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

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2. BACKGROUND

9. The population of Scotland is ageing. Figure 2 shows the projected percentage change in the age structure of Scotland's population between 2004 and 2031. Figure 3a and Figure 3b show the projected variation in age in Scotland between 1981 and 2031. Delivering for Health10 outlined the implications for Scotland's health and social services of a population living longer, but increasingly likely to be living with a range of long-term and progressive conditions.

Figure 2: The projected percentage change in age structure of Scotland's population, 2004-2031

Figure 2: The projected percentage change in age structure of Scotland's population, 2004-2031

General Register Office for Scotland. Scotland's Population 2006 - The Registrar General's Annual Review of Demographic Trends

10. Currently over 55,000 people in Scotland die each year. 11 Unlike the past, when many people died suddenly and at any age, largely from infectious diseases, the majority of deaths now are of people over the age of 65 and follow a period, possibly prolonged, of illness and/or frailty. This has wide-reaching implications for the type of care that will be required.

11. Patient and family experiences of death and dying are thought to be affected by the lack of familiarity with such concepts and events in our modern society. 12 Different generations are less likely to live together, and deaths are more likely to happen outwith the family home than in the past. The resulting cultural resistance to acknowledging the reality of death and dying as inevitable and integral parts of life and reluctance to discuss these, particularly in the context of a health service focussed on 'cure' rather than 'care', can contribute to poor communication and planning of end of life care. The SPPC report Public Awareness of Palliative Care (2003) 13 indicated that 70% of people in Scotland thought that as a society we do not discuss death and dying enough, and the time is now right to build on this implied willingness to engage with such issues in our service planning and delivery. The Department of Health 12 has announced the development of a national coalition in England and Wales to promote greater public awareness and discussion of issues relating to death and dying, and this action plan will include proposals for exploring these issues in Scotland.

Figure 3a: Population pyramid, actual (1981)

Figure 3a: Population pyramid, actual (1981)

Figure 3b: Population pyramid, projected (2031)

Figure 3b: Population pyramid, projected (2031)

General Register Office for Scotland. Scotland's Population 2006 - The Registrar General's Annual Review of Demographic Trends

12. Public attitudes to palliative and end of life care should emphasise its availability for all, the adoption of a holistic approach to a range of physical, practical and psychological needs, support for families, and the experience of being treated with respect and dignity. 12,14 The concept of a 'good death' as generally understood also emphasises respect and dignity, underpinned by the exercise of patient and carer preferences and choices and the provision of genuinely patient centred care. 15

13. The main causes of death in the UK - organ failure, cancer, dementia and/or, frailty - are fairly evenly distributed (See Figure 4). To date, however, the provision of specialist services for palliative and end of life care in Scotland and elsewhere is known to be directed mainly to people with cancer, with a greater range of services available to cancer patients and their families. 7,8 This is partly because the awareness of palliative care needs and the development of specialist palliative care expertise have historically been linked with the needs of cancer patients and with resources for cancer services. Current advances in knowledge and understanding mean that the valuable knowledge and experience gained can now be adapted and shared and people living with and dying from a range of other conditions can benefit from a palliative approach to their care.

14. The concept illustrated in Figure 5 identifies illness trajectories for cancer, organ failure and physical and cognitive frailty which show typical pathways experienced by patients with different conditions. Understanding the differences between these trajectories can help in planning services more appropriately to meet patients' and carers' needs. 4,17,18 Each trajectory indicates a different pattern, indicating periods of relative stability, of intermittent crisis and changing needs and of end of life care needs. The initial diagnosis of a life-limiting condition, together with critical events and changes in disease progression as indicated in the trajectories, should be recognised in all care settings as triggers for the introduction of a palliative care approach and the subsequent stepping up and stepping down to appropriate types and levels of care based on:

  • holistic assessment, with the patient and carer, of their physical, social, emotional, cultural, religious and spiritual care needs and other relevant life circumstances
  • planning, coordination and delivery of appropriate care based on the needs identified
  • appropriate sharing and communication across all care settings of the needs, and plans identified and actions taken
  • regular review and repetition of the assessment and planning cycle.

Figure 4: Average GP's workload - Average 20 Deaths/ GP/Year (approximate proportions)

Figure 4: Average GP's workload - Average 20 Deaths/GP/Year

Reproduced with permission from the Gold Standards Framework Centre. Prognostic Indicator Guidance Paper. England 2005: September 2008 16

Figure 5: Illness trajectories

Figure 5: Illness trajectories

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. Reproduced with permission from BMJ Publishing Group Ltd and RAND Corporation,Santa Monica, California, USA

15. This Action Plan uses the concepts of assessment and review, planning and delivery of care, and of communication and information sharing as a framework to support a person centred approach to delivering consistent palliative and end of life care in Scotland. The Action Plan also addresses the need to provide equitable and appropriate access to education and training in palliative and end of life care as well as an infrastructure to support the implementation of the Plan. Each section includes background information and guidance in the form of a narrative, action points and indicative timescales for identified individuals and bodies, and examples of current good practice from across Scotland.

16. A series of short-life working groups will be established to produce recommendations in areas highlighted in the recent collaborative process as requiring future development work. A steering group will also be formed to ensure that the Action Plan is implemented in a pragmatic fashion that recognises local variation in the delivery of palliative and end of life care in each NHS Board area, and yet addresses each of the dimensions of quality outlined in Better Health Better Care. Our aim is to ensure that palliative and end of life care in Scotland is of high quality and is continuously improving. Palliative and end of life care will be:

  • patient centred
  • safe
  • effective
  • efficient
  • equitable
  • timely.