Act (2005) describes how individuals preferences should be respected when deciding priorities for care. The Deciding Right programme (2012) has been adopted by the trust and will be used as a framework for decision-making, including recognising how to manage complex decisions when patients lack capacity. f. IT information standard IBS 1580 (2012) describes the standards for electronic clinical databases, which will be the core of shared clinical information. Nationally, Electronic Palliative Care Co-ordination Systems (EPaCCS) are a priority. Regionally, the EoL Network derived from the Darzi review (2008) is developing an enhanced Summary Care Record for End of Life care to meet this need and NUTH IT leads are involved in the strategic planning. g. The Independent Review of the Liverpool Care Pathway More Care, Less Pathway (2013) identified recommendations for services to ensure high quality end of life care provision. These were accepted in full by the Government and require implementation. h. The Leadership Alliance for the Care of Dying Person published One Chance to Get it Right (June 2014) which identified five priorities of care for Dying people. These priorities must be embedded in all clinical practice. 9

12 i. The Health Select Committee Report (March 2015) has made recommendations which reiterate the requirements of the Five Priorities of Care,the need for increased access to palliative care services, improved resources in the community, and better leadership. j. The NHS Ombudsman s report on failures in EoL Care Death without Dignity May 2015 highlights the ongoing failures in care at end of life and confirms the work still to be done. 2. Local Drivers will include the continued service planning and collaboration with NHS NE Strategic Network, local provider forums, CQUIN indicators and the CCG End of life Lead Clinicians. 10

13 Newcastle upon Tyne Hospitals NHS Foundation Trust STRATEGY FOR PALLIATIVE CARE Newcastle upon Tyne Hospitals NHS Foundation Trust s successful implementation of its palliative care strategies , and has established a multidisciplinary specialist palliative care service covering primary and secondary care in Newcastle. In 2011 a four year grant from Macmillan Cancer Relief enabled the Trust to establish specialist posts in rehabilitation. This innovative service has achieved national acclaim and substantive funding is sought. In 2014, a specialist palliative care rapid assessment team was established, initially as a one year pilot based in the community and the Medical Assessment Suite at the RVI. This is a 7-day service which responds rapidly to patient need to prevent unnecessary admission or to facilitate rapid discharge to the patient s preferred place of care. This has now received substantive funding. The delivery of the Trust Palliative Care Strategy is fundamentally driven by the Specialist Palliative Care Service (SPCS), working alongside all services in the Trust, both acute and community to enable all staff to deliver excellent patient care. For children and young people there is now a separate Palliative and End of Life Strategy. Palliative Care Strategy Strategic Aims: Strategic Aims: 1. Staff throughout the Trust will offer prompt identification and effective management of physical, emotional, social or spiritual distress arising as a consequence of physical illness, regardless of diagnosis or illness trajectory, with equitable access for all patients. 2. This care will be available at the point of need at any time during the patient s management pathway, and the Trust component should be provided seamlessly, in coordination with care provided by other organisations, in hospital and in the community, to enable fully integrated care. 3. Palliative care principles and practice will be an integral part of clinical knowledge and skills across the Trust, facilitated and supported by the SPCS when necessary. 4. The SPCS will respond in a timely manner to contribute to the management of a patient s symptoms either by providing clinical advice to the caring team, or by including the patient in the palliative care service caseload, contributing to patient assessment, advising on management and evaluating outcomes, until symptoms are resolved or the patient is transferred outside the Trust s care. Liaison and handover will ensure the excellent palliative care of the patient and family is maintained. 5. The Trust SPCS will work with Childrens Services to support young adults 11

14 transition into Adult Services. 6. The Trust will work with commissioners and local partners in service provision to ensure that a comprehensive, cost-effective and high quality SPCS is available when required, according to the needs of the population served across the North of England and planned in line with national guidelines. Core values of Newcastle upon Tyne Hospitals NHS Foundation Trust Specialist Palliative Care Service: The SPCS exists to enable planning, development and delivery of excellent palliative care across the trust, partly by delivering a specialist clinical service and partly by facilitating skills and service development in the wider Trust workforce. The Trust s SPCS core values are aligned with Trust corporate values and as such the team exists to enable a high quality, evidence-based service to be provided in a timely manner, regardless of diagnosis or care setting within the Trust. The service will seek to be pro-active in identifying and addressing: Holistic assessment and planning of patient centered care: To place our patients at the heart of everything we do The educational needs of Trust staff in hospital and community, to raise the level of knowledge and skill with which they offer basic palliative care and facilitate appropriate referrals for specialist attention; Partnership working with Primary Care Teams to support them in identifying patients with palliative care needs, and to provide them with clinical advice, educational support. The identification of patients with palliative care needs. Service development and business opportunities. Work in partnership with other local providers to ensure integrated patient care. Core components of the service The Trust will have a multi professional team of palliative care specialists that offers expertise across physical, emotional, social and spiritual dimensions of care. The core membership of the service will include specialist nurses, doctors, specialists in rehabilitation, social workers and practitioners with expertise in psychological assessment and care, with administrative support. Membership will also include specialists in other key roles as appropriate which may include chaplaincy and pharmacy. A new national Specialist Palliative Care Service Specification is under consultation and is due to be announced in Core membership may need to be adapted when this is announced. To maintain expertise, palliative care specialists will have access to clinical supervision and CPD, including opportunities for individuals to build areas of more specialised knowledge and practice for the benefit of the whole service, in line with the Trust s strategies for palliative care and the Trust s Professional Behaviours Framework. 12

15 The service will seek to develop integration with other providers of care beyond the Trust, including other specialist palliative care providers and Nursing Homes, to ensure that a holistic and comprehensive service, tailored to an individual s needs, is maintained at an appropriate level throughout their illness. This integration would seek to reduce inappropriate hospital admission and length of stay, facilitate advance care planning, and maintain the best quality of life for a patient in the setting of their choice, for as long as possible. This will include contributing to regional work to establish shared electronic clinical records accessible to Trust staff, and to staff in collaborating organisations, at the point of need. Service user feedback and experience will contribute to service planning, in line with Trust policy, and will feed into trust-wide user experience surveys. Key outcome areas: 1 Patient Experience: By working in collaboration with all key stakeholders including patients and families, the wider Trust workforce will provide excellent patient centred care. The SPCS will contribute to the evaluation of this care. The SPCS will also evaluate the patient and carer experience of the specialist care provided. 2 Service Delivery: By working in liaison with clinical teams responsible for the management of patients with chronic and/or life-limiting conditions, the SPCS will continue to support clinical teams in both hospital and community settings in early recognition of problems amenable to palliative care interventions, and facilitate symptom assessment and management by the patient s usual clinical team. This will be backed up by access to specialist palliative care consultations when necessary. Optimum symptom management may rely on specialist knowledge of the underlying condition, therefore close integrated working between condition-specific services and the palliative care service is crucial. The SPCS will continue to develop integrated working with specialist and primary care teams to ensure best possible support for patients with advanced disease, and ensure equitable access to specialist palliative care services as required. These service developments will continue to be benchmarked against the national picture. 3 Safe, effective, harm free care: In line with trust clinical governance policy, the quality of services will be monitored via clinical audit, feedback from incidents, complaints, and patient/ carer experiences. Trust staff will have access to palliative care education relevant to their roles and responsibilities. Commissioning The SPCS on behalf of the Trust will have continuous dialogue with Commissioners in identifying the services required to meet the needs of the population. The SPCS on behalf of the Trust will seek opportunities to influence and contribute to palliative care national work streams. SPCS will work with all key stakeholders to support existing services and help develop new service delivery methods to promote ever-improving palliative care and to reduce inequity of service provision. 13

16 Service Development proposal 1. Newcastle upon Tyne Hospitals NHS Foundation Trust will ensure SPCS services are compliant with national recommendations in line with the proposed national SPCS specification to include AHPs, psychology and social work. SPCS will seek to provide 7 day working across all teams. This will require additional substantive funding. 2. The SPCS will continue to develop integrated working between SPCS and clinical teams in hospital and community to meet the palliative care needs of patients and families/carers. This will include working with other local palliative care providers and Nursing Homes. 3. SPCS on behalf of commissioners will work with primary care to further embed the use of Primary Care Standards for patients with palliative care needs in the community. 4. SPCS will work with Childrens Services to provide seamless care as young adults transition into Adult Services. 5. SPCS on behalf of the Trust will continue to contribute to Trust-wide audit as well as continue to undertake internal audit, intervention and re-audit. 6. Specialist Palliative Care leads will seek opportunities to participate in local and national research to enhance evidence based care. 7. SPCS will work with the Trust and commissioners to agree appropriate CQUIN indicators to improve quality of patient care. 8. SPCS on behalf of the Trust will continue to review patient pathways and identify and act upon any gaps in care provision. 9. SPCS, in conjunction with other services in the Trust, will participate in future CQC Inspections and advise the Trust to act on any recommendations. 10. SPCS will continue to collaborate with the Trust Education Group (TEG) to scope and develop education initiatives around palliative and end of life care, in order to ensure excellent palliative care across the Trust and to seek out business opportunities. Rachel Quibell Lead Clinician for Palliative Care, NuTH NHS FT Michelle Muir Lead Nurse Palliative Care, NuTH NHS FT On behalf of Newcastle upon Tyne Hospitals NHS Foundation Trust Palliative Care Strategy Group and Specialist Palliative Care Service May

17 Introduction: Newcastle upon Tyne Hospitals NHS Foundation Trust End of Life Care and Bereavement Support Strategy Care for dying people is a component of the trust s over-arching activity; care at the point of death in only one part of care of the dying; maximising independence and social participation for people whose life expectancy is challenged by health problems is as important and requires active collaboration between patients, families and provider organisations in health and social care. This strategy describes Newcastle Upon Tyne Hospitals NHS Foundation Trust s intention to maintain and further develop excellent and timely care for patients whose clinical status suggests that they are in the last months of life and for those whose fatal illness is sudden and/or unexpected. Since the last strategy the Liverpool Care Pathway for the dying patient was discontinued and the Trust services have been pivotal in developing and piloting regional guidance and documentation to support care in the last days and hours. This strategy describes an aspiration to ensure that the five priorities for Care of the Dying person are embedded in clinical practice (LACDP 2014).This includes the care and support of families during and immediately following a death and includes consideration of support in decision-making around organ/tissue donation, post mortem examination and in explanation of the coronial process when appropriate. End of Life Care Strategy Strategic Aims: Strategic Aims 1. Staff throughout the Trust will be able to identify patients approaching end of life, regardless of diagnosis, in a timely way, and will offer prompt and effective management of physical, emotional, social or spiritual distress. 2. Staff throughout the trust will offer prompt and effective management of physical, emotional, social or spiritual distress of patients whose death is sudden or unexpected. 3. Care for dying people and their families and carers will be holistic and sensitive to the patient s and family s needs and values regardless of diagnosis or clinical setting. 4. Hospital staff responsible for inpatient and/or outpatient care will ensure that a patient s Primary Health Care Team is informed when clinical status suggests that the patient is eligible for inclusion on their Primary Care Team s Palliative Care register. 5. Planning for future eventualities is a shared responsibility of the health care community. Individuals who so wish will be given opportunities to explore options for future care once cure is no longer a realistic possibility, in line with NICE guidance. This will include ensuring that Trust staff who 15

18 undertake these sensitive discussions have access to appropriate communication skills education, clinical supervision and personal support. 6. The Trust will participate in care planning and co-ordination that may include for example: Emergency Health Care Plans, Resuscitation status, preference statements for place of care/death, Advance Decisions to Refuse Treatment, Advance Statements. This information, including preference not to discuss, will be accessible at point of clinical assessment in all health care domains to enable care to be delivered in accordance with patients expressed preferences, in line with NICE guidance. 7. Staff throughout the trust will be able to offer prompt, effective, culturally sensitive Care after Death in a dignified manner. This will include timely verification and certification of the death along with ensuring that all relevant deaths are reported to the Coroner in a timely fashion, and that families are communicated with in a sensitive manner. 8. The Trust will ensure that generalist and specialist services providing care for people approaching the end of life and their families and carers have a multidisciplinary workforce sufficient in number and skill mix to provide high quality care and support at any time it is required. 9. The Trust will ensure that the appropriate bereavement care will be provided in line with the Trust Bereavement Strategy. Core Values of NUTH End of Life Care The values of Trust staff are aligned with Trust corporate values to enable the provision of high quality holistic, evidence-based care, in a timely manner, regardless of diagnosis or care setting within the Trust. End of Life Leads will be pro-active in identifying and addressing service needs to ensure: Holistic patient centered care: To place our patients at the heart of everything we do That patients identified as being at end of life will benefit from high quality collaborative and cross boundary care that seeks to meet their physical, emotional, social and spiritual needs proactively. That people in our care, whose death is sudden or unexpected, will experience sensitive and skilled end of life care. That staff within the Trust will continue to work in partnership with all key stakeholders to support those who are approaching the end of their life (last 12 months). All deceased will be cared for in a culturally sensitive and dignified manner, and communication with family and carers will be delivered with respect and compassion. That staff who provide care for people approaching end of life and their families will have access to education, clinical supervision and support to provide excellent end of life care and sensitive communication with distressed people, while reducing the risk of work-related stress for staff. That End of life National directives will be complied with. 16

19 Core components of End of Life Care The Trust will have a workforce that offers expertise across physical, emotional, social and spiritual dimensions of end of life care in line with national directives. Services will continue to develop relationships with other stakeholders, to ensure that a holistic and comprehensive service, tailored to an individual patient s needs, is maintained at an appropriate level throughout their illness. This networking would seek to reduce inappropriate hospital admission or length of stay, facilitate advance care planning, and maintain the best possible quality of life for a patient in the setting of their choice, where possible. This will include contributing to regional work to establish shared electronic clinical records that will be accessible to Trust staff, and to staff in collaborating organisations, at the point of need. Service user feedback will contribute to service planning, in line with Trust policy. Key outcome areas: these are the domains of the NHS End of Life Care Strategy: 1 Identification of end of life 2 Discussions at the end of life 3 Co-ordination of care 4 Delivery of high quality care 5 Care in the last days of life 6 Care after death 7 Specialist Palliative Care Commissioning The End of Life Leads on behalf of the Trust will have continuous dialogue with Commissioners in identifying the services required to meet the needs of the population. The End of Life Leads on behalf of the Trust will seek opportunities to influence and contribute to end of life national work streams. End of Life Leads will work with all key stakeholders to support existing services and help develop new service delivery methods to reduce inequity of service provision. Service Development proposal 1. The Trust will continue to take part in the National Care of the Dying in Hospitals annual audit, and End of Life Leads on behalf of the Trust will develop a robust action plan based on the recommendations of the audit. 2. End of Life Leads will work with the Trust and commissioners to agree appropriate CQUIN indicators to improve quality of patient care. 3. End of Life Leads on behalf of the Trust will continue to lead on the implementation of NHS North East care for the dying patient documentation. 4. End of Life Leads will seek opportunities to participate in local and national research to enhance evidence based care 17

20 5. NuTH will continue to influence and contribute to the various EOL work streams nationally and within the region e.g. advance care planning, EHCP, GP Palliative care registers, Deciding Right and DNACPR issues. 6. NUTH will work with NHS NE to develop an Electronic Palliative Care Coordination Systems (EPaCCS)in line with National Palliative Care/EoL strategy for all patients on GP palliative care registers. 7. End of Life Leads will continue to report to the Director of End of Life Care and the board as required and additionally if organisational risks are identified. 8. EoL leads will further develop the end of life team to include previously scoped support worker role as substantive additions to the team. 9. Working with all key stakeholders Trust staff, supported by SPCS and EoL Leads, will seek to reduce unnecessary end of life crisis admissions, and to ensure timely transfer of patient s to their preferred place of care, where possible, whilst ensuring patients have access to appropriate care from NUTH as required. 10. End of Life leads and SPCS will support the Trust Bereavement Strategy to ensure appropriate care for bereaved families. Rachel Quibell Lead Clinician for End of Life Care Brigid Purcell Lead Nurse End of Life/Bereavement Care On behalf of Newcastle upon Tyne Hospitals NHS Foundation Trust Palliative Care Strategy Group 18