Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people
© The Author(s). 2017
Received: 7 September 2016
Accepted: 9 December 2016
Published: 13 January 2017
Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community.
Qualitative descriptive research, which included focus groups with older people (55+ years) and older people’s offspring/caregivers living in an Australian city and surrounding rural region. Data was analysed using an inductive and comparative approach. Sampling was both convenience and purposive. Participants responded to web-based, newsletter or email invitations from an agency, which aims to support healthcare consumers, a dementia support group, or community health centres in areas with high proportions of culturally and linguistically diverse community-dwellers.
Eight focus groups were attended by a homogenous sample of 15 older people and 27 offspring/caregivers, with 43% born overseas. The overarching theme, ‘shades of grey’: struggles in transition, reflects challenges faced by older people and their offspring/caregivers as older people often erratically transition from independence and capacity to dependence and/or incapacity. Offspring/caregivers regularly struggled with older people’s fluctuating autonomy and dependency as older people endeavoured to remain at home, and with conceptualising “best times” to actualise advance care planning with substitute decision maker involvement. Advance care planning was supported and welcomed, x advance care planning literacy was evident. Difficulties planning for hypothetical health events and socio-cultural attitudes thwarting death-related discussions were emphasised. Occasional offspring/caregivers with previous substitute decision maker experience reported distress related to their decisions.
Advance care planning programs traditionally assume participants are ‘planning ready’ to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people’s advance care planning understanding and management, and also supports offspring/caregivers’ development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people’s decision-making when in the ‘grey zone’, with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person’s lifespan.
KeywordsAdvance care planning Aged Qualitative research Community health services Caregivers
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 . 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 . 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) . ACP is a process of reflection that enables people to consider their values and goals and subsequently share them with clinicians and relevant others . 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 . ACP assists clinicians challenged by treatment cessation decisions, particularly in OP where extended life expectancies may be associated with co-morbidities and increasing frailty . Further benefits include improved patient satisfaction, quality of life, survivors’ mood and adjustment, earlier hospice admissions [7, 8], and fewer hospitalizations from nursing homes .
Despite increasing numbers of OP living in communities , studies have demonstrated that up to 70% facing EOL are incapable of care related decision-making , 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 . 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 .
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 . Recent research in one metropolitan Australian city found that 27% of nursing home residents (mean 86.2 years) had documented ACPs . The nursing home residents’ plans were often ambiguous, difficult to interpret, and sometimes overridden . 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 . 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 .
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 . However, North American findings indicate sub-optimal agreement between OP and proxies about EOL care communications . 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 .
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.
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 . 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 .
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 , 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 . 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.
Illustration of comments, which informed major categories (italics) and themes (bold)
Older People’s comments
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)
Characteristics of participants
Older People (n = 15)
Offspring/caregivers (n = 27)
Republic of Ireland
Did not state
Relationship to older adult
An overarching theme emerged, ‘shades of grey’: struggles in transitions. This reflects the challenges faced by both OP and their offspring/caregivers in contemplating ACP when the OP is in the ‘grey zone’ of ageing; transitioning from independence to dependence and capacity to incapacity. Additionally themes were ACP literacy and communication, and challenges contemplating mortality.
‘Shades of grey’: struggles in transitions
Approaching challenging transitions
“Where can I go, to access services?… that’s advanced care planning… autumn of your life…Living well and hopefully preventing some of the issues that currently ageism I think is.” (female, OP, 65–74-years-old)
“The difficult thing … It's identifying that point where you've got to say that's enough… life isn't black and white. You can't just go from one day to the next and now today is the day that we're going to enact the plan. It's the stages of grey between where you are.” (female, daughter, 55–64-years-old)
One daughter’s attempts to prepare a participant through this transition by suggesting a number of options, including an assessment for residential care, triggered the older person’s response, “I may as well jumped off a bridge, I was so disgusted”.
Making sense of advocacy
Many offspring/caregivers were informal advocates, acting on behalf of health and social support systems to assist ageing OP. Offspring/caregivers also regularly said that vulnerable OP they cared for declined community-based supports. Further, offspring/caregivers could struggle to access OP’s financial or medical information when trying to understanding their needs and entitlements. Though dealing with OP through these “shades of grey” posed stressors, some adopted strategies to help them cope as caregivers while transitioning to likely SDM. This included acceptance of OP’s excessive demands, or assessing how to respond to OP’s fluctuating autonomy and dependency, as needed. To prepare for the SDM role, individuals also involved a patient advocate (an independent paid/unpaid professional to assist them in achieving health care outcomes), completed dementia care-related training, sought information from health professionals, and attended OP’s medical appointments when allowed.
“You’ve got a maternal healthcare line, you’ve got, I don’t see that there is an ageism care line.” (female, OP, 55–64-years-old)
ACP literacy and communication
ACP knowledge and experience
“I haven’t actually heard of it (the term, ACP) … My daughter is my power of attorney but I haven’t done the sickness one.” (male, OP, 65–74-years-old)
“With my mother-in-law … dementia wasn't on my radar.... We had to make some pretty serious decisions very quickly because she was interstate … documents between states are different …. They found three aged care facilities. And we had the 10 min to say yes or no.... It was just a nightmare.” (male, partner, 55–64-years-old) Sociocultural attitudes towards death
Understanding of ACP and related communication was also affected by socio-attitudinal reactions towards death. Longstanding cultural death ‘taboos’ within some families presented challenges, though some suggested that this was dissipating, especially amongst OP from Asian backgrounds, with funeral discussions now “quite a popular topic”.
“So we sorted out that he (husband) was not going to approach it the way my daughter and I would, and she would be more likely to obey my wishes than he would.” (female, OP, 75-plus-years-old)
“Well, what do you recommend? You're the doctor. I'm not.’ And he said, ‘Well, I think he should go back on the Aricept.’ I said, ‘Okay’ … And he spent two-and-a-half years in the locked dementia ward … that was disgusting. … I've had a lot of psychosomatic problems with depression. But if I had that piece of paper (ACP document) it would have been easier.” (male, partner, 65–74-years-old)
While some OP were hesitant to ‘burden’ offspring with ACP involvement, another argued that ACP alleviated decision burden, “that could affect them for life”. Attitudes towards ACP documentation also varied. While some believed that documents could “prove” they were fulfilling carer’s wishes, others regarded ACP documentation as too formal or “complicated”.
Challenges Contemplating Mortality
Previous life and health experiences
“So we have got a plan, it’s not formalised, but we’ve spoken, I suppose in our situation, the reason why we spoke with her was because we’d gone through my father’s death.” (female, daughter, 55–64-years-old)
“Your life’s finished when you’ve gone there…. I reckon 99% of the people in nursing homes would love to die.” (female, OP, 75-plus-years-old)
Where optimism and hope had been key tools for survival, planning for incapacity may be resisted. For example, one carer whose husband had long-standing kidney disease, was surprised and distressed by the introduction of an ACP; which she considered unnecessary because the focus always remained on keeping him alive.
Planning for hypothetical circumstances
“(Husband) had a bit of a health crisis about 12 months ago. … when he came out of this acute crisis, he said to me he was afraid people that people would turn off the switch. So there was a complete change of his limited understanding … (now) I don't know whether I'm actually fulfilling his wishes.” (female, partner, 55–64years-old)
“It’s really difficult to get that clarity around it. I feel as though even if it was written out in a document … life isn’t that black and white.” (female, daughter, 55–64-years-old)
“Who helps you do it? What do you write down? Is there anyone to guide you do that? Can you get advice from somebody about that?” (male, OP, 65–74-years-old)
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 , low health literacy around ACP and associated legal parameters within community settings [7, 27], and difficulties talking about death . 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  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 . 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 . 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 . 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 . 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. . 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 .
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’.
Debates about best ACP approaches seldom include evidence about how people consider the meaning of ACP, or their preferences about approaching it . This is especially evident for proxies potentially actualising individuals’ ACPs. Community-dwellers depict ACP as a relational process for OP, reflecting a matrix of individual, family, social-cultural, and systemic factors affecting motivations to discuss and complete related documents. Typical ACP programs which ‘step’ consumers through documents usually assume that consumers are ‘ready’ to plan all components, when this is in fact seldom the case. Plausibly, many current ACP programs undermine the true issues faced by OP and their offspring/caregivers as they face the uncertainty of the in-between space of living and dying .
Three younger people with chronic/serious illnesses also attended one focus group but their views are not included. Included were views from one offspring/caregiver caring for two parents, now deceased, and one OP caring for an adult offspring with Downs Syndrome.
Advance care planning
Qualitative descriptive research
Substitute decision maker
The authors wish to thank the people who participated in the focus groups.
The Health Issues Centre was financially supported by the Department of Health and Human Services, Victoria.
Availability of data and material
The datasets generated during the current study are not publicly available, due to participants only consenting for their information to be used for this study, but are available from the corresponding author on reasonable request.
All the authors (NM, CO, ES) were involved in developing the design and method. CO and ES performed the data collection. CO led data analyses, and NM and ES followed an inter-rater reliability procedure. The draft manuscript was written by NM and CO. All authors (NM, CO, ES) were involved in reading and revising the manuscript critically and approved the final manuscript.
The authors declare that they have no competing interests.
Consent for publication
Textual statements from individuals to illustrate findings are in accordance with the consent they provided to participate in the study. (No identifying participant information is included).
Ethics approval and consent to participate
The Human Research and Ethics Committee at Cabrini Health Australia approved this research (Number: 02-11-05-15). Participants read an information statement about the research. The researchers also reiterated the nature of the research at the commencement of the focus groups. Participants’ presence in the focus groups implied consent.
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