Experiences and perspectives of older adults in nursing homes and their families participating in advance care planning: a meta-synthesis of qualitative studies

Abstract

Background

Against the backdrop of an increasingly aging global population, improving the quality of life and end-of-life care for older adults has become a critical public health concern. Advance care planning(ACP) offers potential benefits, including enhancing the quality of end-of-life care, reducing unnecessary medical interventions, and alleviating the burden on family members. However, in the unique context of nursing homes, the willingness and actual participation of residents and their families in ACP are influenced by various factors.

Aim

This systematic review and meta-synthesis aims to comprehensively explore the experiences, perceptions, challenges, and facilitators related to ACP participation among older adults and their families in nursing homes, in order to provide an evidence base for developing more effective ACP implementation strategies.

Methods

A qualitative meta-synthesis was conducted to systematically review and synthesize existing qualitative studies, guided by the ENTREQ statement and PRISMA guidelines. A systematic search was conducted across PubMed, Web of Science, Embase, EBSCO, The Cochrane Library, Sinomed, CNKI, and WanFang databases (from inception to October 2024) identified qualitative studies pertaining to the experiences and perspectives of nursing home residents and their families regarding ACP. The search was based on three key concepts: advance care planning, nursing homes, and qualitative research. Eligibility criteria included (1) participants being nursing home residents or their family members discussing ACP experiences; (2) studies published in English or Chinese; and (3) qualitative or mixed-method studies (qualitative data only extracted from mixed-methods). The methodological quality of the included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. The data was synthesized using thematic synthesis method.

Results

A total of 1,097 articles were retrieved through database searches, and 21 studies met the inclusion criteria. Three overarching themes were identified: (1) Attitudes of older adults and their families towards ACP; (2) Individualized needs for ACP; and (3) Factors affecting the implementation of ACP. Most older adults and their families perceived ACP as a facilitator of emotional expression and communication and acknowledged its educational value. However, some family members expressed avoidance, ambivalence, or uncertainty toward ACP. Moreover, ACP was found to be highly individualized, with varying needs among participants. Key facilitators of ACP in nursing homes included the provision of clear and concise information, adequate cognitive functioning among residents, supportive policies, an open cultural environment, a compassionate multidisciplinary team, and strong trusting relationships.

Conclusion

An increasing number of older adults and their families in nursing homes have recognized the value of ACP in facilitating communication and expressing care preferences. However, implementing ACP in these settings remains challenging due to cultural sensitivities around death and broader sociocultural influences. To improve ACP uptake in nursing homes, relevant authorities should strengthen legal frameworks and refine policy measures to enhance standardization and support the active participation of older adults. Tailored decision-support tools and materials should be developed to meet the diverse needs of nursing home populations. Additionally, the healthcare system should provide compassion-focused training to enhance staff empathy and promote interdisciplinary collaboration.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-025-01886-0.

Introduction

With advances in medical technology and improvements in living standards, life expectancy has generally increased, and global population aging has become a pressing public health concern. According to the United Nations Department of Economic and Social Affairs, global fertility rates have declined, contributing to a marked increase in population aging [1]. In 2021, the number of people aged 65 years and older reached 761 million and is projected to rise to 1.6 billion by 2050 [1]. By the late 2070 s, the population aged over 65 is expected to surpass that of individuals under the age of 18 [2]. In many countries, declining fertility rates and the emergence of non-traditional family structures have weakened familial support systems for older adults [3]. In China, the implementation of the one-child policy in the late 1970 s and early 1980 s further contributed to the shrinking of traditional family caregiving capacity [4]. As the number of one-child and childless families continues to increase, the role of family-based eldercare has diminished, prompting a growing number of older adults to turn to institutional care [5]. Older adults residing in long-term care facilities often have compromised health conditions, including cognitive impairments such as dementia [6, 7], and many experience significant difficulties with activities of daily living [8]. They are frequently at risk of losing decision-making capacity [9], and institutions have increasingly become the place where many older adults spend the final stages of life [10, 11]. Against this backdrop, growing attention is being paid to the concepts of a “good life” and a “good death” with person-centered end-of-life care emerging as a key element of the latter [12].

Advance care planning (ACP) has attracted increasing attention as an important approach to honoring patients’ wishes for a “good death” and is recognized as a key component of health behavior change interventions [13]. ACP refers to a structured process through which a competent individual communicates with healthcare providers and family members to express treatment preferences, formulate an end-of-life care plan in advance, and complete an advance healthcare directive [14]. Initially, ACP was associated with palliative care, and some studies have shown that ACP can be discussed at any stage of life, and it is best to begin early in the chronic disease process [15]. Given the complex health profiles of older adults in nursing homes, ACP should be initiated as early as possible to avoid the loss of autonomy resulting from age-related declines in cognitive and communicative capacity. Numerous randomized controlled trials have demonstrated that [9, 16, 17] ACP implementation in long-term care facilities can significantly reduce the emotional burden on families, lower hospitalization and in-hospital mortality rates, and consequently decrease overall healthcare expenditures. Moreover, ACP enables older adults to maintain autonomy by making informed decisions aligned with their personal values and by achieving the kind of end-of-life experience they desire.

Currently, ACP is rapidly developing in developed regions such as Europe and the United States [18, 19], where relatively mature systems and standardized processes have been established across various care settings. However, in some other regions, despite growing recognition of ACP’s benefits, its development and implementation remain underdeveloped [20]. For example, in many Asian countries, where family-centered decision-making models prevail [21], the autonomy of older adults in care-related decisions is often overlooked. Several studies indicate that older adults tend to adopt a passive role in decisions concerning their own care [22]. Although family members of nursing home residents may not be directly involved in primary caregiving, they continue to play a vital role in the ACP process within family-oriented cultural contexts, frequently serving as surrogate decision-makers [23, 24]. This involvement is particularly critical for older adults with dementia residing in nursing facilities, whose cognitive impairments restrict their decision-making capacity [25].

Several systematic reviews have examined ACP among older adults and family members. Mignani et al. synthesized evidence on ACP perspectives of nursing home residents and families, Liang et al. explored ACP perceptions among older people in nursing facilities, and Tang et al. focused on older adults’ views of ACP more broadly [26–28]. However, these previous reviews commonly excluded studies involving older adults with cognitive impairment, despite the fact that cognitive decline is prevalent in nursing home populations [27, 28]. Consequently, the perspectives of individuals with impaired decisionmaking capacity and the role of their families as surrogate decisionmakers have been relatively underexplored. To address this gap, the present review systematically retrieves and synthesizes qualitative research exploring the perceptions, participation, and experiences of ACP from the perspectives of both nursing home residents and their family members. By integrating these perspectives, including those from studies involving residents with cognitive impairments, this review provides updated, context specific evidence to inform ACP practices in nursing homes.

Methods

The preparation of this article was guided by the Enhancing Transparency in Reporting Qualitative Research Synthesis (ENTREQ) statement (see Appendix 2) [29] and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (see Appendix 3) [30]. The methodological quality of the included studies was evaluated using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research [31]. The protocol for this systematic review was prospectively registered on PROSPERO (CRD42024626800) and is publicly accessible at crd.york.ac.uk/PROSPERO/display_record.php? RecordID = 626,800.

Search strategy

A systematic search was conducted across eight databases, including PubMed, Web of Science, Embase, EBSCO, The Cochrane Library, Sinomed, CNKI and WanFang. MeSH terms were searched through PubMed, the retrieval method of combining MeSH terms and free text keywords was adopted. Additional relevant studies were identified by screening the reference lists of included articles. Search terms included old-age care institution*, homes for the aged, old folk’s home*, homes for the elderly, retirement home*, nursing home resident*, rest home*, nursing home*, institutional*, advance care planning, advance medical planning, advance care plan*, ACP, advance directive*, qualitative research, qualitative study, narrative, mixed method*, phenomenon*, ethnograph*, hermeneutics, grounded theory. The retrieval period spanned from the inception of each database to October 2024. The full search strategy for PubMed is provided in Appendix 1.

Eligibility criteria

Inclusion criteria

(1) Participants were older adults residing in nursing homes or their family members who expressed views or experiences regarding participation in ACP within the facility; (2) Studies published in English or Chinese; (3) Studies employing qualitative or mixed-method designs, with only qualitative data included from mixed-method studies. If a study explored experiences or views from multiple participant groups, only data pertaining to older adults and their families were analyzed.

Exclusion criteria

(1) Studies focusing solely on describing the characteristics of ACP in nursing homes; (2) Studies centered on the development of ACP management strategies; (3) Studies evaluating ACP intervention programs; (4) Studies for which the full text was unavailable.

Data screening and extraction

Screening and study selection were conducted following the PRISMA guidelines, as illustrated in Fig. 1. After importing all articles into EndNote 21 and removing duplicates, two researchers (YP-L and FL) independently screened the titles, abstracts, and full texts to exclude studies that did not meet the inclusion criteria. Discrepancies were resolved through discussion, and if consensus was not reached, a third researcher was consulted to make the final decision. Eligible data were then extracted into a Microsoft Excel spreadsheet. As detailed in Table 1, data extraction was guided by the Joanna Briggs Institute (JBI) standardized form [31], tailored to the reviews’ themes and synthesis method. Extracted information included authors, country, study design, participants, sample size, study objectives, and key findings. Data extraction was performed independently by the two researchers (YP-L and FL), and the results were reviewed and confirmed by the entire study team to ensure accuracy and consistency.

Fig. 1.

PRISMA flow chart of the study screening process

Table 1.

Summary of included studies

Study	Country	Year	Design	Participants	Aims	Themes/Results
Andrews et al.[32]	United Kingdom	2023	Ethnography	2 Nursing homes: 6 older adults; 4 family members; 7 health care professionals; 19 nursing home staff;	To explore the engagement of multidisciplinary teams in advance care planning (ACP) within long-term care facilities and to understand the perceptions of older adults and their family members toward ACP.	Two themes: (1) continuity of relationships and information sharing to facilitate plan implementation; (2) coordination of multi-disciplinary teams and family involvement is key
Ingravallo et al.[33]	Italy	2018	Phenomenological method	30 older adults; 10 family members	To explore the attitudes and perceptions of older adults and their family members in nursing homes regarding ACP.	Two themes: (1) future plans and attitudes towards ACP; (2) the content and manner of ACP
Bollig et al.[34]	Norway	2015	Phenomenological method	9 Nursing homes: 25 older adults; 18 family members	To explore the perspectives of cognitively intact institutionalized older adults and their relatives on ACP, end-of-life care, and the decision-making process.	There themes: (1) barriers to ACP; (2) desire for end-of-life care; (3) views on decision making
Fan et al.[35]	Taiwan, China	2019	Phenomenological method	28 older adults	To explore the experiences and processes of older adults participating in ACP in residential care facilities and the factors influencing their decision-making.	There themes: (1) the way to “a good death”; (2) uncertainty in decision making; (3) the role of the family in ACP decision-making
Lee et al.[36]	Taiwan, China	2022	Descriptive study	10 older adults;12 family members	To explore the questions that older adults and their family members find difficult to ask when making end-of-life decisions and their views and attitudes toward ACP in nursing homes.	Six themes: (1) the inevitable farewell; (2) a good death; (3) follow or go against traditional culture; (4) better die than live; (5) defer to older adults’ decisions; (6) willing but unable to care for older people
Kastbom et al.[37]	Sweden	2020	Phenomenological method	18 family members of deceased residents	To explore the family's experience of ACP in a nursing home and their feelings and perceptions of communication between older adults and caregivers about end-of-life issues.	Five themes: (1) it is difficult to talk about end-of-life problems; (2) he tacit understanding between family members and older adults; (3) the importance of small details; (4) invisible doctors, supportive nurses; (5) the family's guilt
Rainsford et al.[38]	Australia	2021	Descriptive study	2 Nursing homes:4 Family members;6 health care professionals;4 nursing home staff	To explore the experiences of families, staff, and healthcare professionals on advance care planning for multidisciplinary case conferences.	Four themes: (1) how the project works; (2) overcoming implementation difficulties; (3) the impact multidisciplinary case conference on ACP; (4) think beyond the project
Zhou et al.[39]	China	2024	Phenomenological method	4 Nursing homes:12 older adults;10 family members;14 health care professionals	To explore the views and preferences of older adults, their family members and medical staff regarding ACP in China	Four themes: (1) lack of discussion about end-of-life care; (2) relational decision-making process is a double factor affecting ACP participation; (3) a culture of "low trust" and insecurity; (4) meeting and respecting the psychosocial needs of older adults
Carter et al.[40]	United Kingdom	2018	Descriptive study	20 families of residents with dementia	To understand the decision-making experiences of family members in a nursing home setting, and the challenges and support needs they face.	There themes: (1) the impact of caring for older adults with dementia on the overall well-being of the family members; (2) gaining support: online influence; (3) awareness and understanding of dementia trajectories by family members and caregivers
Cousins et al.[41]	United Kingdom	2023	Case study	8 Nursing homes:19 family members;35 health care professionals	To explore the family and nursing staff's feedback on the barriers and facilitators of ACP implementation, about the intervention content and information.	Four themes: (1) training and information needs; (2) training and access to information; (3) training and information background; (4) encourage dialogue
Stewart et al.[42]	United Kingdom	2011	Phenomenological method	14 older adults;15 family members;34 health care professionals	To explore the views of the older adults, family members and nursing staff on ACP in nursing homes and the influencing factors for implementation.	Two themes: (1) the benefits of ACP; (2) barriers to ACP
Rosemond et al.[43]	United States	2017	Phenomenological method	16 families of residents with dementia	To explore the experiences of family members of the older adults with advanced dementia in nursing homes participating in ACP.	Two themes: (1) trust brings positive end-of-life experience; (2) no effect of trust on end-of-life experience discussions
Lee et al.[44]	Taiwan, China	2024	Descriptive study	18 older adults;20 family members	To explore the barriers that older adults and their families face in initiating ACP discussions in elderly institutionalized care facilities in Taiwan.	Five themes: (1) cultural or spiritual concerns; (2) prioritize families; (3) waiting for the right time; (4) feeling uncertain; (5) follow in the footsteps of older adults
Sussman et al.[45]	Canada	2022	Phenomenological method	4 Nursing homes:35 older adults;16 family members	To explore the views of the older adults and their families on ACP in nursing homes and the barriers to improving ACP participation.	There themes: (1) the relationship with ACP staff is more important than staff level; (2) limited time and opportunities to engage meaningfully with all facility employees; (3) providing a compassionate environment for the living and dying
Stone et al.[46]	United Kingdom	2013	Descriptive study	11 older adults;6 family members;6 nursing home staff	To describe the experiences of older adults, families, and agency staff in initiating and completing ACP in a nursing home setting.	There themes: (1) understand ACP; (2) conducting ACP discussions; (3) effects and responses discussed in ACP
Lambert et al.[47]	Canada	2005	Grounded theory	9 older adults	To describe the decision-making process of older adults in nursing homes when making AD and the factors affecting this process.	Two themes: (1) sources of ACP information; (2) influencing mental, emotional, and social considerations in the decision-making process
Sævareid et al.[48]	Norway	2019	Phenomenological method	4 Nursing homes:11 Residents with cognitive impairment;6 family members;6 health care professionals	To explore the importance of ACP implementation in nursing homes, and the views and experiences of the older adults, family members, medical professionals, and managers on ACP.	Two themes: (1) valuable experience of ACP; (2) the Importance of ACP
Jeong et al.[49]	Australia	2011	Case study	3 older adults;11 Family members	To explore the experiences, feelings, attitudes, challenges and supportive factors of older adults and their families participating in ACP in nursing homes.	There themes: (1) early unpleasantness; (2) solving problems and changing attitudes; (3) factors that enhance or inhibit the transition
Klemmt et al.[50]	Canada	2020	Descriptive study	7 Nursing homes:24 older adults;8 family members	To describe the wishes and needs of the older adults and their families for medical care planning in nursing homes, the existing communication processes and how the communication is recorded were explored.	Eight themes: (1) end of life related wishes and needs; (2) building a communication structure based on wishes and needs; (3) keep track of wants and needs; (4) decision-making orientation anddecision-making behavior; (5) an understanding of autonomy and dignity at the end of life; (6) the desire to accompany older adults; (7) level of knowledge and formalism; (8) communication and Interaction
Thoresen et al.[24]	Norway	2016	Descriptive study	8 Nursing homes;7 older adults;10 family members	To describe the experiences and experiences of older adults and their families in nursing homes participating in ACP.	There themes: (1) older adults and their families are seen as an intertwined unit; (2) family participation in ACP dialogue is very important for in-depth understanding of the patient; (3) families share end-of-life and death experiences
Gjerberg et al.[51]	Norway	2015	Phenomenological method	6 Nursing homes:35 older adults;33 family members	o explore the experiences and perspectives of the older adults in nursing homes and their families on ACP.	There themes: (1) lack of hospice communication; (2) a desire to be told; (3) shared decision making

PS: All studies conducted in China were published in international English-language journals

Critical appraisal

The methodological quality of the included studies was evaluated using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research [31]. This checklist comprises 10 items, each rated as “yes,” “no,” “unclear,” or “not applicable.” Studies were considered acceptable if at least 60% of the items were answered “yes,” good if 70–90% were “yes,” and high quality if all items (100%) were rated “yes” [52]. The appraisal was independently conducted by two authors (YP-L and FL). Any disagreements were resolved through consultation with a third author (QB-Z).

Data synthesis

This review employed the thematic synthesis method developed by Thomas and Harden to integrate qualitative findings [53]. This process was performed over three stages: (1) two authors (YP-L and FL) coded all results and findings into Nvivo 20 on the basis. (2) looking for similarities and differences among these codes and grouping them into descriptive themes. (3) two researchers used the descriptive themes to generate a set of results and analytical themes. The two researchers independently conducted data analysis and integration in each stage, and a third researcher (YL-L) participated in the discussion in case of any disagreement.

Results

Study selection

As shown in Fig. 1, a total of 1,097 articles were identified through the database search. After removing duplicates, 726 articles remained. Following screening of titles and abstracts, 651 articles were excluded. Full-text review of the remaining articles resulted in 21 studies meeting the inclusion criteria and being included in the meta-synthesis.

Quality assessment

The quality assessment results for the 21 included studies are presented in Table 2. Among these, twenty studies were rated as good, and one study was rated as high quality.

Table 2.

Methodological quality assessment of included studies

Study	①	②	③	④	⑤	⑥	⑦	⑧	⑨	⑩	percent of “Yes”
Andrews et al.[32]	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y	100%
Ingravallo et al.[33]	Y	Y	Y	Y	Y	Y	U	Y	Y	Y	90%
Zhou et al.[39]	Y	Y	Y	Y	Y	Y	U	Y	Y	Y	90%
Bollig et al.[34]	Y	Y	Y	Y	Y	U	Y	Y	Y	Y	90%
Fan et al.[35]	Y	Y	Y	Y	Y	U	Y	Y	Y	Y	90%
Lee et al.[36]	Y	Y	Y	Y	Y	U	Y	Y	Y	Y	90%
Kastbom et al.[37]	Y	Y	Y	Y	Y	U	Y	Y	Y	Y	90%
Rainsford et al.[38]	Y	Y	Y	Y	Y	U	Y	Y	Y	Y	90%
Carter et al.[40]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Cousins et al.[41]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Stewart et al.[42]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Rosemond et al.[43]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Lee et al.[44]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Sussman et al.[45]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Stone et al.[46]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Lambert et al.[47]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Sævareid et al.[48]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Jeong et al.[49]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Klemmt et al.[50]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Thoresen et al.[24]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%
Gjerberg et al.[51]	Y	Y	Y	Y	Y	U	U	Y	Y	Y	80%

PS:① Congruity between the stated philosophical perspective and the research methodology

②Congruity between the research methodology and the research question or objectives

③Congruity between the research methodology and the methods used to collect data

④Congruity between the research methodology and the representation and analysis of data

⑤There is congruence between the research methodology and the interpretation of results

⑥Locating the researcher culturally or theoretically

⑦Influence of the researcher on the research

⑧Representation of participants and their voices

⑨Ethical approval by an appropriate body

⑩Relationship of conclusions to analysis or interpretation of the data

U = unclear; Y = yes.

 Study characteristics

The 21 studies were conducted in the United Kingdom (n = 5), China (n = 4), Norway (n = 4), Canada (n = 2), Australia (n = 2), Germany (n = 1), the United States (n = 1), Sweden (n = 1), and Italy (n = 1). Fourteen studies included both older adults and family members [24, 32–34, 36, 39, 42, 44–46, 49–51], while seven studies involved nursing facility staff [32, 38, 39, 41, 42, 46, 48].

Findings

This study identified three main themes and eleven sub-themes. The thematic classification is summarized in Table 3.

Table 3.

Themes and sub-themes identified through thematic synthesis

Themes	Sub-themes
Attitudes of older adults and families toward ACP	″ Emotional expression facilitated by ACP
	″ ACP facilitates communication among stakeholders
	″ The educational role of ACP
	″ Avoidance of ACP
	″ Ambivalence and uncertainty toward ACP
Individualized needs for ACP	″ Health-related needs
	″ Needs for institutional and psychosocial support
	″ Stakeholder participation in ACP
Factors affecting the implementation of ACP	″ Suitability and accessibility of ACP information
	″ Cognitive status of older adults
	″ Cultural barriers and policy limitations
	″ Staffing shortages
	″ Compassionate multidisciplinary teams
	″ Trusting relationships

PS: ACP  Advance Care Planning

Attitudes of older adults and families toward ACP

Emotional expression facilitated by ACP

The vast majority of older adults and their families recognized ACP as a positive and integral component of the institutional care environment. Many older adults expressed willingness to discuss ACP and make decisions regarding their end-of-life care as a way to achieve a “good death” [36, 46, 50]. Families also acknowledged the value of ACP in clarifying the wishes of older adults and facilitating understanding of their preferences [33, 46]. Some older adults and family members reported that ACP provided a valuable platform for self-expression within nursing facilities. (“One thing my, my Father did mention. he felt as though his comments were, were listened to and they were, erm taken on board.”) [46], and (“. it means very much to have an opportunity to share the thoughts I am preoccupied with.”) [48]. For family members, ACP conversations not only offered a chance to explore future care arrangements but also to listen to and respect their loved ones’ wishes. Furthermore, ACP provided an opportunity for families to plan ahead and express their own views. (“I thought well at least they know now what we want and all that. The fact that we’d discussed it and they knew what we wanted.”) [46].

ACP facilitates communication among stakeholders

Additionally, ACP fosters a trusting relationship between older adults, their families, and healthcare professionals, promoting consensus and optimizing decision-making through open and transparent communication. (“I feel safe because they are interested in knowing my mother better, kind of learning about her situation, how it was before and how things are now, and at the same time to inform me.”) [48], (“You can learn what everyone is thinking instead of ‘I wonder if this is what they want’ guessing all the time.”) [38].

The educational role of ACP

Some family members perceived ACP as having significant educational value, helped them gain a deeper understanding of potential prognostic trajectories and available treatment options. (“Well, they were able to explain a little bit about the different options.”) [38], Some online ACP programs also provided detailed and clear knowledge resources (“It was very comprehensive, it’s very clear and yeah, it’s very relevant.”) [41].

Avoidance of ACP

Some family members exhibit significant avoidance when faced with discussions about end-of-life care and treatment decisions with older adults, often rooted in deep-seated fear [34, 44]. On the other hand, some older adults perceive ACP as relevant only for those who are terminally ill and are reluctant to initiate such discussions due to their current good health [16]. Additionally, certain older adults hold a fatalistic perspective, attributing end-of-life outcomes entirely to fate, and therefore regard ACP as lacking practical significance. (“I’m telling you, making plans in advance is not going to help. How we die is all down to our fate. We’re never going to change that.”) [44].

Ambivalence and uncertainty toward ACP

In the early stages of ACP, some family members experienced complex emotions, perceiving the decisions as “giving up” or “letting the older adults suffer” (“…I feel terrible about it. [upset]”) [49]. Similarly, older adults expressed ambivalence and uncertainty about these decisions, questioning their ability to foresee all possible scenarios (“How can I know everything? If there was a new treatment or something that happened accidently, would I need to make decisions for all possible conditions?”) [35]. Some older adults also voiced concerns about whether their personal wishes would be respected after completing an advance directive (AD) (“A lot of people at the moment may be prolonging the life because of their own issues like guilt or. emotions. Everyone feels I don’t want to let you go you know but that’s what they want. And that is very selfish. That’s what worries me.”) [49]. The timing of initiating ACP discussions was a contentious issue. Unlike terminal cancer patients at the end-of-life stage, the health status of older adults in nursing facilities varied considerably. Some family members identified “deterioration” as the appropriate trigger for these conversations (“I assume that the question will come the day they get sick, that we will be included then.”) [51]. However, some older adults and their families felt that waiting until rapid health decline might be too late to start such discussions (“I want to think it through now, and prepare myself. That’s what I thought.”) [51], (“I don’t like to think about it beforehand because it’s frightening.beforehand you’re frightened, but afterwards you don’t have the capacity anymore.”) [33].

Individualized needs for ACP

Health-related needs

The most frequently expressed health-related concerns of older adults in nursing facilities were maintaining their current health status and remaining active. (“Most of all I don ´t want to get dementia, because there are a lot of people with dementia here and that is bad, just as bad as becoming bedridden.”) [50], (“I don’t want to become a vegetable.”) [34]. When faced with the prospect of disease progression, most older adults preferred to forgo life-prolonging medical interventions. (“I’m thinking that if I took a turn for the worse, and am this old [94 years old], it would be nice to just be allowed to let go in a peaceful way. Without pain and such.”) [51]. These individuals regarded pain management and comfort as the primary goals of care [50]. (“I have no other wish than to be able to die in a calm and peaceful way without pain or anything else terrible.”) [34]. Moreover, dying without pain was closely associated with preserving dignity and autonomy at the end of life. (“I have no other wishes than just to be able to die in a peaceful and quiet way without pain or other terrible things.”) [50].

Needs for institutional and psychosocial support

Most older adults residing in institutions consistently emphasized the importance of companionship, expressing a common wish not to be alone when facing death [34, 50]. While some older adults showed strong interest in ACP, many felt uncertain about how to engage in formal discussions. (“I think ACP is a good thing, No one wants more suffering when dying. However, how are the decisions made? Do they have official power?”) [35]. At the family level, relatives often experienced feelings of guilt and expressed a strong need for support when making decisions on behalf of cognitively impaired older adults, particularly concerning institutionalization. (“Yes, I found it hard to put her in [to residential care].It’s one of the hardest things I’ve ever done. It broke my heart.”) [38]. When older adults were unable to make decisions independently or when disagreements arose among family members, both older adults and their families highlighted the need for sufficient time and space to deliberate and reach consensus. (“The three of us looked at each other and said, ‘What do you think? What do you think? Do you think she’ll accept it? What do we do?’ And then having that sort of family discussion in front of everybody else was something I think we could have been a bit more prepared for.”) [38]. Moreover, participants indicated that these discussions should be deepened and sustained through regular, repeated meetings and ongoing communication. (“There should be regular meetings between the relatives and the staff at least once a month.”) [34].

Stakeholder participation in ACP

Some older adults preferred to first share their insights and wishes with their relatives. (“I would speak to my children beforehand, who know me and know about my situation.”) [50]. Regarding healthcare workers, older adults tended to choose trusted individuals for communication, valuing personal relationships over professional status [45]. (“With a member of the family, definitely; I think that maybe if you’re in a care home or in hospital you can talk to the people around you; with the nurse.there are nurses who make you feel at home.”) [33]. Moreover, older adults regarded nurses as core members of the facility team but pointed out a shortage of physicians within nursing homes [33]. (“I had a good relationship with the contact person as well as the nurse. And they often asked me if I wanted to see the physician. But then I said, I said nearly every time No, there’s no need to do that.”) [37]. However, older adults with families often felt that medical professionals, especially doctors, should lead discussions, as they are responsible for planning and explaining the potential positive and negative outcomes of medical decisions. (“Doctors have to plan, present and explain the positive and negative consequences of particular medical decisions. I don’t think nurses can do that.“) [33]. To ensure the effectiveness and legality of these conversations, one family member suggested the presence of a lawyer during ACP discussions [33].

Factors affecting the implementation of ACP

Suitability and accessibility of ACP information

Families reported that ACP support materials were difficult to understand for those without medical backgrounds due to the use of overly specialized language. (“I started reading the examples that were in that white book, I thought ‘I don’t think this is for me’, like it is more for people who didn’t have a clue what they were on about. I think there was too much also in there that, the medical terminology and I am not a medical person.”) [49]. Some institutionalized older adults had limited education [33] and poor understanding of the ACP concept, often confusing it with end-of-life discussions and mistakenly believing that ACP indicates imminent death (“Well advanced care means near to death, doesn’t it?”) [46]. Furthermore, their ability to self-express is limited by the belief that they are unable to accurately articulate their personal wishes (“We were never used to speaking because, we didn’t know things.not even [how to read] a book, nothing.we didn’t know anything.we only knew when we were a bit hungry.”) [33]. These cognitive and educational limitations contributed to a lack of preparedness and avoidance of ACP (“The idea of signing a do-not-resuscitate order for ourselves is relatively new to me, and I need time to understand this. I also have to find a way to put it when I tell my children. My children and I both need some time to accept it.”) [44].

Cognitive status of older adults

Cognitive status substantially influenced the participation of older adults in ACP discussions. Family members often questioned the capacity of cognitively impaired residents to make informed decisions (“He has a cognitive impairment which has already been evident for some time, so I don’t think he is able to make decisions.”) [33]. For many families, cognitive decline created a sense of helplessness as older adults gradually lost the ability to express their wishes (“We tried to talk to mummy about what care she would like further down the line, but she never discussed it. and I suppose just when we had to start making those decisions mummy was beyond having any input really in it.”) [40]. In such situations, family members often bear sole responsibility for decision-making, experiencing considerable emotional burden throughout the process, which may reduce their willingness to engage in ACP discussions. However, some residents with mild cognitive impairment still demonstrated the ability and willingness to participate in ACP conversations, particularly when provided with supportive communication and appropriate facilitation (“It means very much to have an opportunity to share the thoughts I am preoccupied with”) [48].

Cultural barriers and policy limitations

There is a lack of end-of-life care discussions in nursing facilities, and older adults and families consider death to be a taboo subject (“How do I talk about this?. I feared that this conversation would upset them, and they would stop visiting me.”) [44], (“It’s because she’s doing so well now. Talking about this messes with her head. It’d look like I want her to die sooner. That seems unfilial.”) [44]. Traditional cultural values, especially in Asian contexts, tend to emphasize the collective interests of the family, with an assumption that family members will make the best decisions on behalf of the older adult (“Just like my husband, but the family knew exactly what to do even though he didn’t say anything. We’re used to letting the family make decisions.”) [44]. In some countries, the absence of clear legal policies on ACP adds to the challenges. Some family members expressed concern that ACP decisions could provoke family disputes when opinions differ (“Without legislation, we, the children [of residents] could be accused of murder. One of the children sues another [for murdering his parents without agreeing on the end-of-life care decision]. It can be very serious.”) [39].

Staffing shortages

Although older adults and their families are willing to engage in ACP discussions, healthcare staff often face heavy workloads and time constraints, which hinder meaningful conversations. (“They don’t have time to be too busy. I mean they might be willing, but they just don’t have the time.”) [34, 45].

Compassionate multidisciplinary teams

From the perspective of older adults, empathy and compassion shown by healthcare professionals are fundamental to effectively communicating their needs and wishes. (“There are those who possess empathy [.], somethin one simply notices; they have sensitivity towards someone. And there are those who simply do their work and leave it at that.”) [50]. The multidisciplinary team facilitates the advance care planning process through collaborative decision-making, helping older adults and their families feel connected and supported [38].

Trusting relationships

Trust is essential in professional interactions with healthcare providers to initiate meaningful ACP discussions [33, 40, 43, 48, 50]. (“I would have to say that it is trust which is very, very important.”) [50]. Building such trust requires healthcare staff to gain a thorough and personalized understanding of each older adult’s circumstances and to maintain continuity in care and communication [32]. Families reported that a trusting environment positively influenced the end-of-life experience for both older adults and their families, increasing their willingness to engage in care goal discussions and regular updates. (“I mean, it was time for changing our minds about how deep or far we would go with making something right for her, because at that point it just reached a point where nothing that was done was going to get her out of the bed and allow her to have that kind of life again. And so that’s when we reached a point of just going to pain and comfort measures.) [43]. These findings highlight the vital role of trust in promoting open communication, shared decision-making, and effective ACP involvement for older adults and their families in nursing home settings.

Discussion

This article employed a meta-synthesis to review 21 studies exploring the experiences and perspectives of older adults and their families in nursing facilities regarding ACP. Three main themes emerged: attitudes of older adults and families toward ACP, individualized needs for ACP, and factors affecting the implementation of ACP.

Multiple attitudes toward ACP among older adults and families and the influence of culture

Our review revealed diverse attitudes toward ACP among nursing home residents and their families. While most acknowledged its benefits in enhancing communication [33–35, 48], clarifying care preferences [33, 34, 36, 48, 50], and supporting emotional expression [42, 48], many still avoided ACP discussions, particularly during the early stages of institutionalization [44, 46, 49]. End-of-life communication theory suggests that such avoidance stems from psychological discomfort, fear, and social taboos around death [54]. Although ACP is recognized as a valuable tool for fostering dialogue among residents, families, and healthcare providers [48], it can also be perceived as a premature indication of impending death, which may lead to avoidance [35]. This hesitation is especially pronounced when residents are in good health, as families often believe it is “too soon” to initiate these conversations, resulting in missed opportunities for timely ACP engagement [51]. The timing of ACP discussions is critical to their effectiveness. Studies have highlighted the importance of initiating these conversations during key transitions, such as health decline, treatment nonadherence, inappropriate medical interventions, or prolonged absence of family visits [55]. At these moments, ACP service providers should proactively assess the older adult’s physical and psychological well-being and remain highly sensitive to their care preferences and personal values [51].

Some older adults and their families regarded ACP as a valuable learning process [38]. Structured or online programs significantly enhanced their knowledge and confidence by providing clear and accessible information [41]. These findings highlight ACP’s role not only as a decision-making tool but also as an educational approach that reduces uncertainty and promotes more positive attitudes.

Families play a key role in decision-making across both Asian and Western cultures [44, 47]. ACP has been shown to enhance family relationships by promoting mutual understanding and reducing conflicts [32, 49], which may increase individuals’ willingness to engage in ACP [39, 48]. In family-oriented cultures, older adults often prioritize family harmony over personal preferences [44, 56]. In Western societies tend to define a “good death” in terms of dignity, autonomy, and minimal suffering [57]. East Asian cultures, influenced by Confucianism, emphasize filial piety, valuing life-prolonging treatment and discouraging withdrawal of care [58]. Consequently, older adults’ wishes to forgo aggressive treatment may be perceived as losing hope, and children may experience guilt or moral conflict for supporting such decisions [36]. These cultural tensions can heighten ambivalence among older adults and their families during ACP discussions. To implement ACP effectively in family-centered contexts, providers should assess family decision-making patterns and build trust-based communication to support shared decision-making. Notably, Most studies were conducted in Europe, North America, Asia, and Oceania, while research from culturally diverse regions such as Africa, Latin America, and the Middle East remains limited. To some extent, this limits our understanding of attitudes and barriers toward ACP in other cultural contexts, and the influence of culture on ACP should therefore be interpreted with caution.

Identifying the ACP needs of older adults and families in nursing home

This review highlights that ACP needs among nursing home residents and their families encompass health-related preferences, psychosocial support, and perspectives on participation roles. Overall, when facing irreversible decline, many older adults shift their focus from life extension to seeking dignity, autonomy, and comfort at the end of life [34, 50, 51]. This shift is partly influenced by witnessing distressing experiences of overtreatment in others [59], which reinforces their preference to avoid similar interventions for themselves. Despite this, many residents lack clear avenues to express their wishes or obtain support [35]. Additionally, both older adults and their families emphasize the need for sufficient time and communication to reach consensus and reduce conflicts [34, 38]. Therefore, ACP programs should fully integrate older adults’ personal perceptions of their health status and quality of life, respecting differences in expectations of medical outcomes. The true wishes of older adults should be confirmed by establishing continuous and open communication. In addition, older adults should be provided with adequate informed support and given sufficient room to choose their preferences regarding pain management, palliative care, and their sense of control at the end of life.

Older adults often choose nursing home care due to limited family caregiving but express a strong need for emotional connection and companionship [50]. Many prefer not to be alone near the end of life and emphasize the importance of close relationships and regular communication in ACP [34, 50]. They tend to prioritize discussing end-of-life wishes with trusted family members rather than relying solely on healthcare providers [50]. This emotion-centered approach reflects that ACP is not only a medical decision-making process but also a social interaction involving shared values and emotional support. Increasingly, multidisciplinary collaboration is recognized as essential for ACP implementation [32, 38], involving clearly defined roles for physicians, nurses, social workers, psychologists, and legal professionals [60]. For example, physicians provide medical information and prognostic explanations [61]; nurses and social workers facilitate emotional communication and decision-making [61, 62]; and psychologists help address family conflict and decision-related anxiety [63]. Continuous communication among residents, families, and staff supports a shared understanding of ACP plans and ensures timely updates [39].

Overcoming barriers to promote ACP implementation in nursing home

For older adults and families unfamiliar with ACP, uncertainty around end-of-life decisions can lead to significant fear and anxiety [49]. This often results from limited understanding and the use of complex medical language in educational materials, which may increase distress [49]. Therefore, ACP tools should be tailored to the educational and cognitive levels of users to ensure clarity and accessibility. Supplementing materials with videos [64] and case-based examples may further enhance understanding.

Ambiguity in ACP-related laws and policies contributes to a lack of trust in ACP among older adults and their families [33, 39]. Policy constraints may also discourage healthcare professionals from initiating ACP conversations [60]. In this context, informal ACP may offer a more accessible approach. Informal ACP refers to open-ended discussions between patients, healthcare providers, or family members about personal care and values, conducted at natural and appropriate moments [65]. Such discussions, often embedded in everyday interactions or routine healthcare encounters, can help older adults and their families gradually become more comfortable with the ACP concept and lay the groundwork for more formal discussions in the future [65]. Even if not formally documented, key information should be recorded and revisited as needed. Nonetheless, structured and legally recognized ACP documents remain essential for safeguarding patient preferences in clinical decision-making [49]. Continued policy development is therefore a priority in many countries [39].

Compared to general hospitals, nursing homes face a notable shortage of physicians, with each physician responsible for the medical problems of numerous older adults, limiting opportunities for ACP discussions [34, 45]. In this context, nurses and nursing assistants, who maintain close and continuous contact with residents, serve as key providers of institutional care services [66, 67]. Through ongoing relationships, they offer support, professional expertise, and empathy, helping residents and families cope with caregiving challenges. They are also well-positioned to assess ACP needs and initiate informal conversations [66, 68, 69]. According to Singer’s model, compassion fosters emotional sensitivity and proactive care [70]. Compassionate healthcare professionals are more capable of detecting subtle emotional changes in older adults [50], thereby guiding conversations at appropriate moments and introducing ACP naturally. Therefore, long-term care institutions should prioritize optimizing nursing staff allocation, alleviating their workload, and enhancing communication skills training to build trusting relationships and provide decision-making support for older adults alongside daily care.

Older adults with cognitive impairments should not be excluded

Older adults with cognitive impairment face multiple barriers to ACP, including limited understanding and difficulties in appointing surrogate decision-makers [71]. Some families believe that cognitively impaired individuals lack decision-making capacity [33]. However, compared to cognitively intact adults, those with dementia are at greater risk of unnecessary interventions, repeated hospitalizations, and higher end-of-life costs [72]. Evidence shows that individuals with early cognitive decline can still participate in ACP [73] and value the opportunity to express their preferences [48]. Therefore, the mild cognitive impairment stage should be considered a critical window for initiating ACP, including appointing surrogates and discussing care needs throughout the dementia trajectory [74]. Despite cognitive decline, preserved communication, autonomy, and life experience support engagement in values-based discussions [73]. Various decision aids have been developed to facilitate preference expression in dementia care [75–78]. Long-term care staff should strive to optimize these tools to support goal-concordant care for dementia patients.

Strengths

This review integrates the experiences and perspectives of older adults living in nursing facilities and their family members regarding involvement in ACP from two distinct viewpoints. Including older adults with dementia, as well as family members who have participated in ACP and experienced the loss of an older adult, provides a unique perspective, as these groups are often excluded from previous research. The 21 studies span nine countries, covering both developed regions such as Europe and the United States, and developing countries in Asia, offering a relatively representative sample. This review was systematically conducted using the JBI Qualitative Research Assessment Checklist to critically appraise the quality of the included studies.

Limitations

This review has several limitations. First, the language of the included studies was limited to English and Chinese, which may have resulted in the exclusion of relevant studies published in other languages, potentially restricting the cultural diversity represented in this review. This limitation could introduce cultural bias and affect the generalizability of some findings, especially regarding culturally sensitive topics. Second, although the included studies were generally of acceptable quality, a common limitation was the insufficient reporting of researchers’ cultural or theoretical backgrounds and their possible influence on study findings. To address these potential biases, we conducted a subgroup analysis by dividing studies based on a quality assessment threshold, using 90% of items rated as “yes” as the cutoff. Separate thematic syntheses were performed for each subgroup, revealing that the core thematic structure remained largely unchanged, indicating good robustness of the results. Additionally, we grouped studies by cultural context. We observed some variation in the depth and emphasis of certain themes in culturally distinct groups; however, the overarching thematic structure remained stable. These findings enhance the credibility of our thematic synthesis and further underscore the impact of cultural context on qualitative research outcomes. Finally, this review did not exclude older adults with cognitive impairments such as dementia, which may affect sample representativeness; however, including these participants enriched the perspectives of institutionalized older adults and their families, offering more diverse insights.

Conclusion

Older adults and their families in nursing homes recognize the value of ACP in improving communication, clarifying care preferences, and supporting emotional expression. When discussing end-of-life care, older adults prioritize dignity, comfort, and the presence of family. The educational and emotional benefits of ACP are increasingly acknowledged. However, cultural taboos, limited information, and prevailing values around death continue to impede its implementation. As the population ages, integrating ACP into long-term care is essential to address individual care needs and facilitate timely expression of personal values. Strengthening regulatory frameworks and related policies can help standardize ACP practices and encourage participation. Future efforts should emphasize interdisciplinary collaboration, culturally sensitive communication, optimized staffing, and support for individuals with mild cognitive impairment to establish a more person-centered and sustainable ACP system.

Abbreviations

ACP

Advance Care Planning

CNKI

China National Knowledge Internet

Authors’ contributions

Y.P. Li: conceptualized the article, assessed the quality of the included studies, conducted the data synthesis, wrote the first draft of the manuscript, and revised the manuscript. F. L.: assessed the quality of the included studies and conducted the data synthesis. Y.l.Li& Q. Z.: conducted the data synthesis and provided critical edits. All authors reviewed the manuscript.

Funding

This research was funded by Jinan City-School Integration Development Strategic Project (JNSX2023008).

Data availability

The research strategy, the list of the included articles are in the Table and Supplement Appendix, further inquiries can be directed to the corresponding author.

Declarations

Ethics approval and consent to participate

This study is a meta-synthesis of qualitative based on previously published studies. No new human participants were recruited or involved, and no primary data were collected by the authors. Therefore, ethics approval and consent to participate were not required. The study was conducted in accordance with the principles of the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Conflict of interest

All the authors declare that they have no conflicts of interest.