Stephanie B Johnson1, Phyllis N Butow2, Ian Kerridge3, Martin Hn Tattersall4. 1. Research associate and PhD candidate, the Centre for Medical Psychology and Evidence-based Decision-making, University of Sydney, NSW, Australia. 2. Principal research fellow, National Health and Medical Research Council, Australia; Director, the Centre for Medical Psychology and Evidence-based Decision-making, University of Sydney, NSW, Australia. 3. Professor of Bioethics and Medicine, Sydney Health Ethics, University of Sydney, Sydney, NSW, Australia. 4. Professor of Cancer Medicine, the Centre for Medical Psychology and Evidence-based Decision-making, University of Sydney, NSW, Australia.
Abstract
BACKGROUND: Advance care planning (ACP) is defined in a variety of ways, although it is widely understood as a process undertaken by patients, when they have capacity, to define and communicate their treatment preferences for future care. Few studies have explored the meaning and importance patients place on their ability to participate in directing their medical care. AIM: This study aimed to explore how cancer patients and their family members value autonomy at the end of life (EoL) and understand how this may impact on the way they develop and act on EoL decisions and planning. METHODS: Data were collected through in-depth semi-structured interviews with patients and family members of people with cancer. Participants were recruited from metropolitan cancer centres in Sydney, Australia. Interviews were analysed using thematic analysis. FINDINGS: Findings from 11 participant interviews (five patients with cancer and six family members) were organised into four themes: 'the threat of death and cancer'; 'patients seek trust and safety at the end of life'; 'doctors are human and the healthcare system has limitations'; and 'the role of ACP'. Participants experienced cancer and death as a 'threat', to self and others and as something 'uncontrollable'. ACP was seen to have the potential to enhance EoL care by contributing to decreasing uncertainty, enhancing comfort, helping to achieve 'the small things', and in helping the family 'know what to do'. However, participants were, in general, distrustful of documentation and cognisant of uncertainty around medical outcomes and the legal limitations of their capacity to influence care. CONCLUSIONS: These findings suggest that models of ACP which are constructed around patients' 'rights' to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust and comfort at the EoL more than autonomy. Quality EoL care should focus on paying increased attention to the relational and social aspects of care.
BACKGROUND: Advance care planning (ACP) is defined in a variety of ways, although it is widely understood as a process undertaken by patients, when they have capacity, to define and communicate their treatment preferences for future care. Few studies have explored the meaning and importance patients place on their ability to participate in directing their medical care. AIM: This study aimed to explore how cancerpatients and their family members value autonomy at the end of life (EoL) and understand how this may impact on the way they develop and act on EoL decisions and planning. METHODS: Data were collected through in-depth semi-structured interviews with patients and family members of people with cancer. Participants were recruited from metropolitan cancer centres in Sydney, Australia. Interviews were analysed using thematic analysis. FINDINGS: Findings from 11 participant interviews (five patients with cancer and six family members) were organised into four themes: 'the threat of death and cancer'; 'patients seek trust and safety at the end of life'; 'doctors are human and the healthcare system has limitations'; and 'the role of ACP'. Participants experienced cancer and death as a 'threat', to self and others and as something 'uncontrollable'. ACP was seen to have the potential to enhance EoL care by contributing to decreasing uncertainty, enhancing comfort, helping to achieve 'the small things', and in helping the family 'know what to do'. However, participants were, in general, distrustful of documentation and cognisant of uncertainty around medical outcomes and the legal limitations of their capacity to influence care. CONCLUSIONS: These findings suggest that models of ACP which are constructed around patients' 'rights' to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust and comfort at the EoL more than autonomy. Quality EoL care should focus on paying increased attention to the relational and social aspects of care.
Entities:
Keywords:
Advance care planning; Autonomy; Bioethics; End of life; Qualitative research
Authors: Rajiv Agarwal; Elyse Shuk; Danielle Romano; Margaux Genoff; Yuelin Li; Eileen M O'Reilly; William Breitbart; Angelo E Volandes; Andrew S Epstein Journal: Support Care Cancer Date: 2019-06-13 Impact factor: 3.603
Authors: Kathleen A Lynch; Camila Bernal; Danielle R Romano; Paul Shin; Judith E Nelson; Molly Okpako; Kelley Anderson; Elizabeth Cruz; Anjali V Desai; Virginia M Klimek; Andrew S Epstein Journal: BMC Palliat Care Date: 2022-03-06 Impact factor: 3.234