Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies

2016 ◽  
Vol 31 (5) ◽  
pp. 394-405 ◽  
Author(s):  
Li-Shan Ke ◽  
Xiaoyan Huang ◽  
Wen-Yu Hu ◽  
Margaret O’Connor ◽  
Susan Lee
Keyword(s):  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Life And Death ◽  
Advance Care ◽  
Different Cultures

Background: Studies have indicated that family members or health professionals may not know or predict their older relatives’ or patients’ health preferences. Although advance care planning is encouraged for older people to prepare end-of-life care, it is still challenging. Aim: To understand the experiences and perspectives of older people regarding advance care planning. Design: A systematic review of qualitative studies and meta-synthesis was conducted. Data sources: CINAHL, MEDLINE, EMBASE, and PsycINFO databases were searched. Results: A total of 50 articles were critically appraised and a thematic synthesis was undertaken. Four themes were identified: life versus death, internal versus external, benefits versus burdens, and controlling versus being controlled. The view of life and death influenced older people’s willingness to discuss their future. The characteristics, experiences, health status, family relationship, and available resources also affected their plans of advance care planning. Older people needed to balance the benefits and burdens of advance care planning, and then judge their own ability to make decisions about end-of-life care. Conclusion: Older people’s perspectives and experiences of advance care planning were varied and often conflicted; cultural differences amplified variances among older people. Truthful information, available resources, and family support are needed to enable older people to maintain dignity at the end of life. The views of life and death for older people from different cultures should be compared to assist health professionals to understand older people’s attitudes toward advance care planning, and thus to develop appropriate strategies to promote advance care planning in different cultures.

The essentials of Advance Care Planning for end-of-life care for older people

2010 ◽  
Vol 19 (3-4) ◽  
pp. 389-397 ◽  
Author(s):  
Sarah Yeun-Sim Jeong ◽  
Isabel Higgins ◽  
Margaret McMillan
Keyword(s):  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Care For Older People

The effectiveness of a modified advance care planning programme

2020 ◽  
Vol 27 (7) ◽  
pp. 1569-1586
Author(s):  
Renli Deng ◽  
Jianghui Zhang ◽  
Liuliu Chen ◽  
Jiarui Miao ◽  
Jiazhong Duan ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Frail Older People ◽  
Advance Care ◽  
Planning Intervention

Background: Frailty is a natural consequence of the aging process. With the increasing aging population in Mainland China, the quality of life and end-of-life care for frail older people need to be taken into consideration. Advance Care Planning has also been used worldwide in long-term facilities, hospitals and communities to improve the quality of end-of-life care, increase patient and family satisfaction, and reduce healthcare costs and hospital admissions in Western countries. However, it has not been practiced in China. Research objective: This study aimed to evaluate the effectiveness of a modified Advance Care Planning intervention in certainty of end-of-life care, preferences for end-of-life care, quality of life concerns, and healthcare utilization among frail older people. Research design: This study used a quasi-experimental design, with a single-blind, control group, pretest and repeated posttest approach. Participants and research context: A convenience sample of 74 participates met the eligibility criteria in each nursing home. A total of 148 frail older people were recruited in two nursing homes in Zhejiang Province, China. Ethical considerations: The study received ethical approval from the Clinical Research Ethics Committee, the Faculty of Medicine, and The Chinese University of Hong Kong, CREC Ref. No: 2016.059. Findings: The results indicated the Advance Care Planning programme was effective at increasing autonomy in decision making on end-of-life care issues, decreasing decision-making conflicts over end-of-life care issues, and increasing their expression about end-of-life care. Discussion: This study promoted the participants’ autonomy and broke through the inherent custom of avoiding talking about death in China. Conclusion: The modified Advance Care Planning intervention is effective and recommended to support the frail older people in their end-of-life care decision in Chinese society.

How is advance care planning conceptualised in Australia? Findings from key informant interviews

2011 ◽  
Vol 35 (2) ◽  
pp. 197 ◽  
Author(s):  
Joel J. Rhee ◽  
Nicholas A. Zwar
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Aged Care ◽  
Treatment Preferences ◽  
Successful Implementation ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Objective. Advance Care Planning (ACP) has been gaining prominence as an important component of good end-of-life care. This study explored how ACP is conceptualised by stakeholder organisations and clinicians involved in aged care and end-of-life care in Australia, in particular their views on the aim, appropriate context and settings for ACP, and how ACP should be facilitated. Participants. Twenty-three participants including expert clinicians and representatives of government organisations, professional societies, consumer groups and other organisations involved in aged care and end-of-life care. Design. Qualitative descriptive analysis of semi-structured telephone interviews. Results. Most participants viewed ACP as an ongoing process aimed at enhancing an individual’s autonomy and ensuring good end-of-life care. However, there were significant differences in how this process was conceptualised. Some viewed ACP as a process undertaken by patients to define and communicate their treatment preferences. Others viewed ACP as discussions undertaken by health professionals to gain a better understanding of the patient’s values and goals in order to provide good care. Implications. Our findings highlight significant differences in how ACP is conceptualised in Australia. A shared conceptualisation and agreement on purpose is needed to ensure a successful implementation of ACP in Australia. What is known about the topic? Advance care planning (ACP) has been gaining increasing prominence both internationally and in Australia and is seen as an important component of good end-of-life care. Originally conceptualised as a document outlining a patient’s specific treatment preferences about life-sustaining treatments, ACP has been increasingly recognised in the literature as an ongoing process of discussion, communication and documentation of the patient’s wishes and values regarding end-of-life care. What does this paper add? This paper shows that most expert clinicians and representatives of key stakeholder organisations view ACP as a process that aims to enhance individual autonomy and ensure good end-of-life care. However, our findings show that they often hold contrasting views on ACP – ranging from a consumer-orientated view that sees ACP as undertaken to define and communicate their care preferences; to a care-orientated view that sees ACP as discussions led by health professionals in order to gain an understanding of patients’ values and wishes in order to provide better care. What are the implications for practitioners? Our findings highlight significant differences in how ACP is conceptualised in Australia. This can cause confusion and conflict, leading to reduced effectiveness of ACP. A shared conceptualisation and agreement on purpose is needed to ensure a successful implementation of ACP in Australia.

scholarly journals Information meetings on end-of-life care for older people by the general practitioner to stimulate advance care planning: a pre-post evaluation study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Annicka G. M. van der Plas ◽  
H. Roeline W. Pasman ◽  
Roosmarijne M. K. Kox ◽  
Marianne Ponstein ◽  
Bea Dame ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Evaluation Study ◽  
Care Planning ◽  
Life Care ◽  
Post Evaluation ◽  
Information Meeting ◽  
Advance Care

Abstract Background To increase knowledge about options people have concerning end-of-life-care issues, General Practitioners (GPs) can organise meetings to inform their older patients. We evaluated these meetings, using the following research questions: How did the attendees experience the information meeting? Was there a rise in Advance Care Planning (ACP) behaviour after the information meeting? Was there a change in trust people have that physicians will provide good care at the end of life and that they will follow their end-of-life wishes after the information meetings? Methods Four GPs invited all patients of 75 years and older registered in their GP practices to the meeting via a written letter. Four meetings of 2 h took place in 2016. Meetings started with a presentation on end-of-life topics and ACP by the GP followed by time for questions. A pre-post evaluation study was done using written questionnaires distributed and filled in at the start of the meeting (T0) at the end of the meeting (T1) and 6 months after the meeting (T2). Results In total 225 older people attended a meeting of which 154 (68%) filled in the questionnaire at T0 and 145 (64%) filled in the questionnaire at T1. After six months, 90 of the 121 people who approved of being sent another questionnaire at T2, returned it (40%). The average age of the respondents was 80 years (T0). The meetings were evaluated positively by the attendees (T1). ACP issues (appointing a proxy, resuscitation, hospitalisation, euthanasia, treatment preferences under certain circumstances, preferred place of care and nursing home admittance) were discussed with a physician, a relative or both more often in the 6 months after having attended the meeting (T2), compared to before (T0). Compared to before the meeting (T0), trust in the GP providing good end-of-life care and following end-of-life wishes was higher immediately after the meeting (T1), but not after 6 months (T2). Conclusion Information meetings on end-of-life care by GPs have a positive influence on the occurrence of ACP, both with the physician and others. Although, this method especially reaches the older people that are already interested in the subject, this seems a relatively easy way to stimulate ACP.

Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy

2019 ◽  
Vol 26 (7-8) ◽  
pp. 1946-1954 ◽  
Author(s):  
Kay de Vries ◽  
Elizabeth Banister ◽  
Karen Harrison Dening ◽  
Bertha Ochieng
Keyword(s):  
Health Literacy ◽  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Moral Agency ◽  
Care Planning ◽  
Life Care ◽  
Spirituality And Health ◽  
Advance Care

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples’ ability to enact moral agency in making such decisions.

scholarly journals GPs’ perceptions of advance care planning with frail and older people: a qualitative study

2017 ◽  
Vol 68 (666) ◽  
pp. e44-e53 ◽  
Author(s):  
Tim Sharp ◽  
Alexandra Malyon ◽  
Stephen Barclay
Keyword(s):  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Social Care ◽  
Care Planning ◽  
Life Care ◽  
Care Providers ◽  
Health And Social Care ◽  
Advance Care

BackgroundFrail and older people are estimated to account for 40% of deaths. Despite conversations about end-of-life care being an important component of the national End of Life Care Strategy, there is a marked disparity between the majority who would like to discuss advance care plans, and the minority who currently have this opportunity.AimTo investigate the attitudes of GPs to advance care planning (ACP) discussions with frail and older individuals.Design and settingFocus group study with GPs in Cambridgeshire between September 2015 and January 2016.MethodFive focus groups with 21 GPs were purposively sampled to maximise diversity. Framework analysis was used to analyse transcripts and develop themes.ResultsAlthough some GPs were concerned it might cause distress, the majority felt that raising ACP was important, especially as preparation for future emergencies. Knowing the individuals, introducing the idea as part of ongoing discussions, and public awareness campaigns were all facilitators identified. Several considered that service limitations made it difficult to fulfil patients’ wishes and risked raising unrealistic patient expectations. Other barriers identified included uncertainty over prognosis and difficulties ensuring that individuals’ wishes were respected.ConclusionMost GPs viewed ACP as important. However, their enthusiasm was tempered by experience. This study highlights the difficulties for GPs of encouraging dialogue and respecting individuals’ wishes within the constraints of the existing health and social care system. National publicity campaigns and encouraging patients to prioritise healthcare outcomes could help GPs raise care preferences without causing a detrimental impact on patients or raising unrealistic expectations. Once patients agree their care preferences, they need to be documented, accessible, and reviewed by all relevant health and social care providers to ensure that their wishes are respected, and plans amended as their circumstances change.

Uptake and implementation of Advance Care Planning in Australia: findings of key informant interviews

2012 ◽  
Vol 36 (1) ◽  
pp. 98 ◽  
Author(s):  
Joel J. Rhee ◽  
Nicholas A. Zwar ◽  
Lynn A. Kemp
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Care Plans ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues

Objective. Advance Care Planning (ACP) has an important role in enhancing patient autonomy and guiding end-of-life care. However, there is low uptake of ACP and evidence that advance care plans are often not implemented. We explored these issues in interviews with expert clinicians and representatives of key stakeholder organisations with interest in end-of-life care. Method. Qualitative descriptive study of semi-structured telephone interviews with 23 participants. Results. Participants thought that the low uptake of ACP in Australia is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans were thought to be a result of problems in accessing ACP documents; interpreting written documents; making binding decisions for future unpredictable situations; and paternalistic attitudes of health professionals and families. Participants had different perspectives on how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. Implications. Low uptake and poor implementation of advance care plans may be addressed by (1) increasing community awareness; (2) encouraging health professional involvement; and (3) system-wide implementation of multi-faceted interventions. A patient-centred approach to ACP is required to resolve the differences in views on how advance care plans should be implemented. What is known about the topic? Advance Care Planning (ACP) has been gaining prominence in Australia for its role in enhancing a patient’s autonomy and as an important component of good end-of-life care. Evidence from overseas and a limited number of Australian studies have identified several problems with ACP. First, the uptake of ACP seems to be low. Second, even when ACP process takes place, the resultant plans are often not implemented and make little effect on delivery of end-of-life care. What does this paper add? This paper confirms that the uptake of ACP is limited in Australia and is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans may be because of problems in: accessing ACP documents, interpreting written documents, making binding decisions for future unpredictable situations, and paternalistic attitudes of health professionals and families. This paper also shows that there are different perspectives in how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. What are the implications for practitioners? This paper outlines several ways in which problems in the uptake and implementation of advance care plans may be addressed. This involves (1) increasing community awareness; (2) encouraging health professional involvement in ACP; and (3) system-wide implementation of multi-faceted interventions in ACP. Our findings also suggest that there needs to be a shift from a one-size-fits-all approach to implementing advance care plans to a more flexible patient-centred approach. This approach could ensure that a patient’s autonomy and right to self-determination are adequately protected, while also catering to the needs of those requiring more flexible approaches to end-of-life decision-making.

Advance care planning for frail older people in China: A discussion paper

2018 ◽  
Vol 26 (6) ◽  
pp. 1696-1706 ◽  
Author(s):  
Ren-Li Deng ◽  
Jia-Zhong Duan ◽  
Jiang-Hui Zhang ◽  
Jia-Rui Miao ◽  
Liu-Liu Chen ◽  
...  
Keyword(s):  
Nursing Homes ◽  
Older People ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Mainland China ◽  
Care Planning ◽  
Life Care ◽  
Frail Older People ◽  
Advance Care

As the aging population, including frail older people, continues to grow in Mainland China, quality of life and end-of-life care for frail older people has attracted much attention. Advance care planning is an effective way to improve end-of-life care for people with advanced diseases, and it is widely used in developed countries; however, it is a new concept in Mainland China. The effects of advance care planning and its acceptability in Mainland China are uncertain because of its culture-sensitive characteristics. The objective of this article is to discuss the serious social issue of caring for frail older people and illustrate the possibility of implementing advance care planning in nursing homes in Mainland China through a review of relevant literature, which will focus on legislation, healthcare system engagement, public engagement, and cultural issues. Recommendations to promote and implement advance care planning include choosing nursing homes as a proper setting, establishing an ethical climate, and enhancing public awareness.

scholarly journals 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

2015 ◽  
Vol 3 (31) ◽  
pp. 1-138 ◽  
Author(s):  
Kristian Pollock ◽  
Eleanor Wilson
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Community Care ◽  
Death And Dying ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

BackgroundAdvance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic.AimTo investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life.Design and data collectionQualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total.SettingGeneral practices and community care settings in the East Midlands of England.FindingsThe study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare.ConclusionsAdvance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity.Future workAttention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals Unraveling the Effects of Social Class and Systemic Racism on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Black Americans ◽  
Low Ses ◽  
Care Planning ◽  
Life Care ◽  
Black And White ◽  
Advance Care ◽  
Using Data

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.

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