Planning for death but not serious future illness: qualitative study of housebound elderly patients

Abstract

Objective To understand how elderly patients think about and approach future illness and the end of life. Design Qualitative study conducted 1997-9. Setting Physician housecall programme affiliated to US university. Participants 20 chronically ill housebound patients aged over 75 years who could participate in an interview. Participants identified through purposive and random sampling. Main outcome measures In-depth semistructured interviews lasting one to two hours. Results Sixteen people said that they did not think about the future or did not in general plan for the future. Nineteen were particularly reluctant to think about, discuss, or plan for serious future illness. Instead they described a "one day at a time," "what is to be will be" approach to life, preferring to "cross that bridge" when they got to it. Participants considered end of life matters to be in the hands of God, though 13 participants had made wills and 19 had funeral plans. Although some had completed advance directives, these were not well understood and were intended for use only when death was near and certain. Conclusions The elderly people interviewed for this study were resistant to planning in advance for the hypothetical future, particularly for serious illness when death is possible but not certain.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…In another UK study of well older people's views of ACP, Samsi et al 98 found that, rather than engage in anticipatory planning, respondents preferred to confront future difficulties when they arose and to delegate decision-making to others. Similar findings are reported by Carrese et al 94 in a study of chronically ill older patients in the USA. These findings suggest that a substantial number of older people, regardless of their current state of health, may not be receptive to the offer of an ACP discussion.…”

“…Acknowledgement of death and dying is resisted because it threatens to undermine the quality of remaining life lived in the present. 94,98,125 In a study of older UK patients with advanced heart failure, Gott et al 81 found that patients did not want an open awareness of dying, or a precise prognosis. Nor did they value personal autonomy, choice or control over dying, preferring instead to delegate the burden of decision-making to trusted (professional and family) others.…”

“…However, a growing body of qualitative evidence gives an indication of the great complexity, ambivalence and variability of patients' desire to engage in ACP, and their responses to professional invitations to do so. 12,25,67,69,81,88,94,98,122 BACKGROUND NIHR Journals Library www.journalslibrary.nihr.ac.uk…”

Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

“…Previous research has shown that although older people can be resistant to planning in advance for serious illness they do plan for an area of the future that is certain, death (Carrese et al, 2002). This study builds on the work of Carrese et al by showing that the plans made by people with dementia and their family carers are often informal and flexible and most importantly concern areas which make sense to individuals and their family and over which they feel they have control.…”

“…Nonetheless, Gillick (2010) has suggested that the on-going process of ACP should start early, perhaps using videos to aid understanding, and continue with the help of surrogates throughout the course of the condition. Memory clinic staff also appear reluctant to engage during the time of diagnosis (Cavalieri et al, 2002) and unfortunately some patients may be too cognitively impaired when they present (Banerjee et al, 2007). There are other opportunities to introduce ACP along the dementia care pathway, for those who wish to make such plans, including medication review appointments and entry into a care home; the latter, however, may be too late (Robinson et al, 2012).…”