Caring for people in the last days and hours of life: National Statement
Caring for people in the last days and hours of life: National Statement
In December 2013 the Scottish Government accepted the recommendation that the Liverpool Care Pathway (LCP) should be phased out in Scotland by December 2014. This statement confirms the current position.
Health and Care providers across Scotland are committed to the provision of consistently high quality end of life care for all that reflects the 4 principles set out in the guidance 'Caring for people in the last days and hours of life' published at the end of 2013 -
Principle 1: Informative, timely and sensitive communication is an essential component of each individual person's care
Principle 2: Significant decisions about a person's care, including diagnosing dying, are made on the basis of multi-disciplinary discussion
Principle 3: Each individual person's physical, psychological, social and spiritual needs are recognised and addressed as far as is possible
Principle 4: Consideration is given to the wellbeing of relatives or carers attending the person.
That Guidance and associated principles are now confirmed as the framework for further planning and development at a local level across Scotland.
The purpose of this statement is to:
- support NHS Boards and all health and care providers develop, test and implement identification, assessment and care planning materials, policies and guidance to deliver consistently high quality care for all in the last days and hours of life.
- suggest that NHS Boards and all health and care providers use the driver diagram as set out at Annex A to begin to assist with thinking about change and improvement actions to support this work.
- provide an update on the work being taken forward by NHS Education Scotland (NES) to establish a portal within the NES Clinical Knowledge Publisher to access this Guidance. Further portal development work will enable local resources and examples to be posted and shared.
- describe some of the actions being taken centrally and locally to support further improvements in the quality of end of life care.
This statement can be used by stakeholders as the framework within which to further plan and develop local identification, assessment and care planning materials, policies and guidance for the provision of care in the last days and hours of life ahead of completing the phasing out locally of the use of the Liverpool Care Pathway at the end of 2014.
A copy of the full Guidance document can be accessed at http://www.scotland.gov.uk/Publications/Recent
The target audience for this statement is health and social care staff involved in providing care for people in the last days and hours of life and their families. Adhering to the principles will support staff in the provision of good care for people in the last days and hours of life. The principles highlight essential areas of care for teams to address when caring for dying people and those close to them.
This statement is also available to members of the public.
In December 2013, the Scottish Government accepted the recommendation from the Living and Dying Well National Advisory Group that the Liverpool Care Pathway (LCP) should be phased out in Scotland by December 2014. The collective aim of all health and care providers across Scotland is the provision of consistently high quality end of life care for all that reflects the principles. The drivers to achieve this aim are to build on and further develop education and training materials for the public and health and care professionals, improvement activities and scrutiny in this area working with patients/carers and the public, NHS Education for Scotland, Healthcare Improvement Scotland, NHSScotland, Care Inspectorate, Local Authorities, independent and third sector providers of health and care services.
This statement can be used by health and care providers to form part of their narrative supporting change, improvement and governance. The guidance is focused around an aim of providing care in the last hours and days of life, where all care needs are identified and effectively addressed through responsive and holistic care planning, reflecting the agreed principles of high quality care. The primary drivers of consistently achieving this aim are:
People will receive the information that they need and feel sufficiently informed and supported to make decisions.
People approaching the end of life and their families and carers are offered information, in an accessible and sensitive way in response to their needs and preferences and feel sufficiently informed about what they wish to know and supported to make decisions about their care.
Care is co-ordinated effectively across all settings, clinical and care disciplines and includes a focus on carers and relatives wellbeing.
This will mean that care is coordinated effectively across all relevant settings and services at any time of day or night, and delivered by practitioners who are aware of the person's current medical condition, care plan and preferences.
Assessment and care planning focus is holistic, anticipates and supports personalised action that meets all needs.
This recognises that people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, with the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.
People closely affected should receive support that is appropriate to their needs and preferences.
Delivering consistently high quality care is only possible when people are communicated with in a sensitive way, are offered immediate and ongoing emotional and spiritual support appropriate to their needs and preferences including bereavement support.
The links between aim and proposed primary drivers is outlined at Annex A. This driver diagram also proposes some secondary drivers that contribute to implementation of high quality care in the last days and hours of life. This is reproduced to illustrate the way in which NHS Boards and providers of care might wish to develop their local change packages and improvement actions in a way that is informed by nationally agreed principles and the aim of care provision at the end of life.
Whilst a lot of progress has been, made more can be done. Some of the actions and next steps being taken by organisations centrally and locally to help further improve the quality of end of life care is set out in the table below.
The Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, announced at the NHS event in June that: "we must do more to listen to, and promote, the voices of those we care for. We need the voices of our patients, those receiving care and their families, to be heard in a much clearer and stronger way".
The Scottish Government's ambition is to ensure that our services are co-produced with the communities they serve, build on people's assets and support the health and wellbeing of the whole person and their family. We believe this can only be achieved by creating a much stronger voice for people and communities using services.
This voice will be focused on improving outcomes, and it will have a key role in driving the future shape of health and social care services, both nationally and locally. Proposals for the Stronger Voice are being developed in a partnership involving the Scottish Government, Healthcare Improvement Scotland, the Scottish Health Council, COSLA and the ALLIANCE, and will be brought forward by the end of the year.
More information on the Stronger Voice is available on the Scottish Health Council website.
There are various systems and methods in place across NHSScotland that capture 'real time' information relating to people's experiences of local systems. Healthcare Improvement Scotland has developed a measurement framework for use by local teams involved in the Person-Centred Health and Care Collaborative, which includes measures that support teams to drive improvement in real time and develop a deeper understanding of what is working well and what needs to be improved.
The key surveys about quality of health care services are the National Patient Experience Surveys.
The Scottish Partnership for Palliative Care and Scottish Government are currently mapping out how best to support the public engagement work required, to help further inform and contribute to the development of future work in this area. This will likely include utilising already existing NHS Board Public Involvement mechanisms and consideration of any targeted approach.
Health and Care Providers
NHS Boards/Independent Hospices
NHS Boards and other health and care providers have been developing local assessment and care planning materials, policies and guidance. Some NHS Boards and Hospices have shared centrally the work they have been doing and this has been collated. NHS Education Scotland has established a portal within the NES Clinical Knowledge Publisher to access this Guidance. Further portal development work will enable local resources and examples to be posted and shared. This can be accessed at http://www.ckp.scot.nhs.uk/ScottishGovernmentGuidanceEndofLifeCare/?id=1045
Palliative and End of Life Care National Advisory Group
A new Palliative and End of Life Care National Advisory Group (NAG) met for the first time in November 2014.
The core NAG will be supported by a wider Stakeholder Group. This group will be facilitated by the Scottish Partnership for Palliative Care.
The Scottish Government will work with the new NAG in supporting key stakeholders to set out how they can apply the 'Three Step Improvement Framework for Scotland's Public Services' to the changes that they identify in support of the strategic framework.
NHS Board Palliative and End of Life Executive leads
A national meeting of NHS Board Palliative and End of Life Care Executive Leads was held at the end of September 2014 to help establish new arrangements to support engagement and leadership in this area.
Quality Improvement/Best Practice
Clinical Guidelines - Healthcare Improvement Scotland
Palliative care clinical guidelines in Scotland have been developed and are available via the Healthcare Improvement Scotland (HIS) website. These provide practical, evidence based or best practice advice on the management of pain, symptom control, palliative emergencies and end of life care in a readily usable format.
They help to provide the evidence base for improvements in palliative care services across all health and care settings. It is recognised that publication of these guidelines is not an end in itself. Work needs to continue to explore how best to design and develop measurement and quality improvement capacity nationally and locally linked to the content of the guidelines.
HIS is developing a light touch process to ensure the currency of these guidelines in the future
Anticipatory Care Planning/Conversation Ready
Three Scottish NHS Boards have been working throughout 2014 as test sites with the Institute for Healthcare Improvement (IHI). The context for this work is framed by caring for people in the last days and hours of life guidance and the 4 principles.
They have developed local improvement projects working within 5 core IHI project principles to:
This work is due to report towards the end of 2014/early 2015 and, together with other improvement work ongoing across Scotland, will be shared widely.
The importance of data in order to measure improvements and change practice is well recognised. Work is underway, led by Healthcare Improvement Scotland to identify a Palliative and End of Life measurement framework that links to existing national improvement programmes of work e.g. deteriorating patient; cardiac arrest and person-centred programmes.
Education and Training
Work with colleagues from NHS Education for Scotland and education providers across Scotland to build on and develop education and training for palliative and end of life care.
Caring for People in the Last Days and Hours of Life Guidance is easily accessible to staff via the NES Clinical Knowledge Publisher website (available at http://www.ckp.scot.nhs.uk/ScottishGovernmentGuidanceEndofLifeCare/?id=1045) along with associated links to education and learning materials. This will help embed this work in the improvement agendas being pursued locally.
The Scottish Government has agreed to support the development of a Strategic Framework for Action providing a renewed focus to further support high quality palliative and end of life care.
The development of the Strategic Framework for Action, will be linked with the 2020 Vision for Health and Social Care, ensuring that the Scottish Government's commitment to high quality palliative and end of life care for all is clear to everyone.
Email: David Leslie