Facilitator - Alison Doyle The North West End of Life Care Programme for Care Homes Facilitator - Alison Doyle

Induction Introductions Ground rules End of life care drivers The Route to Success in Care Homes Overview of Six Steps Programme Portfolios Change management Audit Cycle Group work The way forward

Objectives Identify National, Regional and Local end of life care drivers Understand the programme Commence the audit process Have an understanding of your role and responsibilities Commence an End of Life Care Policy

End of Life Care ‘Care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patients and family to be identified and met throughout the last phase of life and into bereavement. It includes the management of pain and other symptoms and provision of psychological, social, spiritual and practical support’ (National Council for Palliative Care) An active compassionate approach, encompasses support for families and carers.

Palliative Care - WHO 2002 Provides relief from pain and other distressing symptoms Affirms life and regards dying as a normal process Intends neither to hasten or postpone death Integrates the psychological and spiritual aspects of care Offers support system to help patients live as actively as possible until death Offers support system to help families cope

Palliative Care Team approach to address needs Will enhance quality of life, may positively influence the course of illness Applicable early in the course of the illness, with other therapies intended to prolong life, e.g., chemo, radiotherapy, investigations to better understand and manage distessing symptoms.

EOLC Strategy is 1 of 8 clinical pathways developed by each of the Strategic Health Authorities. It is the first comprehensive framework aimed at promoting high quality care across the country for all adults approaching the end of life. We know that although some people receive excellent care at the end of life, many do not. This is often because services are often disjointed and as a result communication between staff and agencies can break down. Public surveys show that we know that, given the opportunity and right support, most people would prefer to die at home. In practice, only a minority manage to do so. Many people die in an acute hospital, which is not their preferred place of care. Aim of the EOLC Strategy is to bring about better access to high quality care for all those approaching end of life, regardless of where they may be

End of Life Care Strategy 2008 1/2 million people die each year 58% deaths - hospital 18% deaths - home 17% deaths - care home 4% deaths - hospice Most people would prefer NOT to die in hospital But this is where most people die Around 1900 85% people died in their own homes. Why might this have changed? Large majority of deaths follow period of chronic illness, stroke, cancer, dementia, heart disease, copd, neurological disease. DEMOS - lot of these, arguably conditions of getting older, many medics would agree many causes of death = old age!

End of Life Care Strategy 2008 Vast majority of deaths = over 18yrs (99%) Most deaths occur in the over 65’s By 2030 - over 65yrs, 86% of deaths over 85 yrs, 44% of deaths Over 85 yrs = more likely to be in care home (currently) 1/5 NHS spending is on EOLC 40% who die in hospital don’t have medical conditions that medics can fight (Demos UK, 2010) Therefore numbers of people dying in care homes will substantially increase. So needs to be big investment in care homes.

End of Life Care Strategy 2008 AIM: Better access to high quality care at end of life Available wherever the person may be Achieved through 10 objectives

End of Life Care Strategy 2008 Objectives: Increase public awareness Ensure dignity and respect Optimum quality of life (symptoms) Access to holistic care services Needs identified, documented, acted on, reviewed Coordinated services Campaigns on dying, dying matters week, writing wills, T.V.

End of Life Care Strategy 2008 High quality care in last days of life and after death, in all care settings Carers supported Health care professionals supported with training and education Services - good value for money

NW EOLC Clinical Pathway Group Key recommendations: Robust integrated commissioning framework with strategic leadership in every PCT Quality standards and measures Raising public awareness Build on success of EOLC tools Advance Care Planning - all sectors Group of health and social care professionals, managers and members of public formed Commissioning - across all sectors, independent, voluntary, charitable, health and social care Quality standards and measures developed to support self assessment Public awareness - to encourage people to have conversations and really engage people ACP - all sectors, wishes and preferences identifies, shared recorded, accessible 24/7

NW End of Life Care Clinical Pathway Group Headline aim To reduce hospital deaths by 2012 by 10%

Devised the NW End of life care model, the story of a pts health with a life limiting illness from diagnosis to the end of their life can be seen in this model.

NHS Sefton EOLC Strategy Recognises palliative care - availability to non cancer patients More investment in services from NHS Implement NICE Guidance on Supportive & Palliative Care for Adults with Cancer 2004 Implement recommendations of NHS North West EOLC Clinical Pathway Group (Incl’ reducing hospital deaths by 10%) Increase use of nationally recognised EOLC tools (LCP 100% uptake) Cancer patients account for 95% of speciaist palliative bed usage and 90% of services are cancer specific. Now changing - big drives towards EOLC for other progressive incurable diseases, e.g., heart failure, copd, renal failure, dementia, M.S. MND Pall care services traditionally charitable,voluntary e.g., Hospices, Macmillan NICE - 20 key recommendations to ensure patients and families receive support and care througout illness, implementation complex - National Cancer Action Team have prioritised into TOP 10 standards

CQC

CQC (2010) End of Life Care Prompts Care Homes: Guidance for Inspectors How should a care home that provides end of life care support the person? CQC questions to consider… Do staff have knowledge & skills to identify EoLC needs. A relevant care assessment is in place Needs assessment reviewing, pain, tissue viability, nutritional needs etc Are residents and loved ones included in the decision making process. Are residents given the opportunity to discuss PPC Is there a policy & training for staff with clear records if a DNAR is recorded Do the staff use a pain chart Do documents used support end of life planning e.g. LCP The least possible disruption to the individual and their family and those close to them (see CQC Guidance for inspectors)

End of Life Care Quality Markers and Measures Care homes - Based on structures and processes of care likely to achieve good outcomes Consistent with holistic approach to care Designed as supportive guide Do not always require new ways of working/thinking 12 quality markers (generic) Quality markers dementia and end of life care (Living well with Dementia (DH, 2009) Quality markers do provide the structure for delivering high quality eolc for patients with dementia, but there are other points for consideration in dementia care. These quality standards offer dementia specific priorities which should be considered with the generic quality markers.

End of Life Care Quality Markers For Care Homes Action Plan for EOL Mechanisms to discuss, record wishes (ACP) Residents needs assessed and reviewed Nominate a key worker for each resident at EOL Residents who are dying are entered onto a care pathway Families and Carers are involved in decisions at EOL to the extent they wish Other Residents are supported following a death Quality of EOL care is audited and reviewed Process to identify training needs of all workers, common requirements – communication skills, assessment and care planning, ACP and symptom management Training needs addressed for those staff initiating ACP Aware and encourage attendance to EOL care training Review all transfers in and out of the care home at EOL

QIPP ‘One of the most significant NHS policies all organisations connected to the NHS will have to take on board’ Effects every department and individual Identification of efficiency savings Reinvestment to deliver quality improvements

QIPP Example Fractured neck of femur - redesign of service, improved quality by improving m.d. and cross agency teamwork = reduced mortality, reduced time to theatre earlier mobilisation, reduced length of stay reduced readmissions.

QIPP Quality Innovation Productivity Prevention Improve the resident and family experience of end of life care in a care home setting Enhance care delivery within the care home at end of life A skilled workforce Innovation A low cost Network EOL programme providing a consistent approach across PCT’s with a wide access to all care homes Can support care homes who currently have high recorded admissions to the acute sector for end of life care Develop a care home representative to take responsibility for the future development of end of life care provision in their care home Productivity Enhanced end of life care Enhanced MDT working Deliver choice at end of life Wider awareness and implementation of End of life care Development of PCT End of Life Care home representative Groups Address equity Prevention Reduction in hospital admissions at end of life from Care homes Reduction of isolated working

Six Steps Step 1 Discussions as the end of life approaches Step 2 Assessment, care planning and review Step 3 Co-ordination of care Step 4 Delivery of high quality care in care homes Step 5 Care in the last days of life Step 6 Care after death This is the pathway for quality in end of life care in your care home. The basis of this programme, by following the 6 steps, will guide you to developing your own EOLC policy through and enable to meet the DOH quality markers through a portfolio of evidence. Step 1 - will cover recognising when someone in their last year of life, able to recognise triggers,NW EOLC Model, EOLC register, regular team meetings to assess and review all residents, able to establish if someone wants to have discussions about future care? Buidling trusting relationships with resident and families. Action plan on how to implement ACP in care home Step 2 - Care plan - does it include all aspects of EOLC? Do you feel confident and skilled in supporting residents, families in establishing their wishes and preferences? How can we gather information from those who struggle to communicate? Can we holistically assess? Assessment of menatal capacity. System in place to review care? Documentation? Organise awareness sessions to introduce ACP. Step 3 - Communication system to share residents preferences and care plan? G.P., DN Mac, OOH’s? Responding rapidly to change in condition, essential EOLC meds? Drivers? Key Worker to act as link between services? Referals to key professionals to support EOLC. Use of NW EOLC checklist. Step 4 - Environment conducive to patient and rels at this time? Dignity, dignity champions,privacy. Ongoing training and support for staff, coordination of transfers, maximum level of control for residents re care as long as possible. Explore hospital transfer information. Significant event analysis. Training and education plan. Step 5 - Recognise change in condition - dying phase? Involving families - processes in place? LCP started? Spiritual, religious needs? Supporting families at this time? Involving them in care delivery, recording specific wishes, reducing hospital admission. Step 6 - supporting families, supporting other residents, Last offices guidance, bereavement support, supporting staff, aware of verification and certification policies. Post death audit info - ongiong. Some of you may already be doing some of these things, need to evidence in portfolio. Some may require more help than others if many systems not in place. May seem like lot of work - REMEMBER AIM OF THE PROGRAMME - HIGH QUALITY CARE AT ONE OF MOST IMPORTANT TIMES IN SOMEONES LIFE.

Managing Change Why change? Response to government initiatives Response to audit, reflective practice, complaints, critical incidents Diversity of patient demand

Barriers to Change Awareness, knowledge Motivation Acceptance and belief Skills Practicalities Awareness and knowledge of what needs to change and why are first vital steps in making change. Often people unaware of need to change, think it may compromise their automony, or it doesn’t apply to the people in their care. Not up to date with evidence based practice or governement initiatives. Motivation - internal and external factors to motivation. External e.g. regulatory body (CQC) neccesitates a change, internal - self motivation, drive and desire, may conflict with other priorities and commitments An persons personal beliefs and attitudes can significantly impact on the way they behave. Perceptions of benefits, financial and practical implications. May think the guidance does not reflect the evidence in practice, lack of self belief to make change happen. Learner anxiety - accepting something is wrong! Skills - may need further training, support to believe they can learn new skills and become competent. Practicalities - resources, staff, time, money. Maintaining change in long term can be difficult, priorities may change, Key staff may leave, keeping momentum going can be difficult.

Identify barriers to change Talk to key people Observe clinical practice Use of questionnaires Focus groups Brain storming

Change Models The 7 S Model 5 Whys PESTELI Force Field Analysis Using a model can help you to manage change by providing you with framework to work from. Many to chose from. No single method or stategy will fit all purposes. You may have your won model which has proven successful in the past, may want to try a new one. 7S Model - there are 7 aspects of an organisation that need, to point in the same direction like the needles of seven compasses. If each aspect supports the others then the organisation can be said to be ﾔorganisedﾕ. As each of these aspects can be titled with a word beginning with S this list has become known as the 7S Model. Strengths and weaknesses can be identified by considering the links between the S’s. 5 Whys - Ask why 5 times until get to root of the need for change, works better on smaller scale changes, but can be used for organisaitonal change - e.g., Why do we need to change the way we provide EOLC in our home? Pesteli - checklist for analysing the environment - political factors, economical influences, sociological trends, technological innovations Force Field analysis - driving and resisting forces, removing the resisting forces will help drive changes through

Ready for Change? What do your colleagues think? Conflict with other important initiatives? Identified key frameworks? Consider how change has been successfully implemented in the past, what works best? Leading your project - SWOT analysis Action plan Identify strengths and weaknesses in the organisation and as a leader, identify the threats and opportunities. Making change actually happen takes strong leadership with vision, able to pursue change through interpersonal relationships, ability to support others in difficult times of change. Action plan - Define what you are trying to achieve in your care home, identify the steps to implementation, timeframe for each step, who is responsible for implementing,monitoring, who will you need to include at each stage, how will you feedback what you have achieved.

Emotional Cycle of Change Panic Despair Blind optimism Cautious optimism Denial Confidence in the future Success

Attitudes to Change Innovators (venturesome) Early adopters (respectable) Early majority (deliberate) Late majority (skeptical) Laggards (traditional)

Managing Change “Involvement is the key to implementing change and increasing commitment….. It acts as a catalyst in the change process” (Covey, 1992) Discuss early on with your colleagues! Get them involved, cascade your workshops! Involve them in your portfolios

Resources www.nhsleadershipqualities.nhs.uk (LQF) www.nice.org.uk (How to change practice) www.sdo.nihr.ac.uk (Managing change in the NHS)

What is Audit? Simply put…. “A tool to aid you in improving patient care by looking at current practices and making changes where necessary”

Difference between Audit and Research Quest for new knowledge Seeks to define best practice ‘What is the right way?’ Audit Evaluates conformity with knowledge that’s has been tested and proven to be acceptable to the majority Seeks to evaluate if best practice is being delivered ‘Doing it right’

Simple Rules Clinical Audit Measures existing practice against evidence-based clinical standards Research Generate new knowledge where there is no or limited evidence available and which has the potential to be transferable. Service evaluation Service/practice evaluation evaluates the effectiveness or efficiency of an existing/new service/practice that is evidence based with the intention of generating information to inform local decision making. E.g. baseline audit, benchmarking, clinical effectiveness study. Clinical audit - proessionally led initiative where clinicians examine practice by systematically reviewing care against agreed explicit standards. Then make changes to practice where indicated. Review of literature, standards, guidelines, select and define method, design and pilot proforma, collect data, analyse, report findings, implement recommendations, re-audit. You will need to carry out base-line audit, simple proforma, no need to examine literature, standards,(already been done!). I will collect at next workshop and then you will continue to collect data throughout the programme. Will help to evaluate the effectiveness of the programme as data will demonstrate direct patient outcomes.

Audit Cycle

Why Audit? Consistency of care and treatment Improve access, equity of healthcare Improve quality and effectiveness of care Improve satisfaction Improve awareness of guidelines and standards Identification of training needs Quality assurance Risk management, reduction in complaints/litigation

Death and Dying Taboo Coped well in past How would most wish to die? How will most die if we don’t make changes? People need to talk about dying, not euphemisms ACP should be the standard Communities and society has coped quite well for centuries with dying. Only recently do we rely heavily on institutional professional solutions, costly and often inappropriate. Most people would want to be around loved ones, in a safe environment, pain free, with medical support when needed, without warning in sleep Reality is that most will have drawn out deaths, frail and suffering over many months with multiple chronic conditions. Need to get people to talk, otherwise trying to improve services will be pointless (kicking the bucket, popping clogs, final blow) But remembre not everyone will want to talk about it. But everyone should be offered opportunity. Talking about preferences and wishes, not a checklist or a one off exercise, not grand planning session, should be timely, friendly and low key.

What is a ‘good death’? Being treated as an individual, dignity and respect Without pain and/or other symptoms In familiar surroundings In company of close family and friends

What makes a good death? Exercise The Resident The Family The Carer

Expectations of an End of Life Care Home Representative Attend all of the Six Steps to Success workshops Take lead role, support and develop others in EOLC Keep knowledge and skills up to date Build resource files within the care home Produce a portfolio to evidence the implementation of the programme that could be shared with regulatory bodies(CQC), commissioners, social services Ensure EOLC tools promoted and used in care home To be a link with the local End of Life Care Facilitator Initiate change management within the home

End of Life Care Policy Each step will guide you with relevant information to help you develop a policy for end of life care in your care home. Will need to include areas covered in each step. Work in progress! Philosophy of care may be good place to start - do you have philosophy of care in your care home? Woodlands Philosophy

Summary End of Life Care Drivers Six Steps to Success programme Change management Audit Your role and responsibilities Portfolio of evidence End of Life Care Policy, philosophy To do

Any Questions?