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Living and Dying Well: A national action plan for palliative and end of life care in Scotland



1. The World Health Organization ( WHO) defined palliative care in 2004 1 as an approach that improves the quality of life of patients and their families facing the problems associated withlife-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. In 2004 WHO recommended that planning for care at the end of life should be responsive to patient choice regarding place of care and place of death. 2, 3

2. Palliative and end of life care are integral aspects of the care delivered by any health or social care professional to those living with and dying from any advanced, progressive or incurable condition. Palliative care is not just about care in the last months, days and hours of a person's life, but about ensuring quality of life for both patients and families at every stage of the disease process from diagnosis onwards. A palliative care approach should be used as appropriate alongside active disease management from an early stage in the disease process (See Figure 1). Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement.

Figure 1: Introducing Palliative Care

Figure 1: Introducing Palliative Care

Murray S, Kendall M, Boyd K and Sheikh A. Illness trajectories and palliative care. BMJ 2005 4; 330; 1007-1011 doi:10.1136/bmj.330.7498.1007 (adapted from Lynn and Adamson 2003).
Adapted from Lynn and Adamson, 2003. 5 With permission from RAND Corporation, Santa Monica, California, USA.

3. The Scottish Government action plan for health and wellbeing Better Health, Better Care, 6 published in December 2007, stated a commitment to the delivery of high quality palliative care to everyone in Scotland who needs it, on the basis of established principles of equity and personal dignity and of clinical need rather than diagnosis. Better Health, Better Care also stated the Scottish Government's intention to publish a plan during 2008 introducing for the first time a single, comprehensive approach to the provision of palliative care across Scotland. This plan also provides a basis for implementing the recommendations of the Scottish Partnership for Palliative Care 2007 report Palliative and end of life care in Scotland: the case for a cohesive approach. 7 To take this work forward, a National Clinical Lead for Palliative Care was appointed in March 2008 and an Executive Lead has since been identified within each NHS Board.

4. This publication, Living and Dying Well: a national action plan for palliative and end of life care in Scotland is the outcome of the resulting extensive process of collaboration across Scotland. This has included the involvement, among others, of all special and territorial NHS Boards, Scottish Government Health and Community Care national improvement programmes, the Scottish Primary Care Cancer Group, the Care Commission, the Scottish Partnership for Palliative Care ( SPPC), academic bodies, palliative care networks and key representatives of the voluntary sector, including voluntary hospices, national charities and umbrella bodies. A workshop for key stakeholders, including voluntary sector representatives and all NHS Boards, was held on3 June 2008. Throughout the process there has been strong support for the aims of the action plan and a shared commitment to planning together to achieve them.

5. Living and Dying Well is not intended to be a palliative care manual, but rather a plan to ensure that good palliative and end of life care is available for all patients and families who need it in a consistent, comprehensive, appropriate and equitable manner across all care settings in Scotland. It is intended for all health and social care policy makers, planners and practitioners, and is designed to produce achievable and measurable changes which will ensure quality improvement and enhance patient and carer experience. However, it does not yet have all the answers. Living and Dying Well identifies some changes which can be made in the short and medium term, and some which will take a little longer and will require further collaborative and developmental work, as well as additional input of time and resources.

6. Living and Dying Well also makes reference to and enables integration with a range of existing Scottish Government policy initiatives and improvement programmes. Its approach supports the development of a mutual NHS as described in Better Health Better Care and harnesses the skills, knowledge and experience of initiatives such as:

  • Long Term Conditions Collaborative Programme
  • Scottish Patient Safety Alliance
  • Shifting the Balance of Care
  • Joint Improvement Team
  • Better Together
  • Mental Health Collaborative Programme
  • eHealth Programme
  • Better Cancer Care Strategy
  • Rehabilitation Framework.

7. In so doing it avoids duplication of effort and resource, enhances collaboration and understanding, and encourages a view of palliative and end of life care as an integral part of healthcare and of the patient experience.

8. Living and Dying Well thus represents a cohesive and collaborative approach to the development and maintenance of equitable, high quality and sustainable palliative and end of life care services for the future. It is based on the principles of equality, dignity and quality and supports the national policy of empowering the diversity of patients, carers and the voluntary sector to be full partners in planning, improving quality and enhancing the experience of care. It takes account of the key messages and recommendations in the August 2008 Audit Scotland Review of Palliative Care Services in Scotland8 and advocates an approach to care which is person centred and based on neither diagnosis nor prognosis but on patient and carer needs. It advocates an approach which recognises the diversity of life circumstances of people who will need palliative and end of life care and which is responsive to these circumstances, whether they relate to age, disability, gender, race, religion/belief or sexual orientation 9.