Improving End of Life Care for People with Dementia. Lucy Sutton, End of Life Care Lead

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1 Improving End of Life Care for People with Dementia Lucy Sutton, End of Life Care Lead

2 Why do we Need to?

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4 I stood outside her room and heard her scream with pain when they changed her. I asked for the morphine to be increased and was told that this would result in her becoming semi-conscious. I couldn t see why this was a problem. There seemed to be difficulty in understanding that my mother should be nursed appropriately for a dying person rather than someone who had some hope of a reasonable life expectancy. I should point out that both my Mother and I are practising Catholics and that I was not discussing euthanasia, but simply asking that adequate pain relief be given to avoid suffering although being aware that this could have terminal side effects. I was asked to put my views in writing, but still did not feel that my views were being accepted.

5 Dementia in Hospitals In 2014/15, there were 320,003 emergency inpatient admissions with a recorded mention of dementia in England, this equates to a standardised rate of 3,306 per 100,000 people aged 65 and over. 1 49% Recording inconsistencies are found in nearly half of inpatient admissions for people previously recorded as having dementia. 49% of admissions in 2014/15 did not have a recorded diagnosis, despite previously being recorded in hospital with a diagnosis of dementia. 2 LoS: In 2014/15, 28% of all completed inpatient emergency admissions for people aged 65 and over with a recorded mention of dementia were one night or less. 1 28% PLACE: In 2015, the national average score of acute/specialist site dementia assessments was 73%. Sites were assessed on whether they were equipped to meet the needs of people with dementia against a specified range of criteria. 3 73% Deaths: In 2014, 32% of all deaths for people aged 65 and over with a recorded mention of dementia occurred in hospitals, this has decreased over time Dementia Intelligence Network, Public Health England 2 HSCIC Focus on Dementia Report, Patient-Led Assessments of the Care Environment,

6 Dying well Specific issues around dementia concerns about capacity not perceived as a terminal illness 30% of those over the age of 60 will die with or from dementia 50% will have at least two admissions in their last year of life less likely to receive hospice or palliative care less likely to have their spiritual needs considered when they die

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8 Older people may have different and more complex needs because: They are most commonly affected by multiple medical problems; The cumulative effect of these may be greater than any individual disease; They are at greater risk of adverse drug reactions and iatrogenic illness; Minor problems may have a greater cumulative psychological impact; Problems of acute illness superimposed on physical or mental impairment, economic hardship and social isolation and There is a tendency for under-assessment and undertreatment of symptoms compared with younger people Consider all of these then add in dementia

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12 Patients with end stage dementia had a number of symptoms for which they did not receive effective palliative care analgesia was infrequently used, dying phase not recognised and some people given antibiotics inappropriately in last days of life. (Lloyd-Williams and Payne, 2002)

13 Marie Curie Research findings on EoLC patients with dementia People in the later stages of dementia receive most of their healthcare from GPs or emergency services, with little support from specialist healthcare professionals, despite having complex needs. The research found that only 1% of people with advanced dementia were seen by a geriatrician or an older persons psychiatrist and that 96% of people in the study saw a GP in their last month of life. The study also concluded that paramedics play a major role in assessment and healthcare towards the end of life, suggesting a reactive rather than planned response to patients needs nearly one in five (19%) were seen by a paramedic in the month prior to their death. Care homes, where the majority of people with dementia will die, were also found to be poorly served by secondary healthcare services and GPs visiting homes were not supported by specialist services. Based on the findings, the researchers say that healthcare services are not currently tailored to the complex needs and symptoms of people with advanced dementia. Given that dementia is now the leading cause of death, they say there is urgent need to ensure an adequate standard of comfort and quality of life for patients. The full research paper can be found at:

14 What are we Doing to Help Improve EoLC for People with Dementia?

15 Ambitions for Palliative and End of Life Care Mandate Choice Commitment and End of Life Care Programme NHSE Workstreams Principles OCTGIR End of Life Care Strategy

16 If you deliver the Ambitions, you have delivered the Commitment 16

17 NHS ENGLAND TRANSFORMATION FRAMEWORK THE WELL PATHWAY FOR DEMENTIA

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19 Please note this work was published prior to LCP being withdrawn

20 Training and communication Service Organisation, training and communication Recognition Communication MDT Unified Assessment/ care planning Registration Key Worker Establish Preferences Regular review Effective 24/7 contact point ACP - Anticipate/ react to escalating needs Planning Care After Death 24 hour care available LCP

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22 Sustainability and Transformation Plan for Dementia Outcomes and Impact Family and carers Dying well Benchmarking Achieving/maintaining diagnosis rate Accessing post diagnostic support and care planning Person with dementia Living well Supporting well Identifying gaps Implementing Maintaining independence in the community Avoiding unnecessary hospital admission and readmission Supporting prevention Encouraging dementia friendly communities Community Diagnosing well Preventing well Learning from others Selective investment Accessing Cognitive Stimulation Therapy Enabling appropriate antipsychotic drug prescribing Facilitating Advance Care Planning

23 How confident do you feel identifying people with dementia in the last year of life? Would I be surprised if this person were to die/ be alive in the next year? This should be a positive question which frames your approach to care and leads to assessment, care plan, advance care plan not negative. It is important to acknowledge uncertainty.

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26 How confident do you feel initiating the conversation? What are your reasons for finding this challenging?

27 It s not easy to talk about end of life issues but it s important to do. Now that we ve put our affairs in order and talked about what we want, we can put that in a box as it were, and get on with living one day at a time, cherishing each day together, as I know it s going to end one day (Carer of patient with COPD). If you talk about dying, you can say everything you want/need to. There are no regrets. (Wife of man who died of cancer) If you talk about it, you can make the most of life. (COPD patient) It s normal it s going to happen to us all at some point! (COPD patient)

28 If we are to offer ACP s to people with dementia then we need to be frank with them. Dementia is a terminal disease, you don t recover from it. We do not avoid this language with other terminal diseases. It puts patients with dementia at a serious disadvantage. It strips them of their right to make choices about their care. It has to be done early before loss of capacity occurs. Two years into the disease and my mum could not have truly understood the implications of an ACP. At the very beginning she could have. Tina Wormley, Expert by Experience

29 It also considers situations where it has not been possible to initiate an ACP / future wishes conversation early and provides some tips on how to manage this. My future wishes Advance Care Planning (ACP) for people with dementia in all care settings The aim of this resource is to help practitioners, providers and health and social care commissioners: create opportunities for people living with dementia to develop an ACP through initiating and /or opening up conversations; ensure advance care planning is fully embedded in wider inclusive, personalised care and support planning for dementia ensure people living with dementia have the same equal opportunities as those diagnosed with other life limiting conditions/ diseases, in terms of accessing palliative care services / support; The guide also sets out information and resources around ACP that are already in use at a local level.

30 Supporting Carers Carers of people with dementia experience greater strain, distress and higher levels of psychological morbidity than carers of other older people Early and ongoing discussions around end of life care between staff and family are essential Although uncertainty is a common feature of dying with dementia, not knowing is something carers find particularly hard to deal with It is also important that staff help carers to understand that while their views will be considered they do not have responsibility for end of life decisions Carers need access to a carers assessment, inclusion on the carers register and signposting to sources of info and advice

31 What support we provide nationally National Programme Board, chaired by Sir Bruce Keogh Tools & resources for commissioners & STPs Electronic shared records for EoLC Personal Health Budgets Bereavement pathways Care after death in community Focus on inequalities Supporting Dying Matters Urgent care Enhanced Health in Care Homes Much, much more. and importantly, working in partnership 31

32 NHS Improvement EoLC Learning Collaborative Key themes Leadership & Strategy Focused on CQC Action Plans (Short term) Had identified executive leadership Early stages of launching a strategy (Long Medium term) Largely internally focused - some Trusts undertook wider consultation Few examples of one whole health economy wide strategy (?STPs) Specialist Palliative Care Teams Experienced significant increase in workload Big agenda overwhelmed EoLC Facilitator posts Different set of skills, knowledge and resources required Approach key - enabler for change V being responsible ( everyone s business )

33 Key themes Improvement Approach Pace an issue speedy rollout V incremental/sustainable change Tendency to want to do everything - understanding where do we start & where do we need to improve Transform (mixture of implementing, not sustained or not started) Lack of improvement knowledge/skills/resources Often isolated to wider service transformation agenda (e.g. emergency care, dementia etc) What does good look like & how do we do it? Data and measurement Largely process driven numbers few outcomes the impact is Complaints, incidents and mortality reviews Audits time consuming V quick small scale (PDSA) Lack of experience measures

34 Key themes Training & Development Significant focus since CQC reviews Having conversations sited as the biggest area of challenge Reaching doctors identified as an issue Patient Experience Identified commonly as an issue in terms of best approach Various approaches being used from voices to locally developed (some Trusts not doing anything around survey s) No examples of end of life care survey s with patients mainly bereavement focused with relatives Documentation Significant focus on replacing Liverpool Care Pathway Many Trusts still in early stages of roll out struggling with compliance Making fields mandatory - reluctance to meaningfully localise EPaCCs a challenge in most areas, if in place mainly read only for staff

35 Key themes Rapid Discharge Variable and dependant on geography Some examples of same day discharges given 24/7 days service Largely face to face in office hours Out of hours telephone services Opportunities for nurse led services being considered Challenges re recruiting doctors

36 Right Care/ PHE Preventing well: coronary heart disease Diagnosing well: Dementia diagnosis rates published monthly: monthly-workbook/ Living well: DEM002 care plan reviews Supporting well: emergency admissions Dying well: death in usual place of residence Dementia resources are available: dementia/ PHE Care Homes EoLC EoLC Intelligence Network endoflifecareintelligence.org.uk Coming Soon: EoLC Atlas of Variation - Variation in the proportion of all people who died with an underlying or contributory cause of dementia by CCG (2015) 36

37 HEEs Priorities National and Local Approach to EoLC Working within Context of Person Centred Care Developing an Asset Based Approach Embedding Education and Training into Local Strategic STP/ACS/CEPN Approach Good Practice Guidance Sharing Work Linking to Learning from Deaths Working with Independent Sector Urgent Care Group Access to EoLC Elearning for all Communication Skills Toolkit Influencing Curricula and the Delivery of Training to bring about the Culture, Values, Behaviour Change Required

38 HEE Resources 1. Person Centred Care Competency Framework. To support the implementation we are also developing a web based resource toolkit which will include communication skills and will be launched by March 2018 at the latest. 2. The EoLC Competency Framework 3. A practical guide to developing an asset based approach to workforce learning and development 4. Community Education Provider Networks 5. E-Book Dementia Education and Training packages.

39 e-elca website

40 Open access 14 open access sessions for non-registered users aimed at social care workers, volunteers and admin staff

41 e-lfh Hub An e-learning platform designed specifically for our users Easy to register (including care home and hospice staff) Easy to launch content Easy to share content with peers/trainees Easy to show evidence of their learning Works on smartphones and tablets Access to e-lfh programmes via OpenAthens e-elca is also available on ESR Some sessions are also available to external organisations to launch from their own Learning Management Systems (LMS)

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