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Abstract
Objectives The study was conducted in Western Australia, focusing on the attitudes of older, rural, non-hospitalised people towards newly legislated advance care planning (ACP) documents. This study explored baseline awareness and perception of advance directive (AD) forms and factors relevant to their utilisation, using the transtheoretical model as a theoretical framework.
Methods Sixty-two adults were recruited from residential aged care facilities, community care organisations, general practice, an oncology service and a law firm. Semi-structured interviews were undertaken. These were transcribed and thematically analysed by the authors.
Results Participants gave responses that were consistent with different stages of the transtheoretical model. Perceived susceptibility to the negative consequences of not engaging in AD form utilisation was a trigger for further contemplation. The presence of adequate personal empowerment was important for successful completion of AD forms. There was also qualitative evidence of a negative relationship between perceived susceptibility and empowerment regarding AD form utilisation.
Conclusions Promoting balance between a person's perceived susceptibility and empowerment may be an effective method of increasing engagement with AD forms.
- advance care planning
- perceived susceptibility
- transtheoretical
- advance directive
- empowerment
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Introduction
Advance care planning (ACP) is a process of identifying and sharing life values and goals, to ensure medical treatment is concordant with a patient's wishes if they are unable to make or communicate decisions.1 This may involve discussions with family members or health professionals, the appointment of a healthcare proxy or guardian, and/or completion of a written document.2 Research has indicated that facilitated ACP can improve the quality of end-of-life care.2 ,3
Australian policy-makers are responding to calls for better end-of-life care through legislation that supports ACP. This process is occurring in different ways and at different rates between states.4 In Western Australia, before 2010, living wills and ‘next-of-kin’ were recognised under common law. In 2010, legislation was enacted to enable adults with legal capacity to complete legally binding advance directive (AD) forms: an advance health directive (AHD) and/or enduring power of guardianship (EPG).5 ,6 Understanding the process of AD form uptake will be important if the legislation is to underpin comprehensive ACP across the community.7 ,8 Several studies from eastern Australia have shown low levels of AD form utilisation.9–12 There are no published data on uptake of AD forms in Western Australia.
Recent research has conceptualised the components of ACP (consideration of treatment goals, discussion with others, and completion of AD forms) as discrete health behaviours and explored these within the transtheoretical model framework.13–16 This model proposes stages of readiness for engaging in a health behaviour (precontemplation, contemplation, preparation, action and maintenance),17 with emphasis on considering personal ‘pros and cons’ in the early stages, and pragmatic, action-related processes during the later stages.18 The transtheoretical model proposes that an individual adopting a new health behaviour will view the change as personally important and be adequately equipped to make that change.19
With respect to completion of AD forms, an individual could be precontemplative (uninformed and/or with no desire to raise awareness of AD forms), contemplative (aware of the ‘pros and cons’ of completing an AD form), preparing (intending to complete an AD form soon, with practical strategies in place) or in an action/maintenance stage (having completed an AD form and taking/taken steps for distribution).
The transtheoretical model is a unifying theory of health behaviour which highlights a number of constructs also proposed by other models.19 Two such constructs are perceived susceptibility and self-efficacy.13 Perceived susceptibility is an individual's appraisal of their vulnerability to a negative health outcome.20 In the ACP context, this perceived susceptibility may be viewed as an individual's understanding of their vulnerability to suffering at the end-of-life. Self-efficacy refers to an expectation of personal mastery and ability to exert control in a given situation.21
The constructs of perceived susceptibility and self-efficacy may be influential in the decision to utilise ACP.13 However, barriers to ACP uptake also exist outside of the self (eg, lack of information, little time with health professionals and low family support),22 suggesting the importance of external resources. Empowerment is a broad idea incorporating both internal and external resources. Along with self-efficacy, good relationships with helpful others and access to valued resources also contribute to personal empowerment.23 ,24
Within the context of the transtheoretical model and its proposed constructs, this study explored baseline awareness and perception of AD forms in a community still in the early years post-legislation, and factors influencing inclination and ability to complete these forms. The ACP health behaviour focused upon was successful completion of an AD form.
Methods
The University of Western Australia and Western Australian Country Health Services Human Research Ethics Committees approved the protocol. The ‘sociology of knowledge’ theory underpinned the methodology of this study.25 This social theory proposes that power imbalances can privilege dominant voices in society over others.26 The older, rurally located participants in this study constitute a relatively disempowered group, with many highly dependent on health services and family support.27 ,28 The researchers were particularly sensitive to the potential influence of family member or health professional discourses on the reliability of a participant's response.
Sampling and data collection
This study was conducted in Western Australia in a rural community of 36 000 people, 400 km from the nearest tertiary hospitals. Purposeful sampling was used to recruit older, non-hospitalised adults who varied in terms of their health status and levels of independent living, with the aim of achieving maximal variation on these dimensions.29 ,30 Participants were recruited through residential aged care facilities (RACF), a community care organisation, the local outpatient oncology service, mail-out through GP clinics, and referrals from doctors and lawyers of those who had recently undertaken ACP discussions (see table 1). In the first three settings, a nurse from that organisation screened potential participants, and excluded those with clinical diagnoses of advanced dementia or untreated mental illness. The nurse also determined the appropriateness of approaching residents who had acute illness or discomfort. Recruitment from each group ceased when no new themes emerged from the interviews.30
Characteristics of participants and interviews conducted in different groups
Two authors (KA, a palliative care physician and CS, a qualitative health researcher) created a discussion guide (see online supplementary appendix 1) designed to generate content relating to the participant's awareness, perceptions, and their intention to complete AD forms. Discretion was used in deciding whether to pursue potentially sensitive lines of questioning. As part of eliciting informed consent, the interviewer gave a brief explanation of how the AD forms worked, to ensure that participants understood the questions and were able to give meaningful responses.
Fifty-five interviews, from 6 to 58 min long (mean 20 min, SD 10 min), were conducted with a total of 62 participants. Interviews were conducted in the participant's place of residence, with family present (N=5 interviews) if requested by the interviewee. Some couples (N=9 interviews) asked to be interviewed together. The interviewer recorded observations of any instances of family influence on participant responses; these were discussed during meetings with other authors.
Analysis
The collection and analysis of data occurred concurrently, using a descriptive, exploratory method. Immersion was achieved by listening to each interview recording and making field notes ‘in the interviewee's language’ soon after each interview.31 All interviews were transcribed verbatim. In the initial phase of analysis, 29 interviews representing all age, gender and participant groups, were read and thematically coded by CS using NVivo9. Another author (AB) independently coded a sample of these transcripts (N=13), and joint discussion informed the development of a preliminary coding framework. Sections of text relating to individual codes were grouped and read horizontally32 to ensure the integrity of each code; codes were merged or unpacked where necessary, and then categorised into higher order themes. The initial framework was verified during the process of coding the remaining 26 transcripts. Memoing during this phase documented the addition of any new codes or framework alterations. A total of 401 codes were established during analysis of the first set of transcripts, and an additional 35 codes were added or modified during analysis of the second set, suggesting stability of the coding framework across the sample of participants.
Results
Participant characteristics
Table 1 shows the characteristics of participants and AD form uptake by the different recruitment groups.
The majority of participants expressed a positive view towards AD forms although many were previously unaware of their existence. Some others had never articulated their thoughts about the issue prior to the interview.
Key themes
There was evidence that, at the time of interview, participants were in different stages of readiness to engage in completion of an AD form. Key factors associated with inclination and ability to use AD forms were perceived susceptibility and level of empowerment.
Stage of readiness to engage in AD form completion
Participants were in differing stages of readiness to engage in AD form completion. Some demonstrated features of precontemplation, having no intention of taking action towards completion of AD forms and being content with that decision. One participant explained her rationale with reference to her coping style:
I don't think I would want to talk about it. Because again it is accelerating the inevitable and the less you think about it, the easier you get through the day.
Others expressed a feeling of comfort with things the way they were, showing no intention of considering a change in their behaviour:
I won't try and change me ways or anything.
Participants with features of the contemplation stage had given some thought to completing AD forms in the foreseeable future. They often suggested that AD form completion was a behaviour that fitted with their personal values:
No one else has had any say in the rest of my life so why should they have a say when I'm down at the last block, there's only one person and that's me.
Their responses also showed a depth of engagement with the issue, demonstrating awareness of both the ‘pros’ and ‘cons’ of completing an AD form:
And [nominating a guardian] would make it easier for whoever has to look after me but by the same token I don't believe in giving away my authority or anything.
Some showed evidence of being in the preparation stage, expressing an established intention to complete an AD form in the near future, along with practical strategies that would move them towards action:
I think next time I go to [doctor], I will run it past him and get his ideas.
Lastly, some participants were in the action/maintenance stage, having completed an AD form. Some of these participants were engaged in the practical task of ensuring that copies of their AD form were distributed appropriately:
…And then I would like a copy at the hospital, copy at the doctor's surgery, a copy here [RACF] on file and one for myself, that makes four copies.
Perceived susceptibility
For participants who were contemplating, preparing or had already taken action, there was increased reference to a cluster of subthemes associated with perceived susceptibility to the negative consequences of not engaging in AD form completion. Perceived susceptibility subthemes included a personal or family experience of ill health, experiences of end-of-life care, change in life circumstances or prompting from their doctor (see table 2).
Perceived susceptibility subthemes with illustrative quotations
Experiences with ill health or end-of-life care were powerful, lived experiences which influenced the participant's stated healthcare wishes. Some participants reported how changes in life circumstances left them feeling vulnerable and dependent, triggering a desire to document their healthcare wishes. For some a prompt from their doctor was enough to trigger contemplation of AD form completion.
Perceptions of the negative consequences of not engaging in AD form completion were variable and related to participants’ personal situations. Some expressed fears relating to a lingering, physically painful death, while others foresaw the prospect of physical or mental incapacity and worried that they would burden those who cared for them. Participants referred to perceived susceptibility to these negative consequences as a trigger, which prompted them to contemplate AD form completion:
I've been nursing for years and years… and seen some bloody horrendous things happen. And I made up my mind early in the piece that I would… be in control of my destiny.
Empowerment
Participants who had taken action by completing an AD form typically referred to a cluster of enabling factors associated with empowerment. These included a sense of personal control, as well as external resources such as access to a supportive doctor and family support (see table 3). An absence of these factors was associated with disempowerment and inability to act on stated intentions.
Empowerment subthemes with illustrative quotations
For participants who were contemplating AD form completion, a sense of personal control over healthcare was important, but they also reported looking to external supports for emotional and practical assistance.
Balance
For some participants, there was a marked negative relationship between perceived susceptibility and empowerment. That is, the same events which boosted perceived susceptibility (eg, personal experience with ill health), also acted to disempower the individual (eg, discharge to RACF with lack of access to a regular doctor). On the other hand, some participants gave responses suggesting adequate levels of empowerment, but low levels of perceived susceptibility, often referring to AD forms as unnecessary in their personal situation. The seesaw effect of perceived susceptibility and empowerment on AD form utilisation can be highlighted by exemplar cases from the data set (see table 4).
Exemplars illustrating the interplay between perceived susceptibility and empowerment in advance directive form completion
Discussion
This rural Australian sample of older, non-hospitalised adults expressed general support for ACP and the use of AD forms. Our results support use of the transtheoretical model in understanding engagement with ACP behaviours, including AD form completion.13–16 Two important ideas relating to AD form completion are perceived susceptibility and empowerment.
There was evidence that participants were in different stages of readiness to engage in AD form completion. A stage model like the transtheoretical model is implied, as participants referred to AD form completion as a process with identifiable transitions that occurred along the way. While the cross-sectional design of this study allowed just a single ‘snapshot in time’ from each participant, the interview format yielded rich detail which provided insight into the participants’ own perspective on their stage of readiness. Narrative elements such as ‘because’ and ‘so then I’ highlighted significant experiences and triggers relevant to stages and the transition between stages.33
Previous research using the transtheoretical model to interpret utilisation of AD forms has suggested that individuals focus on the cognitive and affective, or ‘experiential’, aspects of change during the contemplation stage, and place greater emphasis on the behavioural aspects of change during the later stages.18 We propose that perceived susceptibility, which is thought to have strong cognitive and affective components,34 is an important component of the experiential aspects of behaviour change. Similarly, empowerment may be associated with the practical, enabling factors which are emphasised in the behavioural aspects of change during the preparation, action and maintenance stages.
Perceived susceptibility
Perceived susceptibility to the negative consequences of not engaging in AD form completion was a key theme, expressed by participants as a trigger for contemplating the health behaviour. Previous research corroborates the subthemes identified in this study, with experiences of close others in end-of-life care and personal or close other experiences of ill health being associated with perceived susceptibility.13 ,35
‘Triggers’ are particularly relevant to the transtheoretical model, which proposes a process of ‘punctuated equilibrium’, in which the relative stability and comfort of the precontemplation and maintenance stages is punctuated by brief transitions into more dynamic, less comfortable stages.36 For those individuals who perceive the process of completing AD forms as uncomfortable, a sense of perceived susceptibility may trigger contemplation, due to recognition that not taking action may lead to greater future discomfort.20 Based on our data, the trigger for contemplating AD form completion was an individual's perceived susceptibility to the potential for suffering at the end-of-life, rather than specific prognostic information.
Empowerment
Participants who had taken action in completing AD forms referred to the presence of internal (sense of personal control) and external (access to doctor, doctor support, family support) enabling factors related to the key theme of empowerment. A sense of personal control over healthcare outcomes37 and the presence of social support38 ,39 have previously been associated with completion of AD forms. The absence of one or more of these enabling factors was expressed by participants who had a desire to take action, but felt unable to do so.
Empowerment is expressed in individual ways by people in varying contexts,40 and can be considered a pre-requisite for action, a process and an outcome.41 Some participants implied that completing an AD form may be an empowering process in itself, an idea which would be supported within the transtheoretical model.18 It is also likely that active participation in specifying medical treatment wishes requires a level of empowerment.37 ,41 An empowered person well equipped with support resources may respond to feelings of perceived susceptibility by taking direct action to ‘fix the problem’, while those disempowered, with limited access to resources, suffer from their awareness of risk and inability to take control of their situation.42 For some individuals, a fully informed and supported decision to not engage in ACP may be their most significant expression of empowerment.43
Balance
We propose that transition through stages of readiness towards AD form completion requires adequate levels of perceived susceptibility and empowerment. We also observed a negative relationship between perceived susceptibility and empowerment, particularly among the frail elderly cohort recruited here. This is supported by previous research, which shows a directional association between health status and social support,44 with loss of health status preceding a loss of social support.45 Those highly dependent on a small support network of close family might also be unwilling to engage in AD form completion if they felt that it could lead to conflict with family members and loss of family support. Hence those with deteriorating health may have less access to the support resources required for AD form completion.
Implications for practice
The proposed balance model suggests that a person's stage of readiness to engage in AD form completion is associated with both internal and external factors. Prompting by a trusted doctor triggered insight and was associated with increased perceived susceptibility. In some cases, a doctor was also able to provide information and support that empowered the participant to complete an AD form. In other contexts, better engagement between doctors and patients has been suggested to increase patients’ self-efficacy.46 ,47
It was noticeable that participants referred positively to instances in which their doctor had prompted discussion about end-of-life care wishes. This is consistent with international research which has shown that patients expect their doctor to initiate ACP discussions prior to acute situations,37 ,48 ,49 and express greater satisfaction with their doctor following these discussions.50
The challenge for doctors and healthcare services is assessing the individual's perceived susceptibility and empowerment, ‘walking the line’, and intervening where necessary to promote balance (see table 4). Our model suggests little progress would be made in persisting with trying to increase a person's awareness of AD forms as tools or forcing them to confront the consequences of not engaging in planning when levels of empowerment are low.42 Rather in these circumstances, focusing on practical assistance and emotional support may be much more useful.
Limitations and future research
This study has some limitations. Our allocation of participants to a stage in the transtheoretical model was based on open-ended responses to interview questions, rather than using recently validated instruments,51 ,52 or probing for specific dates to ‘quantify’ intentions to engage in ACP. This methodology also left us unable to quantify an individual's level of personal empowerment. However, we believe participants’ responses were consistent with the broad conceptualisation of empowerment.23 ,24
The decision to interview some participants with family present may have resulted in responses designed to please family members, rather than expressing what an individual actually felt. However these ‘paired’ interviews also provide a more naturalistic setting for personal discussions, enabling researchers to observe family dynamics, and enabling close family members to provide valuable ‘reality checks’ on the responses given by an individual. Combining individual and ‘paired’ interviews has been suggested as an optimal strategy which draws on the benefits of both methods.53 In our study the partner's attitude towards the use of AD forms did appear to influence the individual's expressed views in some cases, illustrating the importance of family support for the use of AD forms.
Our recruitment method resulted in a sample that was predominantly from a white, western European cultural background. One recent study has suggested that the construct of perceived susceptibility as a predictor of preventative health behaviours may not be applicable for some non-western cultural groups.54 A substantial body of research also suggests the importance of cultural factors in preferences for end-of-life care decision-making.55–59 Hence the ‘balance model’ presented may not necessarily generalise to other cultural groups in rural Australia.
Our proposed model has generated quantifiable hypotheses, and future research may employ recently validated instruments51 ,52 to examine how perceived susceptibility, empowerment and the balance between these constructs influence stage of readiness to engage in AD form completion. We predict that perceived susceptibility may be associated with transition from the precontemplation to contemplation stage of readiness, while empowerment may be associated with transition through the later stages of the model. Further qualitative work may also focus on exploring whether the key themes identified in this study are similarly applicable for other cultural groups. It will be important to understand whether an individual's own perceived susceptibility to the negative consequences of not engaging in ACP is aligned with the perceptions of family members and health professionals.
Conclusion
Perceived susceptibility and empowerment are proposed as two significant constructs which deserve a place when applying the transtheoretical model to AD form completion. Particularly within the elderly cohort, these two factors often work in opposition, and promoting balance may improve engagement with this aspect of ACP. The doctor and healthcare team can play a vital role in this dynamic.
Acknowledgments
The authors would like to acknowledge Ms Emma Sodano for transcription assistance, the referring organisations for their time and enthusiasm, and Dr Caroline Bulsara and two anonymous reviewers for helpful comments on a draft version of this manuscript.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Files in this Data Supplement:
- Data supplement 1 - Online appendix
Footnotes
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Funding This research was supported by a small project grant from the Rural Clinical School of Western Australia.
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Contributors CS assisted in the planning, conception and design of the study, collected and analysed the majority of the data, and participated in the write-up of the study. KA planned and conceived the study, assisted in study design and data analysis, and participated in the write-up of the study. AB participated in data analysis and the write-up of the study. CS takes responsibility for the content of the manuscript as guarantor.
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Competing interests None.
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Ethics approval This study was approved by the University of Western Australia and Western Australian Country Health Services Human Research Ethics Committees.
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Provenance and peer review Not commissioned; externally peer reviewed.