Dignity in Care INTEGRATED CARE PATHWAY FOR THE ADULT DYING PATIENT IN CARE HOMES Julie Williams Macmillan Nurse Specialist for Palliative Care Education in Nursing Homes 10th July 2009

Dignity in Care AIMS OF THIS PRESENTATION To introduce the Integrated Care Pathway (ICP) for the adult dying patient Describe and outline how the pathway fits with the wider national agenda To discuss the results of the ICP Pilot Baseline Audit To inform about the Implementation of ICP locally

Dignity in Care INTEGRATED CARE PATHWAY (ICP) A DEFINITION An integrated care pathway determines locally agreed multidisciplinary practice, based on guidelines and evidence where available, for a specific patient/client group. It forms all or part of a clinical record, documents the care given and facilitates the evaluation of outcomes for continuing quality improvement”. (National Pathways Association 1998)

Dignity in Care What is the ICP? It was developed and initiated by the palliative care team in Liverpool. Liverpool Care Pathway (LCP) It has been adapted for local use (ICP) A map/tool/framework for the delivery of planned care to the resident during the dying phase It is a multi-professional document Provides a method of coordinating and standardising care – reducing practice variations

Dignity in Care What is the ICP? An evidence-based legal document, incorporating guidelines which reflect current good practice Provides a mechanism for continually monitoring and evaluating processes, practices and outcomes of care delivered It details tasks, sequences and timescales. It has been developed to transfer to all care settings.

Dignity in Care The ICP is NOT A criticism of current practice Totally prescriptive Just a nursing document Undermining of professional knowledge, skill and competence Complicated WRITTEN IN STONE

The End of Life Care Strategy (2008) States Dignity in Care How the ICP Relates To The National Agenda For End Of Life Care The End of Life Care Strategy (2008) States “ Good Primary Care Trusts will want to ensure that the particular needs and wishes of all people who are dying should be identified and addressed. The Liverpool Care Pathway provides a well established mechanism for achieving this. Primary Care Trusts are therefore strongly recommended to ensure that the Liverpool Care Pathway is adopted and its use audited in all locations where people are likely to die.” All national recommendations have highlighted the importance of choice and an integrated health and social care approach to end of life care

Dignity in Care How the ICP Relates To The National Agenda For End Of Life Care The Cancer Plan (2000) National Service Framework for Coronary Heart Disease (2000) National Service Framework for Older People (2001) The Gold Standards Framework (2003) Cancer Services Collaborative Improvement Partnership (2003) National Service Framework for Renal Services (2004) National Service Framework for Long Term Conditions (2005) Our Health, Our Say (2006) Building on Firm Foundations- Improving end of life care in care homes (2007) End of Life Care Strategy (2008)

Dignity in Care Why implement the ICP in Care Homes? People are living longer, with the percentage of deaths amongst those aged 85 and over rising 58% of deaths occur in hospitals (2008) 64% of patients would prefer to die in their own homes (2004) 17% deaths occur in care homes collectively accounting for around 35% of all deaths (based on ONS figures for 2004)

Dignity in Care Why Implement the ICP in Care Homes? To enable residents to die peacefully in their home Reduce crisis admissions to hospital in the dying phase To enable relatives and carers to provide care, be kept informed and have positive lasting memories if possible Staff involved have a sense of satisfaction that a “good death” has been achieved

Dignity in Care Benefits of using the ICP in Care Homes Promotes proactive high quality, efficient, effective and equitable care Enhances good communication and teamwork Gives permission to discontinue regimes Informs on symptom control It can save time and reduce documentation. It helps prevent crisis intervention

Dignity in Care Benefits of using the ICP in Care Homes Empowers and increases staff competence and confidence in caring for dying residents and their families Sensitive, One record Up to date - provides evidence of quality care given to residents and families It can highlight and identify education, training and resource needs. It promotes the effective use of resources It can prevent repetition It provides data for audit and reflective practice

Dignity in Care Considerations For Inclusion On The On The ICP The resident has a known irreversible life threatening illness of any aetiology. Reversible causes for the resident’s current deterioration have been considered and appropriately managed. Intensive care and resuscitation have been discussed by the team and have been deemed inappropriate.

Dignity in Care Criteria For Inclusion On The ICP The Multidisciplinary Team has agreed that the resident is dying and 2 of the following apply The resident is bed bound The resident is semi-comatose The resident is only able to take sips of fluid The resident is no longer able to take tablets

Dignity in Care Components Of The ICP Initial assessment Ongoing assessment and documentation of care on a 4 and 12 hourly basis Outcome Measures (Goals) for each section Variance recording Goal Achieved (A) Goal not achieved (“V” for Variance)

Dignity in Care Components Of The ICP Multidisciplinary communication/progress record sheets Information for family and carers Care after death Guidelines for staff Symptom control Guidelines

Dignity in Care How is the ICP being implemented in Local Care Homes? ICP document and accompanying information leaflets ratified by PCT Piloting in 4 GSF accredited Nursing Homes in Kirklees Education delivered to ALL care home staff prior to ICP implementation Liverpool Care Pathway National team involved in support with data analysis

Dignity in Care Key Findings from Baseline ICP Audit Documentation from 4 Nursing Homes audited 20 Deaths in each home (Total 80 ) Deaths that occurred : Men -20% Women -80% Age range of residents that died : 65years to 103years

Dignity in Care Key Findings from Baseline ICP Audit Diagnosis of Residents that died: - Dementia including Alzheimer’s disease - 43.75% - Cancer - 11.25% - Long Term Conditions - 45% (Including Stroke, COPD, Heart Failure & Circulatory problems Renal failure, Neurological conditions & old age )

Dignity in Care Key Findings from Baseline ICP Audit Not for CPR documented 70 - 85% Family/Other aware of diagnosis documented - 80 - 95% Family/Other aware patient dying documented - 55 - 80 % GP aware of Patient’s condition documented– 55 – 85 % Plan of Care explained to Family documented– 55- 75% GP practice aware of death documented– 80 -100%

Dignity in Care Key Findings from Baseline ICP Audit Anticipatory drugs were prescribed when residents referred to Specialist Palliative Care team Residents with cancer had anticipatory drugs prescribed Majority of residents with dementia and long term conditions did not have anticipatory drugs prescribed.

Dignity in Care Where next with the ICP Implementation? Completed pathway data from the pilot areas will be analysed at Liverpool Participating Care Homes will be asked to give formal feedback to facilitators via questionnaire Feedback will be delivered to participating pilot areas following data analysis

Dignity in Care Where next with the ICP Implementation? Pilot documentation will be reviewed and amended if appropriate Train the trainer ICP ( Nominated ICP Lead in each Care Home) Pathways will then be audited annually Roll out ICP to further GSF accredited homes in Kirklees and Calderdale

“You Matter Because you are you And you matter to the end of life Dignity in Care “You Matter Because you are you And you matter to the end of life We will do all we can not only to help you die peacefully but also to live until you die” Dame Cecily Saunders ( Founder of the Modern Hospice Movement)

YOU WILL NEVER BE FORGIVEN YOU IF YOU GET IT WRONG

YOU WILL NEVER BE FORGOTTEN YOU IF YOU GET IT RIGHT

For further information Julie.williams@kirkleeschs.nhs.uk Rosaleen.bawn@kirkleeschs.nhs.uk www.lcp-mariecurie.org.uk www.endoflifecare.nhs.uk

Dignity in Care Thank You Any Questions?