Model content utilised work from Knowsley, Liverpool, Salford, West Lancs, Southport/Ormskirk PCTs NORTH WEST END OF LIFE CARE MODEL 1 2 3 4 5 Advancing disease 1 year+ Increasing decline 6 months Last Days of Life First Days of Bereavement 1 year+ Single Assessment process completed Carer need assessment completed GSF/KITE initiated Advance Care Planning GSF/KITE meetings Prognosis communicated Key worker team nominated Patient-held record issued DS1500 completed ACP initiated OOH, informed of ACP Respite care arranged DNAR Initiated by GP Update NWAS with DNAR & Care Planning Info Anticipatory medications initiated Anticipatory medications supplied Fast track to fully funded Continuing Health Care Support arranged for provision of terminal care at home ACP reviewed Liverpool care of the Dying Pathway initiated Out of Hours updated Update NWAS Verification of death Certification of death completed registration Funeral Director Significant event analysis reviewed in MDT Care after death section of LCP goal 12 DWP1027 Notify NWAS Psychological support Ongoing bereavement support Counselling support Signposting to providers Supporting Documentation End of Life Care Competencies Training Communications Skills Training Psychological Support Training Information for Patient & Carer Mental Capacity Act Health and Social Care Processes / Services Final version 28 h April 2010 updated 20 th May 2011 1
The North West End of Life Care Model Advance Care planning has been defined as a process of discussion between an individual, their care providers, and often those close to them, about future care. The discussion may lead to: An advance statement of wishes and preferences: Example: the Preferred Priorities for Care (PPC) document is a patient held record that is designed to facilitate patient choice in relation to end of life issues. This document is helpful not only for the patient but for the professional as it aids discussion and ensures the wishes and needs of the patients fully discussed and addressed. An advance decision to refuse treatment (ADRT a specific refusal of treatment(s) in a predefined potential future situation): Example: A document is available and guidance can be sort for a professional on the National End of Life Care Programme website on how to action this. It is important that when this is raised by the patient they are fully informed and have mental capacity to make the decision(s) they desire. The appointment of a personal welfare Lasting Power of Attorney(LPA): Example: This is the person that a patient will choose and appoint to make decisions on their behalf about either their health and welfare or property and financial affairs or both. It is important that the patient is aware of this facility which ensures that if and when they are unable to make informed choices, their wishes and preferences are taken into consideration. All or any of these can help inform care providers should the individual lose capacity. These terms supersede previous phrases such as living wills and advance directives. Advance decisions to refuse treatment only come into force if an individual loses capacity. The presence of an ACP or ADRT document does not override the decision of a competent individual.ref- RCP Section 12; Concise Guidance to Good Practice Feb 2009 The model comprises five phases as described below with some examples of practice highlighted. The model of delivery advocated by the clinical pathway group uses a whole systems approach for all adults with a life limiting disease regardless of age and setting, moving from recognition of need for end of life care, to care after death. In order to apply the model, staff across organisations is required to understand the needs and experiences of people and their carers. The pathway model identifies five key phases: Final version 28 h April 2010 updated 20 th May 2011 2
1. Advancing disease timeframe 1 year or more. Example of practice required -the person is placed on a supportive care register in General Practitioner (GP) practice/care home. The person is discussed at monthly multidisciplinary practice/care home meetings. The patient is put on the Gold Standards Framework(GSF) or Keeping Improving the Experience(KITE) 2. Increasing decline timeframe 6 months [approximate]. Example of practice required -. DS1500 eligibility review of benefits, Preferred Priorities for Care (PPC) noted, Advance Care Plan (ACP) in place and trigger for continuing healthcare funding assessment. 3. Last days of life timeframe last few days. Examples of practice required - primary care team/care home inform community and out of hours services about the person who should be seen by a doctor. End of life drugs prescribed and obtained, and Liverpool Care Pathway (LCP) implemented 4. First days after death timeframe first few days. Examples of practice required include prompt verification and certification of death, relatives being given information on what to do after a death (including D49 leaflet), how to register the death and how to contact funeral directors 5. Bereavement timeframe 1 year or more. Examples of practice required include access to appropriate support and bereavement services if required. 1 2 3 4 5 Advancing disease Increasing decline Last Days of Life First Days after Bereavement 1 year 6 months 1 year + The North West End of Life Care Model Final version 28 h April 2010 updated 20 th May 2011 3
Advance Care Planning Resources List Capacity, care planning and advance care planning in life limiting illness A Guide for Health and Social Care Staff (May 2011) The differences between general care planning and decisions made in advance (17/3/10) Advance Care Planning A Guide for Health and Social Care Staff (2008) Planning For your Future Care A Guide (2009) National Council for Palliative Care and National End of Life Care Programme Advance Decisions to Refuse Treatment: A Guide for Health and Social Care Staff (2008) The Liverpool Care Pathway for the Dying Patient (LCP) provides an evidence based framework for the delivery of appropriate care for dying patients and their relatives in a variety of settings. www.mcpcil.org.uk The Gold Standards framework (GSF) is systematic evidence based approach to optimising the care for patients nearing the end of life delivered by generalist providers. The national GSF centre is hosted with the NHS by Walsall PCT in the West Midlands www.goldstandardsframework.nhs.uk National End of Life Care Programme Fact sheet 5: Preferred Priorities for Care an Advance Care Plan (2009) Preferred Priorities for Care (PPC) document is a patient held record designed to facilitate patient choice in relation to end of life issues. It originated in Lancashire and South Cumbria Cancer Network Final version 28 h April 2010 updated 20 th May 2011 4
Best Interests at End of Life Practical Guidance for Best Interests Decision Making and Care Planning at End of Life (2008) Central Lancashire PCT NHS East Lancashire Teaching PCT NHS Work commissioned by the Social care institute for Excellence www.cancerlancashire.org,uk Department of Health End of Life Care Strategy July (2008) Providing quality care for all adults at the end of life. www.doh.gov.uk Office of Public Sector Information Mental Capacity Act (2005) www.dca.gov.uk/menincap/legis.htmcode of practice The National Council for Palliative Care Mental Capacity Act in Practice: Guidance for End of Life Care March (2008) The National Council for Palliative Care Good Decision Making the Mental Capacity Act and End of Life Care (2009) www.ncpc.org.uk Royal Society of Physicians No 12 in the Concise Guidance to Good Practice Feb (2009) Advance Care Planning National Guidelines www.rcplondon.ac.uk Definitions NWAS OOH DS1500 MDT North West Ambulance Service Out of Hours Benefits for the Terminally Ill Multi-Disciplinary Team Final version 28 h April 2010 updated 20 th May 2011 5