An exploration of the influences older people's views about end-of-life decisions and the factors influencing such decision making, advanced care planning and open discussions about death.

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An exploration of  the  influences older people’s views about end-of-life

decisions and the factors influencing such decision making,  

advanced care planning and open discussions about death


In  exploration of  the  influences older people’s views about end-of-life decisions and the factors influencing such decision making,  advanced care planning and open discussions about death; many things must be taken account of. This literature review aims to provide an introductory review to the area and draw some preliminary conclusions about not only the research completed, but further research which is essential to gain a comprehensive understanding of the area.

Views of  the older generation

One of the fields in which the advances of medical technology has had the greatest impact is in that of end-of-life care. One can now have an input  into the manner, timing and place of dying  in accordance with the dying persons wishes. However, in spite of public demands for more openness around these issues (i.e. Kirkwood, 2001) and the publications of guidelines suggesting that it is good practice to involve dying people and their family caregivers in care decisions (BMA, 2001; GMC 2001), there is comparatively little known about end-of-life preferences, nor do we completely understand the complexities and risks that are perceived to surround the doctor-patient or doctor-family relationship during end-of-life decision making. Since death in the developed world is to be expected to occur at the end of a long life, it is important to be aware of the views and values which older people assert in relation to these issues.

The principle of the advanced care statement, introduced in the last twenty five years in the USA  and the last decade in the UK, perhaps encapsulates most clearly the search for ways of preserving the influence of the individual beyond the point at which the ability to exercise informed consent is lost to hastening disease and disability, (Mitchell 2003). However, there is little empirical research in the UK that explores the extent to which advanced statements are perceived by the public to be useful for protecting individual autonomy, what issues are perceived to be associated with the process of their development and with their use in end-of-life care. Moreover, it is not established whether their emphasis on self determination and autonomy resolves with lay understandings of how dying people should be cared for by their families and clinicians in the UK.

Seymour et al (2003) used focus group participants to explore how making an advanced care statement could help them avoid the indignity of prolonged dying and protect their interests as older, and potentially marginalised people. Most notably, and in contrary to UK guidelines on the withdrawal and withholding of life prolonging treatment (BMA, 2001; GMC, 2001), Participants saw a clear role for family ‘veto’ of what remains in a legal sense, primarily medically determined end-of-life care decisions. In this context, the benefits of advanced statements were seen primarily in terms of the potential they have for providing a guide for family members, especially  where a person may only have one or two surviving relatives, or in terms of ensuring that their burden of decision making was lessened. The study participants did not have an appreciation for the premise of the one to one relationship between clinician and patient that much of the bioethics literature assumes (Kater, Houtpen & de Vries, 2003; Lothian & Philp, 2001; Lugton, 1987), but rather recognise a profound interdependency between dying people and their families in which the role of the latter is one of representation and of medication between clinician and dying patient. Their morel concern thus ranged between the narrow concern which autonomy predicts and total disregard,(Beauchamp and Childress, 2001).

Similar findings were found by Singer et al (1998), in a study of the views of 48 renal dialysis patients in Canada who had been given the opportunity to complete an advanced care statement. Although control was often cited as an important goal for ACP, many participants also sought to mitigate the burdens placed on others of either being forced to provide care or watching an unnecessary prolonged process of dying. Some patients said “explicitly that their main goal in ACP was to relieve a loved one of the burden of substitute decision making” (Singer et al, 1998). In commenting on these findings, Singer et al argue that ‘the philosophical basis of ACP be reconsidered and possibly broadened to account for the value of personal relationships.   Issues about the role of the family in end-of-life decisions are similarly highlighted in a study of older Chinese people’s perspectives on end-of-life decisions, (Bowman and Singer 2001). Here the individual is considered to be part of the family, and the individual’s choices ‘are not theirs alone but belong to the family’ (Bowman and Singer, 2001, p.461).

Cultural and Religious Issues

The article by Bowman and Singer highlights the notion that although making end-of-life decisions is a painful and difficult process, it is one that can be intensified by cultural differences between Doctors and their patients.  Attitudes about end-of-life decision making may reflect the cultural values of a society. Cultures are maps of meanings through which people understand the world and interpret the things around them. When patients and health care workers have different cultural backgrounds, they frequently follow different ‘maps’ which can hinder effective communication. Chinese attitudes to end-of-life decision making for example can be understood through the lens of values from Confucianism Taoist, Buddhist and traditions, and trace the implications for practice, (Bowman and Singer).

Ageing and dying

The gerentologist Victor Marshall has remarked that the social sciences have contributed little to our understanding of ageing and dying, (Seymour 1999) It is the conjunction of the two subjects which is important here, for undoubtedly there is a large social scientific literature  both on aspects of ageing and of matters of death and dying, (Dickenson & Johnson 1993). Gerontology however has placed such a strong emphasis on positive images of the ageing process, on opposing ageism and upon questions of advocacy for older people, that it seemed incapable at times of acknowledging that the aged also die. REF suggest that three factors have influenced public discussion of old age in recent decades. Firstly there has been considerable growth of interest in issues of ageing which has been fuelled in particular by debates about pensions. Second there is the impact of community care polices upon services for older people.  Third, increases in the phenomenon of ‘early retirement’ have created interest in notions of the ‘third age’ and later life as a period of extensive opportunities.

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Open discussions about death

Literature suggests that the discussion of end-of-life care issues is extremely difficult. Manistry (2003) reports that patients increasingly want to participate in decisions regarding their medical treatment, however, discussion about life prolonging medical technologies forces the patient to confront the inevitability of their fate.  One argument for not discussing medical technologies with elderly people revolves around medical futility (Laake, 2003). This term is applied to justify withholding treatment in patients who are likely to gain minimal benefit. For example, the continued resuscitation of an elderly patient with terminal cancer may constitute such a situation, ...

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