The aim of the first part of the chapter is to enable you to understand some of the historical roots of palliative and hospice care, and to reflect on the links between this model of care and the development of nursing. The chapter begins with an overview of the meanings of key terms related to end of life care and a sketch of key epidemiological trends which reveal the extent of need for end of life care worldwide. Dying and ageing are interlinked in the developed world, and this raises many challenges for individuals, society and nursing. To develop understanding of these issues you will be introduced to the concept of the ‘dying trajectory’ as a means of thinking about the heterogeneity of needs that people have as they approach the end of life, and have an opportunity to reflect on some differing definitions of death and the differences between bereavement, grief and mourning.

Clark & Seymour (1999) have described how during the 19th century and in the context of: rising industrialization, urbanization and the beginnings of a growth of hospital medicine directed at the curing and containing disease, there emerged a new social movement directed at the needs of the chronically sick, the aged, the dying and above all the poor. This group of people were somewhat neglected in the newly emergent voluntary hospitals and, as a consequence of the gradual disappearance of traditional models of community and family based care for the dying, found themselves in dire need of support. Homes for the dying, sometimes called ‘hospices’, began to be established during the 19th and early 20th centuries combining a focus on the care of the dying with attention to relieving poverty. Among the most famous is St Joseph’s Hospice in London, which celebrated its centenary in 2005. In most cases, these institutions were founded by religious orders of women, such as the Sisters of Charity, who developed clinical practices in nursing which were to later have a major influence on the founder of the modern hospice movement, Cicely Saunders, and the related development of palliative care nursing. Saunders founded St Christopher’s Hospice in Sydenham, London, in 1967. This was the first modern hospice in the world, which combined care with advanced clinical techniques to control complex symptoms. Saunders developed the notion of ‘total pain’ to capture an approach to care in which the focus is towards the person and their experience of illness: emotionally, spiritually, and socially, rather than just the body and its manifestations of disease (Clark 1999).

‘End of life care’ is a broad term that encompasses more than the phase immediately before death. The term originates from North America, where it has been used particularly in the context of the care of older people and relates to an

End of life care is an appropriate term to capture care given when a person is known to be in the last stages of their life but is not clearly ‘dying’. In the UK, a document published by the NHS Confederation in 2005 gives the following analysis of the groups that will benefit from end of life care:

The World Health Organization (2004) describes palliative care as an approach that improves the quality of life of individuals and their families facing the problems associated with life-threatening illness. This is enabled through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and by addressing other associated physical, psychosocial and spiritual needs. Palliative care thus:

The World Health Organization adopted an explicitly public health orientation to the promotion of palliative care, and was concerned to distance this definition from the close association with cancer that had characterized earlier definitions. It thus promotes a broad vision of palliative care that is relevant to all with chronic illnesses, and their families, with the intention of informing policy decisions about minimum standards for comprehensive palliative care for all in need (Sepúlveda et al 2002).

Within the literature relevant to nursing care provision at the end of life it is possible to identify key elements. Among these are: teamwork; the relief of suffering; the promotion of quality of life and the promotion of dignity (Seymour 2004). Here, we explore these elements to enable you to think critically about the role of nursing and the contribution it can potentially make in end of life care.

In his study of suffering, the physician Eric Cassell argues that suffering is experienced when an impending destruction of the person is perceived and continues until the integrity of the person can be restored in some manner (Cassell 2004). Making sense of suffering and helping the person who is suffering involves understanding what may be a highly personal reaction to illness and distress. For some people, the experience of suffering is linked to a need to find meaning and to search for spiritual or religious explanations for questions that emerge from the experience of suffering: Why me? Why now? Why like this? However, we do not all seek to address such questions; nor is the role of the nurse always to provide a solution to suffering. Arguably, the nurse’s role is to support the person until they reach a resolution in their own terms (Clark & Seymour 1999). Of course, the experience of suffering is not dependent upon or directly linked to the severity of pain or the status of illness. Rather, it is dependent upon the meanings that illness and pain have for the person experiencing them. Kleinman (1988), in his seminal text The Illness Narratives: Suffering, Healing and the Human Condition, notes that: ‘it is possible to talk to patients, even those who are most distressed, about the actual experience of illness, and that witnessing and helping to order that experience can be of therapeutic value’ (Kleinman 1988: xii).

Sometimes it feels difficult to talk or to communicate with people who are suffering, particularly if you do not have years of experience or professional training behind you, but in these circumstances having the courage just to ‘be with’ the person can be experienced by them as deeply supportive.

Visit the first Evolve resource to learn more about the experiences of different people with serious and life limiting illnesses.

If you look back to the WHO definition of palliative care (Sepúlveda et al 2002) you will see that a key goal of palliative care is to enhance quality of life. In their detailed overview of the issues involved in evaluating quality of life, Kaasa & Loge (2004) noted that ‘quality of life’ was cited as one of the main goals of health care in Ancient Greece, which developed a system of health care and associated principles that now underpin the health care system in the modern West. Quality of life is essentially a subjectively defined phenomenon, which is difficult to assess or measure. In spite of this, there have been many attempts to operationalize and quantify ‘quality of life’ in palliative care research (Kaasa & Loge 2004).

Sometimes ‘quality of life’ has been related to the degree to which a person can live a ‘normal’ life or engage with the range of activities of daily living (Kaasa & Loge 2004), or meet the needs identified in Maslow’s needs hierarchy – i.e. biological needs, needs for close relationships, needs for meaningful occupation and the need for change (Maslow 1970). However, these conceptualizations of quality of life do not fit well with the observation that many people living with quite severe illness, with its associated limitations and disabilities, may report a high quality of life. A more useful model is provided by the ‘Gap’ theory of Calman (1984) who argued that quality of life is related to the difference between an individual’s expectations and their perception of any given situation. The wider the gap between expectation and perception, the less quality of life a person may have. It is important to remember that individual perceptions of what is a reasonable quality of life can change quite dramatically with changes in illness status: this is known as the ‘response shift’ phenomenon (Sprangers & Schwartz 1999). In end of life care practice, quality of life assessment is complex and encompasses all aspects of health and social care that people affected by life limiting illness require.

In the second evolve resource for this chapter is a reflective exercise to help you learn more about maximizing the quality of life in palliative and end of life care.

Dignity relates to the respect of individuals and their bodies. Institutional structures and cultures are as critical to the preservation of dignity as individual nurse–patient relationships. De Raeve (1996: 71), suggests that we consider ‘dignity’ in terms of its contribution as a ‘quality’ or an aspect of nursing care given to people who are seriously ill or dying, and whose sense of innate dignity or personal, spiritual and physical integrity may be threatened. It is necessary therefore to consider what treating someone with dignity entails and what care practices maintain or compromise dignity.

In a study with patients and nurses in a hospital, Walsh & Kowanko (2002) show that nurses and patients agree on the key elements of dignity and the sorts of nursing care practices that support or detract from it (see Box 13.1).