Palliative and end of life care: strategic framework for action

Introduction

1. The 2020 Vision for Health and Social Care describes a health and care system that is focused on prevention, anticipation and supported self-management. We want people to be supported to live – and die – well, on their own terms with whatever health conditions they have.

2. The Strategic Framework for Action on Palliative and End of Life Care sets out the approach and our shared vision for people in Scotland where by 2021 everyone who needs palliative care will have access to it.

3. This will mean:

• access to palliative and end of life care is available to all who can benefit from it, regardless of age, gender, diagnosis, social group or location.
• people, their families and carers have timely and focussed conversations with appropriately skilled professionals to plan their care and support towards the end of life, and to ensure this accords with their needs and preferences.
• communities, groups and organisations of many kinds understand the importance of good palliative and end of life care to the well-being of society.

This Framework outlines the areas where the Scottish Government will work with partners to support collaboration and co-operation across organisations, reflecting our approach to improving public services and the move away from managerialist approaches. It is the start of a process that will see the development of an implementation plan that will outline specific actions, timescales and roles for all the organisations that will need to work together to make the vision a reality for everyone.

The approach of the Framework is to help ensure that the wellbeing of people, families and carers is supported, even as health declines. It should enable people to die well, and support those who are bereaved. The Framework outlines the Scottish Government’s commitments to support staff to implement a co-ordinated series of actions that are focused on improving access to high quality palliative and end of life care.

“I did feel a bit abandoned and a bit scared… the middle of the night is a very terrifying place to be in when you’re not sure what to do.” (Bereaved carer of husband who lived with cancer - from Marie Curie’s Changing the Conversation http://www.mariecurie.org.uk/change)

The Framework sets out the context, challenges and commitments that will support the improvements required in the delivery of palliative and end of life care in Scotland. An accompanying evidence summary document sets out the issues and challenges in more detail and should be used to inform the development of improvement plans and change processes.

The Framework sets out the Scottish Government’s commitments in support of the continuous improvement in the quality of palliative and end of life care, reflecting the commitment to the quality ambitions outlined in the Healthcare Quality Strategy (2010), the National Performance Framework Outcomes and also the National Health and Wellbeing Outcomes (Annex A). It is part of the Scottish Government’s transformational change programmes and is consistent with the emphasis that will feature in the National Clinical Strategy.

Context

This ‘Wordle’ diagram was generated from text provided from the website patientopinion.org.uk from stories that were published which relate to palliative care in Scotland. This diagram relates to the words that were mentioned when people described how they felt about palliative and end of life care.

4. In Scotland around 54,000 people die each year and over 200,000 people are significantly affected by the death of a loved one. In general we are dying at older ages, sometimes accompanied by frailty, dementia and multiple other conditions. Driven by population growth, the number of people dying each year will begin to rise from 2015. By 2037 the number of people dying each year will have have gone up by 12% to 61,600. It is thought that up to 8 out of 10 people who die have needs that could be met through the provision of palliative care.

5. A number of definitions have been proposed to define palliative care, including two by the World Health Organisation (Annex B). Palliative care is essentially support to prevent and relieve pain and suffering throughout any serious illness as well as where death is impending, and in bereavement. It starts with families and communities, working with health and social care professionals, some of whom are specialists in palliative care. Palliative care is an approach that improves the quality of life of adults, babies, children and their parents, families and carers when they are facing problems associated with life-limiting conditions. It works through early identification, assessment and treatment of pain and other physical, psychological, social or spiritual problems.

6. Palliative care can be delivered in any setting but is mainly organised through primary and home care, nursing/care home, hospice and hospital services. It has proven value, is a human rights, public health and equalities issue, and the need for it is growing with the ageing population. Scotland has a good record of delivering high quality palliative and end of life care. There are strong primary and secondary care systems, supportive communities, a vibrant third and independent sector along with access to a wide range of information and help through print and electronic media.

7. We know however that there are currently people in Scotland who could benefit from palliative care who do not receive it. There will also be a rising demand for palliative care services in the future.

“My overwhelming impression is that there’s lack of consistency. It all depends where you live.” (Bereaved carer of daughter who lived with cancer - from Marie Curie’s Changing the Conversation http://www.mariecurie.org.uk/change)

8. Palliative care and care at the end of life needs to be responsive to the changing preferences and priorities of people with advanced illness and their carers. All health and care workers require an appropriate level of knowledge and skill in palliative and end of life care. Holistic high quality care must be delivered for everyone in accordance with the appropriate legal, professional, clinical and care standards.

9. Meeting more people’s palliative care needs in Scotland will require greater support to help people talk sensitively, openly and honestly about deteriorating health and death. Communication can sometimes be poor and anticipatory care planning has not always been as good as it could have been. Documenting, reviewing, updating and sharing decisions and preferences makes it more likely that the care provided will be person-centered and reflect what someone needs and wants.

10. Currently a person’s diagnosis or condition significantly influences the care and support they can access, where they are cared for and funding for their support and accommodation. There can also be inequalities arising through socioeconomic and educational disadvantage, and associated with particular individual characteristics such as age, ethnic group, religion or belief and sexual orientation. Particular groups in society may also be disadvantaged, such as people who are in prison or who are part of a travelling community. There are also issues when considering the transition to adult services for young people with palliative care, respite and support needs.

“Watching your mum deteriorate and become a shell of her former self with a degenerative palliative brain disease is awful, however the comfort given knowing that my mum is loved and cared for goes a long way.” (Comment submitted to Patient Opinion - http://www.patientopinion.org.uk)

11. Palliative care must also involve consideration of the needs of the thousands of unpaid carers, their families and others within communities who support people at the end of their lives. This includes parents who become full-time carers when looking after their child with a life-shortening condition and the emotional impact this can have on them and the child’s siblings.

Challenges

12. Measurement and Monitoring - It is not currently possible to describe comprehensively how palliative care is being provided or experienced by those who receive it across Scotland. Measurement and monitoring are not yet embedded in routine clinical processes and practice. This makes it difficult to identify where to focus improvement support or describe the ways in which existing work is making a positive difference to individual and family outcomes.

13. Medicalisation of Death - Current attitudes to death and dying influence the ways in which the health and social care delivery system can meet Scotland’s growing need to provide more people with access to improved palliative care. Social and cultural change has resulted in a ‘death-denying culture’ and the medicalisation of death. An entire generation has come to expect that all aspects of dying will be taken care of by professionals and institutions, potentially undermining personal and community resilience in coping with death, dying and loss as part of the ‘cycle of life’.

14. Communication - Not everyone wishes to openly discuss death and end of life issues. Information provision, health literacy, culture and belief systems will all influence whether and how such discussions take place. Professionals need to be sensitive to people’s beliefs and also their health literacy needs, so that barriers to communication can be removed. People may wish to be more involved in conversations about care and support planning than their confidence, understanding, knowledge and skills currently allow them to be.

“The nursing staff offered every opportunity to be with our mum in her final days, they made sure she remained comfortable and she was treated with dignity throughout her short stay. The medical staff also took time to clearly explain her deterioration and what to expect in the coming days.” (Comment submitted to Patient Opinion - http://www.patientopinion.org.uk)

15. Education - Generalists and specialists (of various kinds) deliver palliative and end of life care across many settings. Clarity about their differing roles and responsibilities is lacking. Challenges have also been apparent in accessing education and training, often due to difficulties in releasing staff from their clinical and caring duties.

16. Identification – There are variations in access to palliative care by condition, age, location, ethnicity and the identification challenges posed by multiple medical conditions. Longer periods spent living with life-limiting illness can make it difficult to know when the time is right for professionals to introduce a palliative care approach. This can present difficulties for the families of those involved. Improvement actions focused on these areas will be essential to ensure that everyone has access to high quality palliative care.

Commitments

The Scottish Government is committed to working in partnership to support a range of improvements in the delivery of palliative and end of life care in Scotland. These commitments focus on broadly defined aims where evidence and feedback have demonstrated that actions need to be targeted.

The Scottish Government’s commitments will support:

• Improved identification of people who may benefit from palliative and end of life care.
• An enhanced contribution of a wider range of health and care staff in providing palliative care.
• A sense among staff of feeling adequately trained and supported to provide the palliative and end of life care that is needed, including a better understanding of how people’s health literacy needs can be addressed.
• A greater openness about death, dying and bereavement in Scotland.
• Recognition of the wider sources of support within communities that enable people to live and die well.
• Greater emphasis in strategic plans, research activities, quality of care reviews and improvement support programmes on enhanced access to high quality palliative and end of life care.

The delivery of these aims will be made possible through:

• A series of implementation plans that outline local improvement aims.
• A set of actions focused on change and improvement.
• Nationally co-ordinated monitoring and support of quality improvement activity.
• Additional funding of £3.5 million

This will ensure:

• People receive health and social care that supports their wellbeing, irrespective of their diagnosis, age, socio-economic background, care setting or proximity to death.
• People have opportunities to discuss and plan for future possible decline in health, preferably before a crisis occurs, and are supported to retain independence for as long as possible.
• People know how to help and support each other at times of increased health need and in bereavement, recognising the importance of families and communities working alongside formal services.
• People access cultures, resources, systems and processes within health and social care services that empower staff to exercise their skills and provide high quality person-centred care.

Improvements are urgently needed in the reliable identification of people who might benefit from palliative care. More conversations about future care preferences and arrangements and improved arrangements for accessing information to deliver high quality palliative and end of life care will be required.

Commitment 1. We will support Healthcare Improvement Scotland in providing Health and Social Care Partnerships with expertise in testing and implementing improvements to identify those who can benefit from palliative and end of life care and in the co-ordination of their care.

Health and Social Care Partnerships will play an increasingly important role in the commissioning and delivery of palliative and end of life care services. Commissioning plans should reflect the importance, value and specific contributions of palliative and end of life care in delivering the national outcomes for health and social care. The focus must be on how health and social care integration will improve the organisation and delivery of palliative and end of life care within hospitals and communities, including hospices, care at home, in care homes and other relevant social care services.

Commitment 2. We will provide guidance to support Health and Social Care Partnerships with the development of the content of their Strategic Commissioning plans in relation to palliative and end of life care services.

Scotland must ensure that it has a trained workforce to deliver palliative and end of life care and that informal carers, family members and volunteers also have access to support, education and guidance that can enhance their contribution. This will include the development of defined core competencies in palliative and end of life care expected for all roles within the health and social care system. This will be linked to descriptors of attainment.

Commitment 3. We will support the workforce by commissioning NHS Education for Scotland and the Scottish Social Services Council to develop a new palliative and end of life care Educational Framework. This will address the needs of the health and social care workforce and will be focused on fostering an integrated and collaborative approach to educational provision.

Children’s palliative care is part of good medical care, and is delivered across primary, secondary and tertiary care, as well as in children’s hospices. Currently most end of life care for children is delivered in the hospital environment. The prevalence of children and young people (aged 0 – 25 years) with a life-shortening condition in Scotland has risen between 2003/4 and 2013/14.

Commitment 4. We will support children and families by promoting the further development of holistic palliative care for the 0 - 25 year age group, recognizing that many of their needs may differ from those of adults.

A strategic approach needs to be taken to develop a sustainable and innovative national programme of palliative and end of life care research that directly informs clinical practice and policy by focusing activity on priority areas. A new research forum will provide a platform to share emergent examples of good practice and experience of what works, for whom and why, facilitating knowledge exchange, informing evidence-based decision making and driving quality improvement.

Commitment 5. We will strengthen and co-ordinate research and knowledge exchange across regions, institutions and disciplines by taking further action to support the establishment of a Scottish Research Forum for palliative and end of life care.

There are opportunities for strategic engagement to (re)frame public discourse around death, dying and loss. The goal is to spread at scale a culture of openness about dying, death and bereavement in Scotland, finding opportunities to work with social and mass media and wider publics, across educational establishments, business, faith groups, community organisations and creative industries. It is now widely accepted that palliative and end of life care are matters of public health. Fostering public health interventions to support palliative and end of life care will be important to the success of the Strategic Framework for Action.

Commitment 6. We will support greater public and personal discussion of bereavement, death, dying and care at the end of life. This will include commissioning work from public service agencies outside of health and social care such as schools, colleges and prisons. Local plans to enhance the public health focus of public health professionals on palliative care will also be supported.

There is a need to identify how electronic systems can best ensure that care planning conversations are effectively recorded and appropriately shared through electronic systems. The future requirements of electronic systems for wider access to information, extended information content and new functions, such as write access by multiple sources, must take account of requirements for improvement in palliative and end of life care. Continued access to the Key Information Summary and the Emergency Care Summary needs to be maximised.

Commitment 7. We will improve the ways that information is recorded and shared by seeking to ensure that the requirements for future e-Health systems support the effective sharing of individual end of life/Anticipatory Care Planning conversations and care preferences, while also addressing the need for improvement in the systems that are currently used.

There is limited evidence to support which specialist palliative care models are effective and cost effective across different care settings and needs. Adult palliative care clinical guidelines have been developed, though variation in implementation of these exists and reliability of implementation needs to be enhanced.

Commitment 8. We will support national and local planning and commissioning by supporting clinical and health economic evaluations of new and emerging models of palliative and end of life care delivery.

There is a need to develop and enhance indicators and measures that can be embedded in routine care to support the design, delivery, monitoring, quality improvement and benchmarking of services. These should ensure that people’s experience is appropriately captured and informs future development. Data on quality of care must be capable of outlining the way in which access to high quality palliative and end of life care is continuously improving across Scotland for everyone.

The way in which these data will be used should be aligned with existing performance and national health and wellbeing outcomes and related delivery frameworks, outlining the ways in which improvement actions across national programmes contribute to improved palliative and end of life care.

Commitment 9. We will ensure that data and evidence – including people’s accounts of their experience of care – is used effectively to inform learning, improvement and the spread of high quality care by supporting improvements in the collection, analysis, interpretation and dissemination of data and evidence relating to needs, provision, activity, indicators and outcomes in respect of palliative and end of life care in Scotland.

We will establish a National Implementation Support Group to support and co-ordinate the resources and infrastructure required to develop specific implementation plans focused on the measurement of change.

These will be developed by April 2016 and will outline the aims, specific actions and timescales required across a range of organisations involved locally and nationally in delivering the commitments outlined in this Framework. This Group will also, through existing accountability mechanisms and arrangements, provide advice to the National Advisory Group for Palliative and End of Life Care on the effectiveness of implementation against the Scottish Government’s commitments.

This new National Implementation Support Group will report to the National Advisory Group for Palliative and End of Life Care and have strong representation from the Palliative and End of Life Care Stakeholder Group.

This Group will not be a monitoring group. It will focus on facilitating learning and identifying the actions required to support the spread of improvement across the country. It will produce an annual national overview outlining the learning and improvements undertaken against each of the Scottish Government’s commitments.

Commitment 10. We will support the implementation of improvement actions to deliver these commitments by establishing a new National Implementation Support Group involving a wide range of partners.

This Wordle diagram was generated from text provided from the website patientopinion.org.uk from stories that were published which relate to palliative care. This diagram relates to the words that were mentioned when people described what was positive about their experience of palliative and end of life care in Scotland.