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

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.

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

BMC Family Practice ◽

10.1186/s12875-021-01463-3 ◽

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.

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

Palliative Medicine ◽

10.1177/0269216316663507 ◽

2016 ◽

Vol 31 (5) ◽

pp. 394-405 ◽

Cited By ~ 24

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.

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

Nursing Ethics ◽

10.1177/0969733019833130 ◽

2019 ◽

Vol 26 (7-8) ◽

pp. 1946-1954 ◽

Cited By ~ 8

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.

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

British Journal of General Practice ◽

10.3399/bjgp17x694145 ◽

2017 ◽

Vol 68 (666) ◽

pp. e44-e53 ◽

Cited By ~ 13

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.

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Advance care planning for older people

Oxford Textbook of Geriatric Medicine ◽

10.1093/med/9780198701590.003.0160 ◽

2017 ◽

pp. 1235-1240

Author(s):

Aline De Vleminck ◽

Luc Deliens

Keyword(s):

Older People ◽

End Of Life ◽

Advance Care Planning ◽

Care Planning ◽

Life Care ◽

Diagnosis And Prognosis ◽

Advance Care ◽

Cognitive Deficiencies ◽

Care For Older People

It has been suggested that end-of-life care for older people is currently inadequately adapted to their needs. Engaging early in the exploration of their wishes and preferences is of particular importance in this population. Since communication can be difficult for patients at the end of life, especially for those suffering from cognitive deficiencies such as dementia, it is important to become aware of wishes or preferences regarding care in advance and engage in advance care planning (ACP). ACP discussions can play a major role in facilitating adaptation to illness realities by providing patients with information about diagnosis and prognosis, by leading to appropriate decision-making, by alleviating anxiety, and by improving quality of life throughout the trajectory of the illness. ACP initially began as a movement to establish advance directives (ADs), but we have seen a shift to more emphasis being put on the process of communication and interaction.

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

Nursing Ethics ◽

10.1177/0969733018779177 ◽

2018 ◽

Vol 26 (6) ◽

pp. 1696-1706 ◽

Cited By ~ 2

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.

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

Innovation in Aging ◽

10.1093/geroni/igaa057.1528 ◽

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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