Background
Community care is defined as providing the right level of intervention and support to enable people to achieve maximum independence and control over their lives [
1]. This is particularly relevant to the increasing number of older people (OP) now living in the community. Many experience chronic and life-limiting illnesses such as dementia, cancer, and progressive neurological conditions, which are associated with, slow decline, and sporadic exacerbations of illness and disability [
2]. Initial adverse impacts of these diseases mostly originate in community settings, thus requiring community-dwelling OP, their families, and caregivers to be increasingly involved in healthcare decision-making.
Healthcare strategies incorporating quality initiatives for chronic diseases and end-of-life (EOL) care in the last year of a patient’s life emphasise the need for engagement in advance care planning (ACP) [
3]. ACP is a process of reflection that enables people to consider their values and goals and subsequently share them with clinicians and relevant others [
4]. ACP should be considered over time and may be communicated or documented to uphold individuals’ wishes for such time that they may lose capacity to make informed decisions [
5]. ACP assists clinicians challenged by treatment cessation decisions, particularly in OP where extended life expectancies may be associated with co-morbidities and increasing frailty [
6]. Further benefits include improved patient satisfaction, quality of life, survivors’ mood and adjustment, earlier hospice admissions [
7,
8], and fewer hospitalizations from nursing homes [
9].
Despite increasing numbers of OP living in communities [
10], studies have demonstrated that up to 70% facing EOL are incapable of care related decision-making [
11], suggesting that early care planning in OP should be prioritized. In a UK study of over 1800 community dwelling people over 65-years-old, only 17% had prepared an ACP document, and many had rarely discussed future care plans with doctors, instead preferring ACP discussions with families [
12]. Interviews with 37 English community-dwelling OP (mean 71.4 years) revealed that they also rarely documented healthcare plans, but often had formal financial and funeral plans. Individual inclinations affected openness to planning, with some just ‘liv(ing) for today’. Poor ACP related legal literacy and understanding about accessing assistance available were also common [
13].
In Australia, with the promotion of the National Framework for Advance Care Directives, 14% of the general population over the age of 18 have now prepared ACP documents, although marked variation exists across states [
14]. Recent research in one metropolitan Australian city found that 27% of nursing home residents (mean 86.2 years) had documented ACPs [
15]. The nursing home residents’ plans were often ambiguous, difficult to interpret, and sometimes overridden [
15]. More recently, an Australian national government funded initiative,
Decision Assist, has been promoted to promote ACP by improved linkages between aged and palliative care services via a phone advisory service [
16]. Further Australian research found that attitudes towards ACP varied amongst migrant groups with first generation Italian migrants preferring decision-making styles that involved family members collectively (together) and Dutch migrants preferring a more individualistic approach [
17].
OP’s carers’, and family members’ views are needed because of their important roles in supporting individuals’ ACP, particularly within community settings [
5,
18]. ‘Listening events’ conducted across the UK to understand EOL concerns amongst OP and caregivers found that many welcomed opportunities to discuss ACP, including those participants from ethnic groups whose desire for information often superseded fears related to ‘bad luck’ that may follow such discussions [
18]. However, North American findings indicate sub-optimal agreement between OP and proxies about EOL care communications [
19]. Improvements in how older community dwellers prepare for EOL are needed, and ACP programs should reflect needs and experiences of those anticipated to use related services [
20].
This research evolved from a project aimed at encouraging consumer participation in ACP. As the majority of respondents were at least 55-years-old, this study specifically aimed at gauging ACP awareness, attitudes, and experiences amongst OP, and unrelated offspring/caregivers of OP residing in the community.
Methods
A qualitative descriptive research (QDR) design with ‘grounded theory overtones’ [
21 p. 337] was used. QDR can include analytical strategies informed by grounded theory [
21,
22]; it does not directly enable theory generation because it does not use theoretical sampling [
21]. Participants were recruited between March and April 2015 via the Health Issues Centre, a not-for-profit, partly government funded agency, which aims to support and inform consumers and the health sector of healthcare improvements. Sampling was purposeful, targeting community dwelling participants, including OP (aged-55-or-over) with/without chronic or serious illness, and unrelated offspring/caregivers of OP with/without chronic or serious illness. Initially, participants responded to general invitations to participate via the Health Issues Centre’s website. To ensure diverse perspectives, participants were additionally sourced through newsletters or emails distributed by a dementia support group and local community health centres in locations with high proportions of culturally and linguistically diverse community-dwellers. Potential participants were invited to discuss experiences of future healthcare planning. The phrase, ‘ACP’, was not used, as previous research indicated local unfamiliarity with the term [
5].
Offspring/caregivers were aged over 18 and not related to older adult participants. Participants were required to have good English comprehension and cognition. In defining the cut of age for inclusion, the research team considered the standard Australian definition of OP [
23], as well as socially constructed meanings of OP, such as the loss of roles accompanying physical decline, and variation in classification of an OP between countries [
24]. As such, 55 was set as the cut-off age for inclusion into the study.
Eight focus groups of between 5–7 participants were conducted by ES and CO, with one group of offspring/caregivers requiring interpreter assistance with a Cantonese interpreter. Five groups were conducted in meeting rooms at the Health Issues Centre and three groups in community health centres. Groups for OP and offspring/caregivers were held separately.
Following consent and demographic detail collection, focus group discussions were conducted using a semi-structured question framework. Questions focused on participants’ understandings and views about ACP; related discussion or documentation experiences; future health concerns for themselves or those being cared for; and experiences related to planning future healthcare. Discussions were recorded and transcribed.
Focus group transcripts were imported into qualitative data management software where they were initially analysed separately as two subgroups: OP and offspring/caregivers of OP. Comparative and cyclic data analysis included inductive line-by-line coding and amalgamation of comparable codes into researcher-created categories. Comparable categories across both subgroups were amalgamated into ‘major categories’. Comparable major categories were then grouped into themes. CO conducted initial analyses of subgroup data. Qualitative inter-rater reliability proceeded, whereby ES and NM read transcripts and these initial analyses. CO, ES, and NM (all experienced qualitative researchers) exchanged analytic views until satisfied with the representations of the subgroup data (categories). After CO developed the major categories and themes, ES, NM, and CO also discussed this analysis and the findings were reworked until all were satisfied with the final statement of findings. Thematic analysis illustration is demonstrated in Table
1.
Table 1
Illustration of comments, which informed major categories (italics) and themes (bold)
Theme 1. ‘Stages of grey’: challenges struggles in transition
|
1.a. Approaching challenging transitions
Why can’t we go to rehab before the operation to know what will be happening in rehab? It’s sort of, that’s what I call advanced care. (female, 65–74-years-old)
1.b Making sense of advocacy
I told them (Chinese older people) I’ve been here (community centre) and I listen about this, about this type of planning, but sometimes they’re not ready, because by my mouth Chinese, speaking Chinese, they not believe. They need someone (government official) to come and talk to the community like that and they more believe like that. If I told them they said, ‘Maybe’ … But I try my best. (female, 55–64-years-old) | We made that decision, me and my wife, made and just said no, we aren’t going to tell her (wife’s mother) that she’s on the steroids because if we do, she won’t take them. She needs them. (male, 45–54-years-old) It's hard to know someone who has been strong and independent all their life, how much input they should have and are capable of having, depending on which day it is that you're asking. (female one, 55–64-years-old) |
Theme 2. ACP literacy and communication
2.a. ACP knowledge and experience
Doctors haven’t raised it (ACP) with me. … and I’ve been told that I was a month away from being dead if I didn’t get a transplant. (male, 55–64-years-old)
2.b. Sociocultural attitudes towards death.
There was just an expectation that we’d all look after one another. (female, 75 + −years-old) | I just thought it meant either turning the switch on or off basically. I didn't realise that it was all to do around medication and things like that. (female two, 55-64-years old) Yeah, some old people (in Chinese culture) just want to live, even though they can’t move, they can’t even get off the bed – they still can eat something, they still want to have a life. (Focus group with interpreter; unable to determine participant) |
Theme 3. Challenges contemplating mortality
3.a. Previous life and health experiences
I keep putting it (ACP) off. And I’m put off even more when I look at and aware of what occurs in elder abuse, …, or children often, grabbing that power of attorney very quickly in order to make sure that the house or the money comes to them. (male, 65–74-years-old)
3.b. Planning for hypothetical circumstances
You couldn’t cover everything because we don’t know what’s going to happen to us, do we, in the hospital; anything could happen, so we can’t cover every illness or outcome. (female, 66–64-years-old) | My first thing would be that somehow they find a way to get his kidney working better. Right? So that there’s no need for anything else. … It’s hard work trying to keep him encouraged and to try and look forward to have things. And my view would be that I’d just like him to go in his sleep one night. (female, 65–74-years-old) (Father said) ‘If something happens to your mother I now want to go in somewhere else and sell the house.’ Well, that was a complete change from what he had told me five years ago. So what … if you lock yourself into too tight an advance care plan (and) things change? (female, 45–54-years-old) |
Discussion
ACP programs traditionally commence with the assumption that participants are ‘planning ready’, with knowledge, skills, and cognition available to proceed with the two central elements: appointment of a SDM, and recording of preferences regarding specific treatments and interventions. This study, however, supports claims that though ACP is well received in the community amongst OP and their offspring/caregivers; personal, relational, and socio-cultural aspects should mitigate consideration of ACP programs focussed on document completion in short timeframes [
17,
25]. This study’s findings reinforce that many people consider ACP components over time [
17,
26]. Barriers may include predicting future health decisions [
17], low health literacy around ACP and associated legal parameters within community settings [
7,
27], and difficulties talking about death [
27]. Furthermore, when hope and optimism have been used as longstanding coping mechanisms, offspring/caregivers can be challenged in undertaking the SDM role of understanding OP’s future care wishes and planning for their possible incapacity.
This study also highlights that ACP programs for community-dwelling OP and offspring/caregivers requires accommodation of OP’s variable and often fluctuating cognitive capacities and competency spectrums. Specific concerns in ACP may arise when OP enter the capacity ‘grey zone’ (Fig.
1), with fluctuating yet overall declining cognition and executive functioning (reasoning and understanding decisional consequences), and increasing frailty. Educational interventions such as written memory aids [
28] may be needed to help these vulnerable OP to better understand the value of ACP and future planning.
Given that variants of OP’s incompetence and incapacity may arise in different situations, flexibility of legal considerations and responses is required [
29]. Underpinning this recommendation is the need to respect the dignity of the OP, whose competence is fluctuating, with protection of remaining capacity as a starting point. Offspring/caregivers’ concerns about fluctuating cognition and a slow deterioration suggest that a relational and contextual approach to capacity assessment is needed when OP are in the capacity/incapacity ‘grey zone’. This is comparable to a process consent methodology in dementia research [
30]. This acknowledges that capacity is situational, potentially present when a legal threshold is crossed, and often strengthened within caring relationships. It involves critically reflecting on whether the person is consenting, has informed appreciation of consent, and whether lack of objection is genuine.
As the numbers of OP living in the community increase, the legal issue concerning the incompetent older person becomes more relevant. Though the formal nomination of a SDM or representation by next of kin (commonly a partner or family member) may seemingly be a simple process, it has the potential to mask the complex reality of medical decision-making on behalf of incompetent OP. Proxy decisions may be made based on personal motivations, highly charged emotions, and with lack of supervision [
31]. In addition, stories presented by offspring/caregivers in this study reflected relative ignorance and anxiety about managing the SDM role delineation when the OP’s competency was uncertain, that is, when and how to become involved in which decision-making areas. Development of interventions, which support SDMs’ preparation for future decision-making, is an important area for future inquiry.
Overall, this study’s findings reinforce the importance of ACP but suggest that ACP programs should accord with the ‘life-cycle model’. Such a model proposes that aspects of advance care planning should occur throughout the continuum of the human life cycle. Discussions about life values and goals should commence at key life maturation points such as turning 18, being married or starting a family having children, and throughout primary health care in the community, and with the diagnosis of a serious illness and its progression [
7]. Such a process normalizes ACP and reduces emotional burden that may otherwise arise in those who have not adequately prepared for making end-of-life care decisions. [
7]. An ACP life-cycle model should encompass broad information and support, focussing on: (a) planners’ understanding about why ACP is helpful and how they can manage the process; (b) how offspring/caregivers can broach ACP with OP and cope when OP persistently decline discussions; (c) SDM understanding of strategies for managing OP’s process consent when cognition is fluctuating, and (d) assisting with distress sometimes experienced following substitute decision making. ACP programs also need to accommodate diverse individual and collectivist decision-making styles used by planners to determine meaningful issues, goals, and preferences [
25].
Limitations and recommendations
Findings offer insight into how ACP may be considered by community-dwelling OP and offspring/caregivers. However, they only reflect views of those able to consider EOL care, attend focus groups, and have mostly Anglo-Saxon or Asian origins. Further research avenues may consider concerns about ACP ‘non-discussants’ and preparedness for SDM, including how best to approach decision-making with OP within the indeterminate capacity/incapacity ‘grey-zone’.
Acknowledgements
The authors wish to thank the people who participated in the focus groups.