Policies, Procedures, Guidelines and Protocols

Transcription

1 Policies, Procedures, Guidelines and Protocols Document Details Title Palliative and End of Life care in the last years of life. A Strategy for Adults Trust Ref No Local Ref (optional) Main points the document End of life care in the community setting covers Who is the document All staff aimed at? Owner Cath Molineux Approval process Who has been consulted in the development of this policy? End of Life operational group members Quality and Safety Committee SCHT Board Approved by SCHT Board (Committee/Director) Approval Date 30 th March 2017 Initial Equality Impact N/A Screening Full Equality Impact N/A Assessment Lead Director Steve Gregory. Director of Nursing and Operations Category Strategy Sub Category Review date 30 th March 2020 Distribution Who the policy will be All staff and partner organisations distributed to Method SCHT website, introductory letter and Strategy sent to all staff groups and partner organisations. Trust Newsletter Keywords End Of Life, Palliative Document Links Required by CQC Yes Other Amendments History No Date Amendment 1 30 March 2017 New policy

2 Palliative and End of Life care in the last years of life. A Strategy for Adults

3 Table of Contents Page Executive summary 3 Introduction 3 Background 3 Definitions of the last years of life in Shropshire 5 Our Vision and Strategic aims 6 National context and drivers 6 Local context- where are we now? 9 What we do well 18 Gaps and deficits 21 Action plan 23 Implementation and Milestones 26 Key outcomes and measurement process 27 Conclusions and summary 33 Glossary 33 References 34 Appendices 35 Appendix 1 Ambitions for Palliative and End of Life Care (A national framework for local action ) Appendix 2 The GSF Prognostic Indicator Guidance (An early indicator for people nearing the end of their life) Appendix 3 Adult Strategy Plan on a page Appendix 4 COPD Decision Tool

4 Executive Summary Welcome to the Palliative and End of Life Care in the last years of life, an Operational Strategy for Adults. This strategy embraces the concepts, values and principles that are set out in Shropshire Community Health NHS Trust s (SCHT) Clinical Strategy and Quality Strategy ( ). The strategy sits alongside our End of life strategy for Children and Young People and the New-born.There is an overarching statement which provides the connection to both strategies SCHT provides Palliative and end of life care in the last weeks, days, hours of life to all residents of Shropshire within our Integrated Community Teams, our four Community Hospitals and our Specialists Services (such as the Respiratory Team) supported by the specialist palliative care team based at Severn Hospice and Shrewsbury and Telford Hospitals NHS Trust (SATH). The main focus of this strategy is to have an upstream shift from the last few weeks, days and hours of life to at least the last year of life. What we want to achieve is set out in our strategic vision: Shropshire Community Health Trust Vision: Every adult in Shropshire, Telford and Wrekin is supported by high quality, person centred end of life care, which is recognised and delivered early and collaboratively. Meeting the individual wishes and preferences of those in the last year(s) of life and those who are important to them. We know that there are identified groups of patients in SCHT that we already care for that we can start the early conversations and planning to explore their wishes and preferences. These services and care provision are areas that can be built upon and continue to develop in order to achieve the vision for end of life care. SCHT provides end of life care in both rural and urban areas which presents with differing approaches and issues. Approaches to end of life care in these areas will differ from those in the more urban areas, initiatives such as compassionate communities; involvement of the voluntary sector will need to be considered. The neighbourhood working model that is emerging from the Sustainability and Transformation plan for Shropshire will need to put these differing issues for End of life care in the rural and urban areas at the forefront. We already do things well, this depicts the areas where we are making good progress and will form the foundations to build upon in order to meet the strategic vision for end of life care within SCHT The gaps and deficits identified in this strategy will inform the operational action plan in order to meet the strategic vision however some of the gaps and deficits identified are not within the remit of SCHT to deliver. The gaps and deficits identified will form the operational delivery action plan. The implementation of these actions are key in delivering this strategy and achieving the vision over the next 3 years.

5 The key action for Shropshire Community Trust is commencing care and support at least one year prior to a person s death, identifying their wishes and preferences for care as their condition changes towards death. Introduction Welcome to the Palliative and End of Life Care in the last years of life, an Operational Strategy for Adults. This strategy embraces the concepts, values and principles that are set out in Shropshire Community Health NHS Trust s (SCHT) Clinical Strategy and Quality Strategy ( ). The strategy sits alongside our End of life strategy for Children and Young People and the New-born.There is an overarching statement which provides the connection to both strategies.this gives a clear picture of the common themes in both children and adults services. This connection enables us to provide compassionate and effective care to people at the end of their lives and to support their families and carers. The main focus of this strategy is to have an upstream shift from the last few weeks, days and hours if life to at least the last year of life. By doing this we expect to achieve better outcomes and experience for patients/families/carers and staff. In order to achieve the strategic vision and direction of travel, consistency in care and practice has been identified and will be addressed through implementation of this strategy. What this strategy doesn t address is sudden/traumatic deaths which include: suicide, road traffic accidents, drowning, falling, undiagnosed advanced terminal cancer, heart attacks and murder. Direction for this is addressed later in the strategy. Our aim is to be the best local provider of high quality, consistent, innovative health services near people s homes, working closely with partners so people receive well-co-ordinated effective care. Providing Palliative and End of life care is part of our everyday working lives within the Trust from the new born to the older frailer person. Background The Care Quality Commission (CQC) inspection visit to SCHT in March 2016 had a focus on end of life care, it stated in the areas for improvement that the trust must develop and implement an overall vision and strategy for end of life care services. This has been an essential driver for the trust to transition end of life care from area for improvement to getting to good and beyond. In order to deliver high quality care we rely on close partnership working with many organisations from informal carers, voluntary sector and our GP colleagues through to secondary care. National and local data demonstrates that the majority of people die in hospital even though this may not be where they chose to spend their last hours and days. Source: Public Health England. End of life profiles (2015): The whole health and social care economy End of Life Group, which has representation from all partner organisation, is attempting a direction of travel based on the following document (Appendix 1):

6 Ambitions for Palliative and End of life care: A National Framework for local action (National Palliative an d End of Life Care partnership 2015). Which set out the 6 domains which have been drawn into all aspects of this strategy: Each person is seen as an individual Each person has fair access to care Maximising comfort and wellbeing Care is co-ordinated All staff are prepared to care Each community is prepared to help This document poignantly states: End of life care is care that affects us all, at all ages, the living, the dying and the bereaved. It is not a response to a particular illness or condition. It is not the parochial concern of a particular group or section of society. We cannot defeat death. However we can change the way we talk about death and dying and bereavement and prepare, plan, care and support those who are dying and the people close to them. We must strengthen our ability to provide care whatever the circumstances of our dying. SCHT provides Palliative and end of life care in the last weeks, days, hours of life to all residents of Shropshire within our Integrated Community Teams, our four Community Hospitals and our Specialists Services (such as the Respiratory Team) supported by the specialist palliative care team based at Severn Hospice and Shrewsbury and Telford Hospitals NHS Trust (SATH). Much of this care is delivered by generalist teams of staff with appropriate support from specialist palliative care teams across primary and secondary care. Definitions of End of Life Care and Palliative Care There are a number of definitions of both Palliative and End of Life Care. The following definitions encapsulate the concepts, are widely used and have been adopted for the purposes of this strategy: End of Life Care is care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. Patients are approaching the end of their lives when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours and days) and also those with: Advanced, progressive, incurable conditions General frailty and co-existing conditions that mean they are expected to die within 12months Existing conditions if they are at risk of dying from a sudden acute crisis in their condition Life threatening acute conditions caused by sudden catastrophic events Reference: General Medical Council (2010).

7 This definition is also used in the National Institute for Health and Care Excellence ( NICE) Quality Standards for End of Life Care for Adults (2011). The World Health Organisation (2002) definition of Palliative Care which is widely adopted states: Palliative Care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Strategic Vision Every Adult in Shropshire, Telford and Wrekin is supported by high quality person centred care, which is recognised and delivered early and collaboratively. Meeting the individual wishes and preferences of those in the last year(s) of life and those who are important to them. Strategic Aims Everyone counts- Those people who are approaching their last year(s) of life will be recognised in a timely way. As their condition changes, planning in advance their needs wishes and preferences with a regular review Commitment to Quality- Getting to good and beyond will be achieved by addressing all the issues and more set out by the CQC, embracing the essential standards. Improving Lives- Ensuring a good life journey towards the person s death and consistent and compassionate care after death for carers and families Working together for patients- End of life care is everyone s business. High quality personcentred care delivered early and collaboratively is a high value intervention for the person, the Trust and our partners. Compassionate Care- staff will be enabled to undertake the important conversations and have time to care for the person who is in the last years of life and those who are important to them. Respect and dignity- All people who are in the last years of life and their families and carers will have individualised care plan recognising their values and beliefs, wishes and preferences. National context and drivers One of the key and first documents to provide a framework for End of Life Care is the End of Life Strategy: Promoting high quality care for all for adults at the end of their life (DH 2008). This strategy produced the End of Life Care Pathway (figure 1) which sets out all the key elements for good end of life care which reflects the direction of travel for this strategy. The current approach by SCHT is mainly focussed on step five.

8 Figure 1: End of Life Care Pathway (DH, 2008)

9 In July 2013 there was an independent review of the Liverpool Care Pathway (More Care, Less Pathway) by Baroness Julia Neuberger. The review recommended that the use of the Liverpool care Pathway is phased out over the following 6-12 months. Following this, the Leadership Alliance for the Care of Dying People produced the document One Chance to Get it Right in June This set out five key priorities which makes the person and their family and carers the focus of all care: The possibility is recognised and communicated clearly, decisions made and actions taken in accordance with the person s needs and wishes and these are regularly reviewed and decisions revised accordingly. Sensitive communication takes place between staff and the dying person and those identified as important to them. The dying person and those identified as important to them, are involved in the decisions about treatment and care to the extent the dying person wants. The needs of the family and others identified as important to the dying person are actively explored, respected and met as far as possible. An individual care plan, which include food and drink and symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion. The Shropshire response was the creation of the Shropshire End of Life Plan for Adults in the last few weeks and days of life which embraces the priorities set out above. Since then several key documents have been produced including: In 2015 NICE produced The Care of the Dying Adult in the Last Days of Life (NG31 December 2015) which was the response following a need for evidenced based guidance for the care of the dying adult especially in regards to hydration and nutrition in the last few days and hours of life. It also provides a baseline for standards of care provision. SCHT is using the NICE NG31 baseline assessment to self- assess against end of life care in the last few days and hours of life. Two recent key documents have drawn attention to inequalities in End of life care, these are: A different ending. Addressing inequalities in end of life care, Care Quality Commission (May 2016) Hiding who I am. The reality of end of life care for LGBT people- Kings College, University of Nottingham, Marie Curie (June 2016) The messages from these documents indicate that there are still inequalities in provision of care for patients at the end of their lives and this is unacceptable. Some LGBT (Lesbian, Gay, Bisexual and Transgender) patients feel isolation and discrimination, therefore do not seek support and services. Experiences of other minority groups reflects variable levels of end of life care and some whose needs and wishes are not met. Improving access to services for the socially excluded groups, including access to end of life care needs to be a

10 priority. SCHT has addressed these issues in relation to LGBT awareness and end of life care. Where we want to get to Shropshire Community Health Trust Vision: Every adult in Shropshire, Telford and Wrekin is supported by high quality, person centred end of life care, which is recognised and delivered early and collaboratively. Meeting the individual wishes and preferences of those in the last year(s) of life and those who are important to them. Strategic aims for palliative and end of life care: Everyone counts- Those people who are approaching their last year(s) of life will be recognised in a timely way. As their condition changes, planning in advance their needs, wishes and preferences with a regular review. Commitment to Quality- Getting to Good and beyond will be achieved by addressing all the issues and more set out by the CQC embracing the essential standards. The CQUIN for End Of Life will be met and exceeded by knowing that our patients and their family and carers have experienced a good death through audit in the last years of life. Improving lives- Ensuring a good life journey towards the person s death and consistent and compassionate Care after Death for carers and families. Working together for patients End of life care is everyone s business. High quality personcentred care delivered early and collaboratively is a high value intervention for the patient and the Trust and our partners. Compassionate care- Staff will be enabled to undertake the important conversations and have time to care for the person who is in the last years of life and those who are important to them. Respect and dignity- All people who are in the last years of life and their families and carers will have individualised care and plans recognising their values and beliefs, wishes and preferences. Local Context- where are we now? This section depicts where SCHT is currently in regards to end of life care and outlines the demographics/ trends in order to predict the requirements for future care provision. The achievement of the strategic vision and aims will make a significant shift from care in the last few weeks, days and hours of life to at least the last year of life. Shropshire Community health Trust provides care to all of the combined population of Shropshire (population 310,278) and Telford and Wrekin (170,200). There is a predicted rise to 316,876 and 178,000 respectively by 2019/20 (Source Midlands and Lancashire CSU 2016). There is a larger predicted increase for Telford and Wrekin of 4.9% due to major planned residential builds; the Shropshire predicted rise is 2.1%.

11 The current activity in terms of contacts for all services (2014/15) within the Trust were 406,513. Nursing contacts being the highest group. The intermediate care bed days usage is at 42,752. The average age was 73years but the most commonly occurring group was those between aged 80-84years. There are more females than males that receive care within SCHT; a longer life expectancy in females accounting for this. Due to the national and local trends of a predicted increase in the aging population and in life expectancy there will be a significant impact on demand within the current services. SCHT provides end of life care in both rural and urban areas which presents with differing approaches and issues. People and their carers, in the more remote areas do not have the same access to care than those in the more densely populated areas. The experiences of those in the rural areas can be physical and social isolation, lack of appropriate transport, limited staff resources, limited specialist services. Approaches to end of life care in these areas will differ from those in the more urban areas, initiatives such as compassionate communities, involvement of the voluntary sector will need to be considered. The neighbourhood working model that is emerging from the Sustainability and Transformation plan for Shropshire will need to put these differing issues for End of life care in the rural and urban areas at the forefront. The following data examines the trends in causes and places of death in both rural and urban areas of Shropshire Community Trust. Where are the main causes and places of death? Rural end of life profile for Shropshire (Latest data Public Health England- EOL profiles) 2014: National figures show that 47.4% of people still die in hospital, this will always be the case and end of life care will always be provided by acute trusts. However national evidence indicates that more people would like to die in their own homes or in a community setting. This evidence is not collected on a local level in Shropshire. In Shropshire 39.7% of deaths occur in hospital, 22.4% at home, 28% in care homes, 7.8% in hospice care. The main causes of death are Cancer 30.2% which is above the national average, with the highest number of deaths in the 75-84years age group. Circulatory disease accounts for 27.4% which is marginally above the national average and the highest number of deaths in the 75-84years age group. Respiratory disease accounts for 12.3% of all deaths which is lower than the national average, with the highest number of deaths on the 85+year s age group. Census data from 2011 shows that there is an increase in single person households aged 65years and over. There has been an increase since the 2001 census from 17,566 to 18,077 in Taking into account national and local trends of an expansion of this age group; there will be an impact on service provision where this group have no immediate family or spouse to support them in their later years. Dementia is an area where we know there is a projected increase in the number of cases. Increased awareness through national campaigns has raised the profile of earlier diagnosis

12 and dementia awareness. In 2012 Shropshire Primary Care Trust (PCT) produced some data which outlined the projection of those with a diagnosis of dementia aged 65years and over (this doesn t define the different types of dementia). In 2012 this was 6.9% of the population, it was predicted that this would increase to 7.3% in 2020 and 8.4% by (source; POPPI-projecting older people population information system. Sept 2012) Similarly the Dementia Intelligence network produced figures for for those patients dying with Dementia, the count for Shropshire was 1429 and 550 in Telford and Wrekin. Urban end of life profile data for Telford and Wrekin In Telford and Wrekin 43.5% of deaths were in hospital (2014 ), which is lower than the national average. 22.5% of deaths were at home, care home deaths 23%, hospice deaths 9.7%. The main causes of death are: Cancer which accounts for 30% of all deaths, which again like Shropshire is higher than the national average. The highest number of deaths from cancer in the 65-74years age group. Circulatory disease accounts for 24.3% of all deaths, which is lower than the national average, with the highest number of deaths in the 75-84years age group. Respiratory deaths account for 13.8% of all deaths, which is marginally higher than the national average. With the highest number of deaths in the 75-84years age group. In Telford and Wrekin in 2015 (source Telford and Wrekin Population profile Telford and Wrekin Council) it was estimated that 50 people had early onset Dementia (below the age of 65yrs). Between the years of it was estimated that 300 had Dementia and 85years people were estimated to have Dementia. Dementia UK has supported the posts in Telford and Wrekin for Admiral Nurses who support the carers who look after people with Dementia. This service has grown and had further investment since its establishment. In Shropshire there are 7,316 single pensioner households (11.5%) with a predicted rise. In conclusion, two thirds of people aged 65+ with dementia die in Care homes; this is reflected in both urban and rural areas of Shropshire (Public Health England EOL profiles 2014) and is the same as the national trend. In Shropshire, Telford and Wrekin, fewer people die in hospital than the national average but data shows that there is an increase in people dying in care homes who have been admitted in their last days, weeks of life. This could be; an indication that some care homes are becoming the preferred place of care and their role in palliative care is expanding. However it could also indicate that reduced community resources (health and social care) is resulting in frailer older people going into care homes to die. The number of people who are dying in hospital is reducing nationally.

13 The predominant group for the highest number of deaths is the 75-84years age group apart from Telford and Wrekin where the highest number of cancer deaths occurs in the 65-74year age group. The predicted rise in single pensioner households in both Shropshire and Telford and Wrekin will have implications and impact on care provision both in health and social care. There is a predicted rise in the number of patients with Dementia across the county, which will impact service provision for end of life care. Admiral Nurses support informal carers who care for family members with Dementia. Due to commissioning arrangements this service is for Telford and Wrekin only. The missing link in the data is the identification and recognition of those who are older frailer people; many will have support through social care provision at home. The lack of a comprehensive frailty register across all organisations hinders the process of data collection for this group of people. The importance of identifying frailty is key. A concept of a person with frailty is that a minor event in their life may have a catastrophic impact and the person has reduced reserve to be able to address it. Therefore early screening and planning is essential. The causes of death along with frailty and Dementia are among the key morbidities that are already identified in the Trust. These are some of the groups of patients who receive care from our community teams and community hospitals. The use of management and clinical indicators will guide as and when to have those important conversations and allow advance planning. Predicting when a patient is in their last years of life-clinical and prognostic indicators. Some deaths are unexpected but many can be predicted however this is inherently difficult whatever the illness, but evidence shows that early identification leads to improved co-ordinated care. (The Gold Standard Framework Prognostic Indicator Guide - GSF, RCGP 2011) See Appendix 2. There are within SCHT patient groups that are already identified and classified with key morbidities where a connection can be made to predict whether they are in the last years of life: Respiratory patients with Chronic Obstructive Pulmonary disease Dementia- Admiral Nurses. This service is for Telford and Wrekin carers. Frailty Falls service. Cardiovascular-including Heart Failure. The heart assessment team is an acute trust based service. For these groups of patients the use of clinical and prognostic indicators is used to some extent but not consistently within the Trust. Similarly there is not yet consistent engagement and use across general practice. An example of recent local development is the Chronic Obstructive Airway decision-making tree which identifies when to stop active treatment. This is still work in progress and out for consultation.

14 Medicines management/symptom management - medication review and symptom management are fundamental for good end of life care. The current position is that a majority of this is undertaken by the person s General Practitioner (GP) including those GP s in the Community Hospitals or the Medicines Management teams who sit within the respective Clinical Commissioning groups (CCG). Telford and Wrekin CCG have a Lead MacMillan GP to support general practice; this is not reflected in Shropshire CCG. Common practice in Shropshire, Telford and Wrekin is to review the medications when a person is in the last hours and days of life. The drug regimens are simplified to only include those which manage the symptoms at the end of someone s life. This review needs to take place earlier on in the patient s end of life journey. SCHT has an expanding cohort of Non-Medical prescribers (NMP) most of whom are nurses and generalists. The NMP has an active role in medication review and this needs to apply to End of Life Care in particular medication review, anticipatory medications and prescribing. For guidance on symptom management for Trust clinicians, SCHT has adopted the West Midlands Palliative Care Guidelines for the use of drugs in symptom control (West Midlands Palliative Care Physicians 2012) this guidance is used by our partners in the local hospices and acute trust. For Specialist Palliative Care support the local hospices provide 24hour access for advice on symptom management. Their Palliative Care Consultant Team and Clinical Nurse Specialists provide outreach to support patients and staff in their own home as well as a bedded and day care facility. The role of the hospice is for symptom management and preferred place of care. SCHT has an identified medic to support EOL care (Associate Medical Director) who has a wider strategic link with primary care and also provides support to the Community Hospital GP s for medicines management. Mortality review in the Community Hospitals is undertaken by SCHT s Mortality group which is chaired by the Trust s Medical Director. Its function is to monitor and review expected and unexpected deaths across the four community hospitals. The group reports to SCHT s Quality and Safety Committee and Quality and Safety Delivery group quarterly. Expected deaths have a local mortality review which is carried out by the respective community hospitals within 7 working days of the patient s death. Unexpected deaths are reported on the SCHT s Datix system, the investigation should be carried out within 2 working days. The review process for both expected and unexpected deaths is in SCHT s Community Hospitals Mortality Review Process Policy (2014). The following diagram demonstrates the causes of death across all 4 community hospitals from April January There were a total of 111 deaths across all Community hospitals from April 2016 to January Of those the main causes of death were malignancy (30%) of all deaths and respiratory (23%) of all deaths. Similarly, the causes of death for the previous year (April March 2016); malignancy was the main cause of death (39%) followed by cardiovascular at 23% and 13% f or respiratory deaths. For those patients who died from a malignancy and end stage respiratory and cardiac disease, it is

15 unclear whether their admission to the Community hospitals was for end of life care and that this was their preferred place of care. The Other category includes; Myelodysplasia, Chronic Kidney Disease, Urinary sepsis, Old Age. Community Hospital Deaths: (Dec 2016 Extract) Awaiting Cause of Death Confirmation, 4, 4% Cardio Vascular, 13, 14% Other, 16, 17% Respiratory, 22, 23% Neurological, 11, 12% Gastro Intestinal, 0, 0% Cardio Vascular Respiratory Malignancy Infectious Diseases Malignancy, 28, 30% Gastro Intestinal Community Hospital deaths by age band April 2016-January % % % % % As expected the highest number of deaths is in the 80 + years age group

16 Community hospital patient deaths April January No. Episodes Bishops Castle Bridgnorth Ludlow Whitchurch 1 0 Apr-16 May-16 Jun-16 Jul-16 Aug-16 Sep-16 Oct-16 Nov-16 Dec-16 Jan-17 Episode End Month There were a total of 111 deaths across all Community hospitals from April 2016 to January The number for the previous year was 93. An increase is also reflected in the unexpected deaths figures; there were a total of 5 unexpected deaths within this time period and 3 the previous year. The causes of death were; Hypotension, Cardiac arrest, Cancer of the Bronchus, Intracerebral bleed, Bronchopneumonia. Even though the deaths were unexpected they were explainable following the mortality review process. In Quarter ; admissions to all community hospitals for End of life care was 61.5% (24) of all admissions (39). 66% of the admissions were transfers from the acute trust. It is unclear in some cases from the analysis of the data whether the community hospital was the preferred place of care or whether this occurred by default. It seems that a proportion of patients who were admitted weren t diagnosed as end of life until their admission. Thirty nine patients died in the Shropshire Community Hospitals between October and December Of these, 31 (79.4%) of the patients or their family had identified that this was their preference to be cared for in the community hospital setting either prior to or during their inpatient stay. Source: End of Life CQUIN report Q Themes identified from mortality reviews (expected and unexpected deaths): Review of resuscitation status on admission to Community hospitals. Completion of medical records following the death of a patient Early warning scores- a requirement for all staff to complete a full set of observations and recognising the actions for a deteriorating patient Staff to carry out Cardiopulmonary resuscitation when a DNaCPR is not in place Patients who are readmitted to Community hospitals have a comprehensive assessment including baseline observations Medical reviews- the guidance is for medical reviews to take place every 4 days Test results- staff responsibility to follow up on diagnostic test results. Recording patient deaths in a timely manner

17 Recommended actions and lessons learnt from the unexpected death review and datix investigation are discussed at the Divisional Quality and Safety Group and disseminated to staff by individual/team briefings The recent report : Learning, candour and accountability- A review of the way NHS Trusts review and investigate deaths of patients in England (Care Quality Commission December 2016).In summary this report found that there is no single framework for NHS Trusts that sets out what they need to do to maximise learning from deaths that may be the result of problems in care. Particularly focussing on those people with a learning disability and older people receiving mental health care. The recommendations for provider organisations alongside their commissioners are to work together to review and improve their local approach following the death of people receiving care from their services. This approach is currently being addressed by the Mortality Group. Anticipatory medication has been well established across all organisations in Shropshire for several years. The Just In Case boxes support anticipatory prescribing and access to palliative care medications for the last few days and hours of life. Proactive management of symptoms is essential to ensure patients are free from distress and other symptoms. This system has addressed the issue of the difficulty in obtaining their medication during out of hour s periods. To ensure a smooth transition from acute care to a community setting a discharge medication pathway for patients with palliative care needs being discharged from Shrewsbury and Telford NHS Trust (SATH) to SCHT has been developed. A palliative care governance agreement has been established to improve cross boundary communication, documentation and medicines management. The pathway gives clarity where medication is prescribed within SATH but administered by Registered Nurses within SCHT (anticipatory medication). Stopping life sustaining treatments includes cardiopulmonary resuscitation, intubation and mechanical ventilation, clinically assisted hydration and nutrition, dialysis and antibiotics, deactivation of a cardiac defibrillator. Treatments are considered beneficial if they relieve suffering, restore function and enhance the quality of life. On the other hand the same treatments could be considered burdensome, causing pain and other side effects, prolongs the dying process and detracts from quality of life. The most difficult and sensitive decisions in end of life are those around stopping life sustaining treatments. Planning in advance and having those important conversations early on will make some of this decision making clearer for staff and patients. Advance directives can set out what a person wants and doesn t want as they approach their last years of life. The DNaCPR ( Do not attempt cardiopulmonary resuscitation) being the most widely known advanced directives. Early recognition of those approaching the last years of life is essential so people can document their preferences and wishes in relation to current and future treatment options. Currently in SCHT the use of advance care planning and advance directives are inconsistent and are more widely used in Children s services and care homes. There is inconsistent use

18 of literature and information for patients/families/carers to access with regards to advance care planning and preferred place of care. The use of DNaCPR forms varies across all organisations and has to be reviewed following a transition of care. However a work-stream that has emerged from the wider end of life group to address this by developing a consistent approach with a view to adopting the Respect guidelines as set out by the Resuscitation Council. In summary; Respect creates personalised recommendations for a person s clinical care in a future emergency in which they are unable to make or express choice, it includes their personal priorities for care and agreed clinical recommendations. This is complementary to the wider process of advance/anticipatory planning. Care After Death is the final step in the journey of providing care to a person and their family and it involves many aspects as well as care of the body. Currently there is an absence of policy and procedure for all aspects for Care After Death within SCHT, which needs to include bereavement support. Organ and tissue donation following death must be a part of end of life care. These are discussions that can be had in the final years of life if this is the wishes and preferences of the dying person. Tissue donation can be carried out after death and when the deceased is in the mortuary in any setting. For organ donation the deceased will need to be continued to be ventilated following death. There is a requirement to develop procedure and policy in SCHT for organ and tissue donation so it becomes part of end of life discussions and care. Tissue and organ donation are issues that are also absent from the Shropshire End Of Life Plan, this will need to be reviewed. Bereavement services are not just for the families who have lost a loved one, bereavement can start before a person dies and this person will require spiritual/bereavement support too. Services and support varies; those patients who have died whilst under the care of the local hospice their families and carers receive spiritual support from the bereavement team, similarly those who die in community hospitals have this support from local chaplaincy services. Bereavement support for those patients/families/carers at home is patchy and inconsistent and relies on the patient and/or families local support network. Supporting our staff following the death of a patient is essential Most staff support and debriefing following the death of a patient comes in the form of unstructured clinical supervision with their peers and teams/ward staff. A survey has been undertaken in SCHT which reflects these findings. A death of a patient whether at home or in a community hospital can have an impact on all members of the team or ward, whether a health professional, health care assistants, ward clerks. Support mechanisms need to be in place for all members. An approach to supporting staff is being developed in SCHT with the introduction of Schwartz rounds, mentoring and clinical supervision. With a review of the current Clinical supervision policy and approach. A National Framework for local action - Ambitions for Palliative and End of Life Care ( ) has been adopted by the wider health/social care economy end of life group. The six domains have been set out in the previous section.

19 The domains in this document underpin the vision and aims of this strategy and will provide a co-ordinated approach to care with our partners across the county. Specialist Palliative Care services - the care and support SCHT provides to patients in the last year(s) of life is provided by generalists working in the community or community hospitals. There are two hospice facilities which has 24 inpatient beds across two sites (Telford and Shrewsbury) and a day care facility at both sites. The hospice team (Palliative Care Consultant and Specialist nurses) provide 24hour/7 days a week access/support for SCHT clinicians who may need specialist advice and support for symptom management. Care Homes - the previous data demonstrated that the number of deaths in care homes is increasing and more people are going there to die. There are several reasons for this; care homes function in providing end of life care and this is the person s preferred place of care. Care homes are well placed to do advance care planning, this has been demonstrated in some care homes across the county. Work with West Midlands Ambulance Service (WMAS) is introducing the emergency passport scheme for care homes. This will involve having early important conversations with the residents and their families about their wishes and preferences as they approach their last year(s) of life. Summary This section has outlined the demographics and data from both rural and urban areas in Shropshire, Telford and Wrekin and identified some of the challenges the Trust will face with an increasing aging population and longer life expectancy. Even though there will always be patients who will spend their last few hours and days of life in an acute trust, either as their preferred place of care or a sudden decline in their health. A larger proportion would rather die at home or in a community setting. We know that there are identified groups of patients in SCHT that we already care for that we can start the early conversations and planning to explore their wishes and preferences. These services and care provision are areas that can be built upon and continue to develop in order to achieve the vision for end of life care. The next section depicts what we do well. What we do well- this section depicts the areas where we are making good progress and will form the foundations to build upon in order to meet the strategic vision for end of life care within SCHT. Shropshire community health trust values have emerged through staff engagement and are embedded into everyday practice in the Trust and are reflected in what we do well: Improving lives Everyone counts Commitment for Quality Working together for patients Compassionate Care Respect and dignity

20 End of life care is understood to be everyone s business. There is no shortcut to good end of life care; we have one chance to get it right. It needs to be embedded into our clinical culture and make it everyone s business and support everyone to do it. Headline Dying matters week 8-13 th May Opening the conversation about death and dying. SCHT have a place in Telford shopping centre on 12 th May to give the public the opportunity to talk openly about what they would like to do before they die. This is reflected in Shrewsbury market place hosted by acute trust colleagues The following elements outline what we do well in SCHT and can be built upon to provide high quality end of life care: Appointment of End of life lead role, a generalist specialist who is in support of the above values. The role is supporting and leading staff to develop knowledge and skills in end of life care within the community and community hospitals. The Care Quality Commission identified many areas of good practice and this is verified by their visit in March The Good category was reported for the standard of caring and responsiveness of working with partner organisations in planning and coordinating services and meeting the wishes and needs of patients and their carers/families. The CQUINS (Commissioning for quality and innovation) for End Of Life 2016/17 are submitted into a quarterly report to the Commissioners, Shropshire and Telford clinical commissioning groups (CCG). These requirements are currently met in terms of selfassessment against the NICE NG31 guidance reporting a 90% compliance for the last quarter of 2016 compared to 72% for the second quarter in The training needs analysis reflects an increase in the number of staff acquiring skills and knowledge for end of life care. The 5 Why s audit for end of life care in the community hospitals demonstrates that some patients chose the community hospitals as there preferred place of care. All the requirements for this were met in Q End of life operational group- The Trust has functioning, vibrant enthusiastic operational group for End of Life which meets monthly, its main responsibilities are: To provide assurance to the Quality and Safety Delivery Group and through them the Quality and Safety Committee and the Board relating to Palliative/End of Life Care across our services Safety (Are services safe) The management of clinical risks associated with Palliative and End of Life Care Monitoring of risk registers in relation to Palliative and End of Life Care Trust systems for reporting, analysing and learning from all incidents relating to Palliative and End of Life Care in line with national guidance and best practice Lead the development of the Trusts safety culture in relation to Palliative and End of Life Care, ensuring plans implemented meet local and national requirements

21 Agree and escalate key issues/ risks of concern that cannot be addressed by the End of Life Operational Group to the Quality and Safety Delivery Group Experience (Are services caring and responsive) Evidence of improving the patient and carer experience in relation to Palliative and End of Life Care including reviewing any complaints and PALS contacts Effectiveness (Are services effective and well led) Compliance with Care Quality Commission (CQC) registration and compliance with regulations in relation to Palliative and End of Life Care Measuring the effectiveness of clinical care in relation to Palliative and End of Life Care Receiving and reviewing national guidance and implications for the Trust in relation to Palliative and End of Life Care Progress on the implementation of the local health economy Palliative and End of Life strategy Provide regular feedback to the Quality and Safety Delivery Group on activity of the group to ensure appropriate assurance However besides these function most importantly it provides a forum for discussion of everyday end of life care issues for all of its members and the teams and wards they represent. Establishment of the Trust s End of Life patient reference group is key to service development for end of life care. One of the fundamental functions of the group is to support patient/carer feedback and experience on care delivered within the Trust. This will be achieved by facilitating the bereavement survey and focus groups. Another function will be to support the development of consistent information that is given to patients and carers around death and dying and after death care and support. Clinical Audit for End of life Care in the Trust has been implemented since The standards used have been based on the NICE NG31 (Dec 2015) Care of the dying adult in the last hours and days of life, which provides an evidence based framework to capture data. This process will be reviewed in view of the Trust Strategy to audit care in the last years of life rather than the last days and hours of life. Just in case medications are essential for good anticipatory end of life care. This is demonstrated by a well- established system across all organisations in the county, which embraces the concept of anticipatory prescribing. Engaging local pharmacies, out of hours service and general practitioners. Community hospitals facilities for end of life care and a preferred place of care. This is being enhanced by the implementation of The Swan Scheme which is an end of life and bereavement initiative that ensures end of life care is everyone s business within the Community hospitals. The scheme is symbolised by a swan logo, so all staff are aware that there is a person who is in the last days and hours of life. All hospitals are now stocked with the Swan memory boxes and useful contents. The Swan room is a place set aside for the dying person and their families. All community hospitals will have swan room facilities.

22 Community nurses fill the gap hour before out of hours services begin. In Telford and Wrekin, the Rapid Response team provide a service until 10pm. In other areas of the county the out of hours provider service starts at 7pm, this leaves a gap between when community teams service end and out of hours commences. Therefore The Trust relied on the goodwill of the district nurses to cover the gap (SCHT CQC report March 2016). The availability of 4 wheel drive for community staff in rural areas in bad weather has enabled the continuity of care in times of inclement weather. This scheme is supported by the local out of hours provider Shropdoc. End of life and palliative care patients are prioritised when there are adverse weather conditions. Finally in this section our community teams and ward staff provide care every day for patients in their last year(s) of life. Here are some of their thoughts and views of what we do well: What our staff say about end of life care: the length of time on our caseload may vary some we may know from the Gold Standard meetings but have known some patients who have accepted a DN visit at the end and have died the day they were admitted to caseload teams discuss the outcomes often there is no formal debrief some staff find that they have built up a rapport or have had a particularly difficult time organising care to the standard they want they are emotionally drained post event here at Whitchurch I think that all staff would say we offer great EOL care and the family feedback seems to reflect that there is always more that can be improved but that is not always possible our EOL suite works really well and families enjoy having their own space and like the feeling that they are welcomed to stay as long as they wish.issues with patients transferred from acute trust. Where there has been no discussion with the relatives regarding the patients prognosis and staff having to pick up the pieces on admission. The Gaps and deficits identified in this strategy will inform the operational action plan in order to meet the strategic vision however some of the gaps and deficits identified are not within the remit of SCHT to deliver. These will be identified as such in this section along with the gaps and deficits for SCHT to address: There is a predicted increase in demand on community services within the next 5 years as outlined in the previous sections. Due to an increasing elderly population and over 65years old single occupancy households across both Shropshire, Telford and Wrekin. Alongside this is the predicted rise in the number of patients with dementia. This predicted change in demand and capacity has not been depicted by commissioners as well as the differences in rural and urban service delivery. This also include recognising the potential involvement/development of compassionate communities/voluntary services