End of Life Care

1. End of Life Care Annamarie Challinor Macmillan End of Life Programme Lead East Cheshire Trust

2. Objectives of the workshop; • Raise the profile of end of life care across ECT • Deliver an overview on the end of life care service model • Share some of the outcomes from the model • Describe some of the current projects underway • Outline potential cost savings

3. Putting End of Life Care into context.....

4. Everybody’s business..... • Average 4,400 deaths per year • Fastestgrowing ageing population in N/West • 80% of the population increase aged 65 and over. • Above UK average life expectancy   • 35,000 people not in good health with long term illness • Heart disease and cancer biggest cause mortality

5. End of Life Care inAcute Hospitals; • 70% would prefer to die at home only 18% do so • 40% people dying in hospital have no medical need to be there • Current trends suggest 20% increase in institutional deaths by 2030 • 54% Acute hospital complaints relate to end of life care • A proportion of patients dying in hospital receive very poor care without optimal symptom control

6. Facilitating best practice in End of Life Care conventional approaches • Prior to 2009 this was led by a number of single and temporary post-holder’s who were; • Externally funded • Promoting use of one of the end of life tools only • Employed to work within either the acute trust only or Community only

7. Drawbacksexperienced: • Heavy reliance on one individual • Lack of continuity across care settings • (which our patients frequently traverse) • Over-emphasis on healthcare • Lack of sustainability and ownership from within the organisation • Restrictive & unrealistic facilitator project timeframes

8. What did this lead to? • Isolated areas of best practice • Disjointed and uncoordinated approach • Difficulties with recruitment & retention of facilitator’s • Failure to address a whole systems approach • No change in the culture of care- tendency to blame systems of others • Patchy/ lack of use & application of end of life care tools • Disempowered staff (we have been here before...)

9. Some ultimate consequences for the patient & their family: • Failure to meet Preferred Priorities for Care (PPC) • Inappropriate admission to hospital (especially from care homes) • Poor coordination and planning of care • Late recognition of end of life patients • Ineffective symptom management • Inappropriate treatment’s and interventions • Increase in complaints • Carer burden • Impact upon the bereavement process

10. Strengths of the old approach; East • Location of the facilitator more visual and accessible therefore more responsive • Dedicated and protected facilitator time • Ability to work across organisational boundaries • Wearing a ‘NHS/PCT hat’ helps Central • Strength in numbers • Underpinned by a strong educational ethos • Strong affiliations with supporting networks • Looked upon as the ‘experts’

11. However; • Both approaches operated separately and lacked integration and cohesiveness. • Loss of the single post-holder resulted in lost momentum, motivation and discontinuity in one sector • The education team/organisational approach lacked dedicated time and continued funding • There was a total reliance upon external funding from the cancer network to continue facilitation

12. Therefore; • We needed to promote equity across the locality by sharing best practice across organisational boundaries so that wherever the patient was being cared for and whatever their condition, their end of life care was consistently good • We needed to make best use of existing resources & funding.

13. Developing the model; • Model Diagram to provide visual clarity • Mindful of locality based issues (East & Central) • Supportive of a coordinated & streamlined approach across the PCT • Enable the sharing of best practice • Promote local ownership/ sustainability • Responsive to traditional boundaries/ barriers • Inclusive of all care settings/ disciplines • Led by expert clinicians from cancer & non cancer specialities • Underpinned by bespoke education • Cost effective and attractive to investment • A foundation Model with flexibility to change and expansion

14. Central & Eastern Cheshire End of Life Service Model Group B Workforce Cheshire Hospices Education St Luke’s Hospice Macmillan Team Specialist Teams East Cheshire Hospice Macmillan Team Specialist Teams

15. Central & Eastern Cheshire End of Life Service Model LINKS TO SOCIAL CARE Admin Support Group B Workforce Cheshire Hospices Education East Cheshire Hospice Macmillan Team Specialist Teams St Luke’s Hospice Macmillan Team Specialist Teams

16. The End of Life Service Model A local vehicle to deliver: • Both a bottom up and top down approach to priorities • A service which is visionary, complimentary and considerate of wider end of life initiatives (local, strategic and national) therefore reducing the likelihood of ‘reinventing the wheel’ or introducing costly & ineffective interventions • A service informed by an abundance of best practice • A service which is locally owned and developed • Audit & data collection • Clinical expertise and advice in end of life care • Bespoke education across organisations • Project management • A whole systems approach to service transformation

17. Someoutcomes since 2010 for East Cheshire Trust Acute & Community

18. Rapid Discharge Pathway Preferred Place of Care (Home) • Pathway to facilitate Rapid Discharge for those patients who are in the last days of life and who’s preferred place of care is home (including a care home) • Collaborative approach to development/ implementation & evaluation of the pathway • Involved community, acute, voluntary, NWAS & coroner 3 patient’s since April 2011 discharged on the pathway- feedback collated as part of ongoing audit from the receiving community team and from patient relatives

19. Use of the End of Life Pathway • Greater uptake of the End of Life Care Pathway (10.1% all deaths in 2008 to 23.2% +) • Increased length of time on the pathway • Increase in standards of documented care at end of life • Increase in proactive prescribing for potential end of life symptoms

20. Community data collection tool • Primary & community led • Captures patient end of life journey • Used as a reflective practice tool • 43/51 practices engaged/ participating • Data includes achievement of Preferred Place of Care (and challenges to achieving this), Out of Hours communication, Advance Care Planning, use of the end of life care tools including rationale for non use • 486 deaths captured 2010-2011 • Qualitative data to tell ‘real patient stories’

21. electronic Prognostic Assessment & Indicator Guide for End of life (e-Paige) Background of e-paige End of Life Education & Training Contribute to e-paige Evaluate this resource Further help and advice

22. BereavementOne year + Increasing Decline (less than 6 months prognosis) 2 3 4 5 1 First Days after Death Advancing disease Up to 1 year Increasing decline Last Days of Life Death • The following aspects of care should be considered for the patient with increasing decline in their illness; • Recognition by both the patient and the multi-professional team of the signs of increasing decline • Open and honest communication with both the patient and, where indicated, their significant others • Conduct a holistic assessment to ensure that the care and treatment delivered is based on need • Advance Care Planning discussions and documentation should include the management of both future crisis and sudden deterioration including the avoidance of inappropriate admissions to hospital • Optimisation of treatment will need to be considerate of disease type and the presenting symptoms • Coordination of care should include Specialist Teams,Primary & Community Care, and the wider • Multi-Professional Team • Consider whether carer supportmay be required when the patient is discharged home • The patient may be entitled to various means of financial support • Provide access to both national and local information which is tailor-made to the individual’s needs

23. Bereavement Resource • Combined community and acute booklet • Project collaborated with voluntary care, care homes and Leighton Hospital • Cheshire wide resource allowing a consistent quality of information to be delivered to the bereaved regardless of care setting • Inclusive of tear out feedback slip to measure qualitative data i.e. Were you given opportunity to speak with staff looking after your relative/friend

24. Communication Skills Training Strategy • Cost effective model making best use of available funds and skilled workforce • Central & Eastern Cheshire Wide • Self sustaining in the longer term • Competency based with associated learning outcomes • Facilitating a safe environment for attendees to explore communication challenges pertinent to their role • Focus on shift in culture as opposed to ‘tick box’ exercise

25. Award; Multi-disciplinary Team of the Year 2011(International Journal of Palliative Nursing)

26. Impact on patient care? • More timely and appropriate care • Better prognostication • Evidence based pathways • Fewer patients slipping through the net • Proactive as opposed to reactive care • More effective symptom management • Fewer inequities based on care setting or disease type • Wider disease groups benefitting • Raising the profile therefore quality of end of life care in all care settings • More skilled and competent workforce • More patients having their end of life preferences discussed • Better communication between patient and professional, and within and across organisations • Increased availability of patient and carer information • Better coordination and communication between and within services • Streamlined end of life care services • Increased possibility of dying in Preferred Place of Care

27. Cost saving? • Bed days- Rapid discharge, reducing • inappropriate admissions • Pathways- avoiding inappropriate & costly treatments and tests • Facilitator funding- more effective use of funding allowing consistency and continuity of projects • Reduction of waste in resources- in terms of staff time and from ‘re-inventing the wheel’ – doing things right 1st time • Potential cost generating - CQUIN’s/ KPI • Cost effective model – innovative & attractive to external funding

28. Alignment with Trust Objectives; • Continuously improve quality, safety and the patient experience • Supporting and developing staff to enable them to achieve their best • Achieving financial sustainability • Working with our partners to provide an integrated health service for our local population • Encouraging staff to be innovative when delivering and planning services

29. Thank you for listeningDo you have any questions? annamarie.challinor@nhs.net 07920 765269