Palliative And End Of Life Care Strategy - Enhertsccg

Through implementing this strategy the key outcomes the CCG expect to see include:1. An increase in the percentage of people achieving their preferred place of care andpreferred place of death2. All those identified as in need of palliative and end of life care will be offered theopportunity to have an advance care plan3. An operational EPaCCS system across all providers4. A single care plan document available to be used by all stakeholders5. A reduction in unnecessary hospital admissions for those receiving end of life careFinal DraftPage 8 of 52

2. IntroductionThis strategy outlines how East and North Hertfordshire CCG (Clinical Commissioning Group)proposes to improve palliative and end of life care (EoLC) over the next three years (May 2017March 2020).It is intended that the strategy is considered as a framework, with detailed action plans subsequentlybeing produced to deliver the overarching principles stated within this strategy. The CCG will ensurethat the views and opinions of the key stakeholders including local residents, patients and carers areengaged in the development of these action plans.The scope of this strategy encompasses: All adults (defined for the purposes of this document as over the age of 18 years old) withany advanced, progressive, incurable illness Care provided in all settings such as and including Care Homes, Hospices etc. Care provided in the last year(s) of life. Patients, carers and family members (including care after bereavement).This strategy will be reviewed annually to ensure that it is in line with the most current policies andtakes into account up to date information, such as needs assessments and national data regardingpreferred place of death.For the purpose of this strategy the definitions of palliative care, approaching end of life and end oflife care are:2.1 Palliative CarePalliative care aims to improve the quality of life for people with life-limiting illnesses, bycontrolling pain and other symptoms. It also helps those receiving care, families and carers dealwith emotional, spiritual or practical issues arising from the illness.People suffering from an incurable progressive illness may require palliative care - for example,those with heart failure, advanced respiratory disease, dementia, the end stages of progressiveneurological diseases or cancer. People of all ages can benefit from palliative care at all stages oftheir illness.2.2 ‘Approaching the End of Life’People who are likely to die within the next 12 months are ‘approaching the end of life’. This alsotakes into account people whose death is likely to be imminent in the next few days or hours. TheGeneral Medical Council (GMC) defines people ‘approaching the end of life’ as being those with: advanced, progressive, incurable conditionsFinal DraftPage 9 of 52

general frailty and coexisting conditions that mean they are expected to die within 12monthsexisting conditions if they are at risk of dying from a sudden acute crisis in their conditionlife-threatening acute conditions caused by sudden catastrophic events8Within this context, any palliative care received within the last 12 months of life is regarded asend of life care.2.3 End of Life CareAccording to the Department of Health (2008) End of life care is care which “helps all those withadvanced, progressive, incurable illness to live as well as possible until they die. It enables thesupportive and palliative care needs of both patient and family to be identified and metthroughout the last phase of life and into bereavement. It includes management of pain and othersymptoms and provision of psychological, social, spiritual and practical support”.989General Medical Council Treatment and Care towards the End of Life: good practice in decision makingDepartment of Health, End of Life Care Strategy, (2008)Final DraftPage 10 of 52

3. Background3.1National ContextAround half a million people die in England each year10; the majority of these deaths are in adultsaged over 65, and many of these people will have had chronic illnesses and will require support fromhealth and social care services as they approach the end of their lives11.The Department of Health published the first comprehensive framework for the commissioning anddelivery of palliative and end of life care in the form of the End of Life Care Strategy in 2008. Sincethen, National Institute for Health and Care Excellence (NICE) has released a guideline “NG31 Care ofDying Adults in the last days of life” and quality standards “QS13 End of life care for adults” and“QS144 Care of the Dying Adult in the last days of life” to promote clinical best practice in end of lifecare.The National Palliative and End of Life Care Partnership released the “Ambitions for Palliative andEnd of Life Care” in 2015 to build upon the strategy and outlines 6 high-level ambitions (see Figure 1)that providers and commissioners should seek to achieve in order for people to have the best end oflife care.Figure 1: The six ambitions for palliative and end of life care12Many people receive high quality care in hospitals, hospices, care homes and their own homes.However, it has been identified that one of the biggest challenges in providing end of life care is inhelping people achieve their preferred place of death. The National Survey of Bereaved People 2015(VOICES - Views of Informal Carers - Evaluation of Services) indicated that 81% of people would10Whole Systems Partnership, National End of Life Care Programme: Improving end of life care (2013)National End of Life Care Intelligence Network, ”What We Know Now” (2014)12National Palliative and End of Life Care Partnership Ambitions for palliative and End of Life Care (2015)11Final DraftPage 11 of 52

prefer to die at home, however, despite this the national figures show that 49% of people die inhospital13.A common theme throughout all the national documentation is the importance of earlieridentification of those requiring of palliative and end of life care to enable the patients, healthprofessionals, families and carers plan adequately and ensure the needs and preferences of theindividuals are met. Approximately 1% of patients on a General Practice (GP) list die every year14 andthe Gold Standards Framework (GSF) was introduced to support health professionals to anticipatethe needs of this 1%. Although originally developed for Primary Care, the GSF can be used in hospitaland care homes to identify the appropriate end of life population estimated to be 30% of patients inhospital (per year) and 80% of residents in a care home (per year) 153.2East and North Herts CCG – The Local Picture3.2.1 Local ContextEast and North Herts CCG serve a population of 580,000 people, served by 60 GP practices making ita large CCG in comparison with others in the region.As a whole the CCG is a generally affluent area with key healthcare priorities similar to those atnational level (LTCs, Obesity, Cancer, and Heart Disease). Life expectancy is above national averagesfor England: 83.5 years for a woman16 (compared to 83 years for England), 80.3 years for a man(compared to 79.3 years for England)17The CCG has diverse populations and although deprivation across the whole of Hertfordshire islower than the national average there are pockets of deprivation in East and North Herts. Torecognise this diversity the CCG have a ‘Locality Commissioning’ structure with six localities that setpriorities based on the needs of the local community.1. Lower Lea Valley2. North Herts3. Stevenage4. Stort Valley & Villages5. Upper Lea Valley6. Welwyn HatfieldThe division of the localities is shown in Figure 2.13Office for National Statistics, National Survey of Bereaved People, (VOICES) (2015).Whole Systems Partnership, National End of Life Care Programme: Improving end of life care (2013)15www.goldstandardsframework.org.uk16Public Health England, Local Health Profiles (2016)17Public Health England, Local Health Profiles (2016)14Final DraftPage 12 of 52

Figure 2: Division of localities in east and north HertfordshireThe CCG is a patient-centred organisation. It aims to: Work with patients, partners, managers and clinical colleagues from all sectors to commissionthe best possible healthcare for our patients within available resources Reduce health inequalities and achieve a stable and sustainable health economy by workingtogether, sharing best practice and improving expertise and clinical outcomes18The CCG has 9 strategic ambitions, one of which is to improve end of life care and is committed tosupporting people to achieve their preferred place of death and to reducing the proportion ofdeaths in hospital (referred to as hospital deaths).Looking at the trends in relation to place of death it has been identified that the number of deathseach year and average age at death it is predicted to increase, with those dying more likely to haveincreasingly complex co-morbidities.This ageing and more complex population will have a significant impact on health services and thecurrent collaboration between statutory, community and voluntary organisations across the CCGneeds to be strengthened further to ensure people receive the best possible quality of care.3.2.2 Local ServicesThe need for good quality, community based services is important in reducing the number ofinappropriate hospital deaths and supporting people to achieve their preferred place of death.18www.enhertsccg.nhs.uk/aboutusFinal DraftPage 13 of 52

Palliative and end of life care in East and North Herts is not provided by a single source, but througha multi-organisation approach designed to support the needs of the individual. The majority of this isdelivered in the community.As the needs of the person become greater, the level of support available should increase.Palliative and end of life care and support is currently provided in the following ecialistPalliative CareHospitalPalliative CareAdvice LineOtherServicesFurther descriptions of the role each of these providers plays in providing palliative and end of lifecare can be found in Appendix A.Final DraftPage 14 of 52

4. East & North Hertfordshire CCG’s Vision for Palliative and End ofLife CareWhen approaching the end stage of life people should have the care and support to enable them tolive to the end in the best way that they can and die well in the place of their choice. To realise thisvision East and North Herts CCG have adopted the eight foundations set out in the “Ambitions forPalliative and End of Life Care: A National Framework for local action 2015-2020” produced by theNational Palliative and End of Life Care Partnership. These foundations are the pre-conditions fordelivering the rapid and focused improvement that the CCG seeks.1.2.3.4.5.6.7.8.Personalised Care PlanningShared RecordsEvidence and InformationInvolving, supporting and caring for those important to the dying personEducation and training24/7 accessCo-designLeadershipThe national priorities for palliative and end of life care include the sharing of care records and anincrease in the number of people achieving their preferred place of death. The 8 foundations havebeen mapped along with the national priorities for palliative end of life care and 5 priority areashave been identified, underpinned by workforce development. The mapping of the foundations andthe ambitions can be found in Appendix BFigure 3 – Palliative and End of Life Care Priority AreasFinal DraftPage 15 of 52

By delivering projects that improve palliative and end of life care under these priority areas, the CCGaims to achieve the following:1.People who require palliative or end of life care are identified early, they receive the careand support they want in their preferred place of care, and are empowered to makedecisions about their care2.People approaching the end of life will have access to end of life healthcare support 24hours a day, 7 days a week3.Good information on all options of palliative and end of life care and support is available forpatients and their families and carers4.People die in their preferred place of death and have a positive experience of palliative andend of life care5.People are only admitted to hospital when appropriate and at these times their stay inhospital is for the shortest time possible6.Families and carers have access to services for bereavement support7.All providers work collaboratively and communicate with each other to provide palliativeand end of life care that is patient-centred, personalised, integrated, and patient ledaccording to their preferences8.Staff feel confident and capable of delivering high quality palliative and end of life care, andare given training in order to do soThe principles and outcomes for each of the priority areas are explored in the next section of thisstrategy.Final DraftPage 16 of 52

5. Palliative and End of Life Care Priority Areas and Objectives5.1. Improved, Personalised Care Coordination“All people approaching the end of life need to have their needs assessed, their wishesand preferences discussed and an agreed set of actions reflecting the choices theymake about their care recorded”National End of Life Strategy (2008)19The Leadership Alliance for the Care of Dying People in 2014 identified 5 priorities for end of life careincluding “An individual plan of care, which includes food and drink, symptom control andpsychological, social and spiritual support”20. Numerous reports and studies both before and afterthis identify personalised care planning as essential for providing quality care to those who are dyingand support to families and carers.Palliative and end of life care plans are often instigated when the person is identified as in the lastyear of life, however, the point of at which and way in which people are identified can vary greatlydepending on the condition the person has. In 2013 a study found that “75% of patients with cancerhad been identified formally for palliative care compared with 20% of non-cancer patients”21indicating that for some conditions, people are not being identified at all. The same study found thatfor all conditions, palliative care often was introduced too late and that for some people it was onlyin their last few weeks of life that they were identified as end of life stage.East and North Herts CCG has seen an increase in the number of people on the end of life register,suggesting that improvements have been made in identifying people approaching the end of life.However, the post death audits received from practices for 2015/16 showed that only 45% of peoplewho had died, had a preferred place of death recorded within their notes. Where a care plan is inplace and the preferred place of death recorded, this is achieved for 79% people.People who have been identified for palliative and end of life care and who have a personalised careplan, either for the last year of life or earlier through an advance care plan are more likely to achievetheir preferred place of death.In order to ensure that patients received quality and personalised end of life care, three componentsare required:1) Early identification2) Advance Care Plans3) A system for sharing care plans across care settings in a co-ordinated way19Department of Health (2008), End of Life Care StrategyLeadership Alliance for the Care of Dying People (2014), One Chance to get it Right21European Journal of Palliative Care (2013), How good is primary care at identifying patients who needpalliative care?20Final DraftPage 17 of 52

Where these three components are achieved patients and their families feel supported and goodpalliative and end of life care is delivered which can have a lasting impact on how families and carersgrieve.Within these three areas East and North Herts CCG have set a number of objectives which it aims toachieve through the implementation of this strategy and the subsequent action plans derived fromit.5.1.1 Early IdentificationIn order for people to receive the appropriate support and care in their last stage of life, earlyidentification is required. The Gold Standards Framework supports GPs to identify end of lifepatients, assess and record their needs and plan their care appropriately. Those identified under theframework should be placed on the end of life care register. It is estimated that approximately 1%22of patients within a practice should be on the register. For East and North Herts CCG this isapproximately 5878 people a year.Figure 4: % of patients register on an End of Life register (QoF 2015-16)231.20% of Patients1.000.80England Average0.60Average of comparator CCGs0.40NHS East and NorthHertfordshire CCGEstimated Prevalence0.200.002012-132013-142014-152015-16Year (April-March)There has been a steady increase in east and north Herts in the percentage of patients on an End ofLife register and not only above the England Average, but East and North Herts CCG is the best2223National End of Life Care Programme, Find your 1%NHS Digital, Quality Outcomes Framework 2015-16Final DraftPage 18 of 52

performing CCG when compared to 10 similar CCGs24. However, when looking at the breakdown bylocality, Stort Valley and Villages have a much lower percentage of patients recorded on the end oflife register.Figure 5: % of patients register on an End of Life register by locality (QoF 2012-16)25Objective 1Every patient ‘approaching the end of life’ must be on their General Practice’s Gold StandardsFramework (GSF) Register (with the exception of those who have life-threatening acuteconditions caused by sudden catastrophic events).By identifying who is in their last year of life the appropriate conversations and care planning cantake place leading to a higher quality of end of life care, fewer inappropriate hospital admissions anda good death in their preferred place of death. There are a range of tools available to support GPs toidentify their patients, such as the GSF.Objective 2End of Life patients must be identified early using best practic

palliative and end of life care settings feel able and equipped to provide care to those with non-cancer conditions. Given the spectrum of conditions for which palliative and end of life care is relevant, it is recognised that this strategy will need to link into other programmes across the CCG e.g. Stroke, respiratory and dementia.