Academic journal article Contemporary Nurse : a Journal for the Australian Nursing Profession

The Turning Point: Identifying End-of-Life Care in Everyday Health Care Practice

Academic journal article Contemporary Nurse : a Journal for the Australian Nursing Profession

The Turning Point: Identifying End-of-Life Care in Everyday Health Care Practice

Article excerpt


End-of-life care is a common and integral part of the care provided by health-care systems. There is, nonetheless, broad consensus among international policy statements that care provided at end-of-life should be different from care provided during other periods of life. Ideally this objective should be realized through implementation of palliative care into all types of care (e.g. Council of Europe, Recommendations 2003: 12; World Health Organisation [WHO], 2002; WHO, 2004).The term end-of-life is difficult since it relies on a poorly defined period before death (Ferrell 2005). There is no exact definition of what end-of-life constitutes, but the US National Institutes of Health (2005: 3) has concluded that evidence supports the following as components of end-of-life:

1. The presence of chronic disease(s) or symptoms or functional impairments which persist but also may fluctuate;

2. The symptoms or impairments resulting from the underlying irreversible disease require formal or informal care and can lead to death.

Older age and frailty may also lead to end of life care. From a clinical point of view this component means recognizing that the individuals who are at the end-of-life are sick to a point where it would not be surprising if they were to die in the near future, even though some of them will live for a long time beyond that recognition.

In the classic study, 'Time for Dying', Glaser and Strauss (1968) conclude that dying takes time, and that the dying course of each individual has at least two outstanding perceived properties: duration and shape. Thus, according to Glaser and Strauss, there are critical junctures, that is turning-points in time, where everyone concludes that the person is actually dying, but still living, and hence should be acknowledged as living at the end-of-life. Except from normative documents declaring that a turning-point idealistically should be emphasized in clinical practice at the end-of-life (e.g. WHO 2002; WHO 2004), empirical studies exploring the phenomenon of a turning-point in end-of-life care are scarce. However, a few empirical studies have implied that such a turning-point is typically late, delayed, or even unexpected, even for individuals for whom the probability of death is high, imparting consequences for the individuals' treatment and adjustment to endof-life care. The transition to care which emphasizes palliation is frequently slow and either interrupted by aggressive acute care or delayed until the last few days of the individual's life (Happ et al. 2002; Somogyi-Zalud et al. 2000; Travis et al. 2001). Consequently, the demarcation becomes unclear between, on the one hand, care directed at cure and rehabilitation and on the other hand, palliative care aimed at relief of suffering (Higginson 2005).

In an earlier study (Jakobsson et al. 2006a), we explored:

1. The incidence of a turning-point to end-of-life care; and

2. The time interval between such a turningpoint and actual death, as determined from health-care records of a representative sample of the population of a county in Sweden, who died during 2001 (n=229).

A turning-point was identified in slightly less than 70% of the records while slightly more than 30% lacked such descriptions. The time interval between the turning-point and actual death ranged between one and 210 days. Thirty percent of these turning-points were documented within the last day of life, 33% during the last 2-7 clays, 19.5% during the last 8-30 days, 13% during the last 31-90 days, and 4.5% during the last 91-210 days of life. For the purpose of the earlier analysis, and the present, it is assumed that a record entry of a turning-point to end-of-life care represents a conclusive statement of which dying is openly communicated among and accessible to both family member(s) and providers involved in the patients' care. Furthermore, these documented words inform care providers of ongoing and planned care and treatment. …

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