Living in the moment for people approaching the end of life: A concept analysis

Dönmez, Çiğdem Fulya; Johnston, Bridget

doi:10.1016/j.ijnurstu.2020.103584

Cited by 14 publications

(14 citation statements)

References 51 publications

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“…The main barriers and enablers to ACP with frail elders were that frail elders rarely saw ACP as relevant to their lives, preferring to focus on living well now, that relationships were important in regard to end-of-life decision-making, and that the concept of ACP was often unclear. These findings are consistent with studies which suggest living in the moment is a coping strategy used by many who are nearing the end of life [ 59 , 60 ], and that future planning is particularly challenging for those living with daily uncertainty [ 61 ], such as frail elders. Similarly, our finding that frail elders often prioritised decision-making within relationships over personal, autonomous decision-making, is consistent with studies looking at autonomy in older people [ 62 – 64 ].…”

Section: Discussionsupporting

confidence: 90%

Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel

Combes

Forbes

Gillett

et al. 2021

BMC Health Serv Res

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Background Advance care planning (ACP) conversations support people to think about, discuss and document their beliefs, values and preferences regarding future care. This process means that should the person loose capacity in the future, care can be provided, consistent with their personal values and beliefs. The ACP process is particularly relevant for older people living with frailty (frail elders) as they are vulnerable to sudden deterioration. However, ACP is rarely undertaken by frail elders. The aim of this study was to develop an intervention to increase multidisciplinary health and social care professionals’ (H&SCPs) engagement of cognitively able, domestic-dwelling frail elders with ACP. Methods Intervention development was guided by the Medical Research Council framework for complex interventions and the Behaviour Change Wheel. Multiple methods were used to understand ACP barriers and enablers: a systematic integrative review, a survey (n = 73 H&SCPs), and semi-structured interviews (n = 10 frail elders, n = 8 family members). A conceptual model, developed from the integrative review, underpinned data collection for the survey and interviews. Synthesis of this data, including patient and public involvement, was then used to identify H&SCPs behaviours that needed to change for ACP to be implemented and decide content and implementation for the intervention. Results Following the Behaviour Change Wheel system, and based on the findings of the review, survey and interviews, the prototype intervention, Conversations on Living and Dying (CLaD), was developed. The CLaD prototype consisted of one 3.5-hour educational skills session for H&SCPs supported by a toolkit. Content focussed on the relevance of ACP for frail elders, experience of ACP by frail elders, and strategies H&SCPs could adopt to encourage frail elders’ engagement with ACP. Strategies include recognising the importance of relationships and living well now, preparing frail elders for ACP conversations and starting ACP early. Participants who took part in initial prototype refinement reported that the intervention helped them think differently about ACP and encouraged them to engage with frail elders. Conclusions The use of behavioural theory enabled the development of CLaD, an evidence-based, theory-driven, person-centred intervention to support ACP engagement with frail elders. While feasibility testing is required, initial prototype refinement demonstrated that H&SCPs found the intervention to be acceptable, engaging, and clinically valuable in their practice with frail elders and their families.

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Section: Discussionsupporting

confidence: 90%

Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel

Combes

Forbes

Gillett

et al. 2021

BMC Health Serv Res

View full text Add to dashboard Cite

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“…While all frail elders were open to advance care planning conversations, they needed to understand advance care planning’s relevance for them, particularly as most were more interested in living well now, a coping strategy suggested as essential for those nearing the end of life. 31 – 33 These findings imply that for advance care planning to be relevant to frail elders it should encompass not just future planning, which can be difficult to imagine when living with uncertainty, 34 but also planning for now and how things may change. This tension between advance care planning the, often medicalised, documentation and advance care planning the process has been highlighted with the recent covid-19 pandemic.…”

Section: Discussionmentioning

confidence: 99%

The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning

et al. 2021

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Background: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. Aim: To explore the barriers and enablers to advance care planning engagement with frail elders. Design: Qualitative in-depth interviews with thematic analysis. Setting/participants: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons’ service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71–95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. Results: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. Conclusions: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts.

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“…This study posits that lung cancer can be perceived as a highly threatening disease that changes one’s self-recognition and starts patients thinking about the meaning of life. Patients experience a sense of uncertainty about the future after diagnosis (Dönmez & Johnston, 2020 ). They fear death, and therefore avoid discussing the disease.…”

Section: Discussionmentioning

confidence: 99%

The meaning of life according to patients with advanced lung cancer: a qualitative study

Zhang

Yang

et al. 2022

International Journal of Qualitative Studies on Health and Well

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Purpose This qualitative study explores the meaning of life and end-of-life coping strategies among patients in China with advanced lung cancer. Methods We conducted in-depth interviews with 21 hospitalized patients with advanced lung cancer and analysed the data using the 7-step Colaizzi method. Results The analysis revealed themes in patients’ experiences and feelings about living with a terminal illness. These include: 1) The core of the meaning of life is “self-iteration,” which includes self-recognition and cherishing life; 2) The existence form of the meaning of life is “yu-wei,” including self-reliance and altruism; 3) The meaning of life is embodied in three levels: the past, present, and future. The past includes gratitude, guilt and remorse, and avoidance; the present includes using the support system, positive response, independence, and integrity; the future includes accompanying relatives, preparing for death, living a high quality of life, and worrying. Conclusion Meaning of life is a multidimensional and diverse concept among patients with advanced lung cancer. Medical care providers and family members can provide targeted professional guidance and psychological support according to patients’ characteristics to help them discover their meaning of life, improve their quality of life, and achieve a positive end-of-life perspective.

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Living in the moment for people approaching the end of life: A concept analysis

Cited by 14 publications

References 51 publications

Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel

Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel

The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning

The meaning of life according to patients with advanced lung cancer: a qualitative study

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