Abstract
Care staff in residential aged care facilities (nursing homes) in Australia are obligated, under the Australian National Framework for Action on Dementia 2015–2019, to support residents to exercise choice and make decisions. Research indicates, however, that care staff are often given little guidance regarding which residents’ decisions should be supported or how to make decisions on their behalf. This lack of guidance can result in a denial of residents’ rights and inconsistent treatment by staff, placing residents’ wellbeing at risk. Through providing an analysis of the responses of staff at RACFs in Victoria and Queensland to two case scenarios, this study seeks to provide some understanding of the difficulties staff face in supporting residents’ self-determination and their own need for greater organisational support.
Social, psychological and neuropsychological research supports that those with mild or moderate dementia can participate in decision-making pertaining to many matters pertinent to their health, wellbeing and lifestyle (Grisso & Appelbaum, 1998; Karel et al., 2007; Miller et al., 2016; Moberg & Rick, 2008). Many people with dementia report wanting to remain involved in making decisions that affect their lives (Daly et al., 2018; Hirschman et al., 2005). Such involvement has been found to provide the person with a sense of self-worth, better quality of life and an improved sense of identity (Baldwin, 2009; Fetherstonhaugh et al., 2013; Whitlach & Menne, 2009). These are concerns central to the increasingly influential person-centred approach to care in aged care (Kim & Park, 2017; Kitwood, 1997). Nonetheless, people with dementia – including those living in residential aged care facilities (RACFs) – are often prevented from participating in decision-making to an extent that is inconsistent with their rights or interests (Davey & Clarke, 2004; O’Connor & Purves, 2009; Tyrrell et al., 2006). This article adds to our understanding of this issue by considering the perspectives of care staff at RACFs in Victoria and Queensland, Australia on supporting decision-making for residents with dementia and their responses to two hypothetical resident scenarios.
Article 12 of The United Nations (2006) Convention on the Rights of Persons with Disabilities, to which Australia is a signatory, states that individuals should be presumed able to make their own decisions. Legislation has recently been enacted in several jurisdictions including within the United Kingdom, Israel, Sweden, the United States and Canada that is consistent with this article (Davies et al., 2017; Devi et al., 2011; James & Watts, 2014; Martin et al., 2016). Whilst Australia has not enacted any legislation, the Australian Law Reform Commission has developed four principles to inform relevant legislative reviews. Principles 1 and 3 state that ‘all adults have an equal right to make decisions that affect their lives and to have those decisions respected’, and ‘the will, preferences and rights of persons who may require decision-making support must direct decisions that affect their lives’ (Australian Law Reform Commission, 2014, p. 11).
The Australian National Framework for Action on Dementia 2015–2019 (Australian Health Ministry Advisory Council, 2015) also identifies as an action priority that ‘care and support services’ support those with dementia to ‘exercise choice and decision-making’ (p. 13). The Aged Care standards (Department of Health, 2018) recently introduced by the Aged Care Quality Agency state that consumers should be ‘supported to exercise choice and independence’ with respect to the maintenance of relationships of choice (p. 6).
Translation of this policy imperative at the direct practice level, however, is challenging. It requires that care staff not only have a clear sense of how to gauge the ability of individuals to make their own decisions, but also how to ascertain those matters in relation to which it is appropriate for residents to be self-determining (Mariani et al., 2017). Recent research, however, has found that RACFs in Australia lack robust policy on supporting residents to make their own decisions and on supporting others to make decisions on their behalf (surrogate decision-making). Sinclair et al. (2019) found that the policies and procedures of organisations lacked clarity around capacity assessment, staff responsibilities vis-à-vis decision-making and actions that are required to support residents to make decisions.
A number of problems may arise where staff are provided insufficient guidance on supporting the decision-making of residents and the making of decisions on their behalf. Some of these problems relate to the inherent difficulty of establishing when individuals with dementia possess the skills required for decision-making (Hegde & Ellajosyula, 2016). As Pennington et al. (2012) state, no instrument is sufficiently flexible to consider all the factors relevant to such an assessment. Whilst little is known about the grounds on which individual care staff assess residents as capable of making their own decisions, there is evidence to suggest they often rely on inexact information (Davey & Clarke, 2004; Smebye et al., 2012).
Problems may also arise when the beliefs of staff about what constitutes the best course of action for a resident are based upon mere assumptions about residents’ values. Karel et al. (2007) found that the values of residents in nursing homes vary considerably as a reflection of their religious beliefs, socioeconomic status, personality and life experience. Also relevant is that Whitlach and Menne (2009) found caregivers’ perceptions of the preferences of those with dementia become less accurate over time. Oosterveld-Vlug et al. (2013) found in their research with personnel from four nursing homes that the values of staff or, in particular, their personal perception of dignity, led them to take actions that were contrary to residents’ wishes. Moore (2017), in a study on how nursing home staff’s values influence their approach to care, found that some held values that were in conflict with their caring role and made them more inclined to disregard residents’ preferences.
A review of the international research on the involvement of those with dementia in decision-making in relation to care services – including moves to residential care – found evidence of families’ preferences being prioritised over those of the relevant individuals. Bauer et al., 2014 found that the relationship between staff and residents’ families often becomes adversarial and Hughes et al. (2002) found that staff and families often hold conflicting views on what is in the best interest of the person with dementia.
When those working with dementia lack guidance around decision-making, the rights and quality of life of residents can be impacted. Moyle et al. (2011), for example, found that when staff in acute care did not possess sufficient knowledge of dementia, they prioritised patient safety above offering patients the dignity of choice. McDonald (2010) found, in research on the decision-making of staff working with individuals with dementia after the introduction of the Mental Capacity Act in the UK, that whether they offered choice to clients with dementia was heavily mediated by their own personal values. Others have found that staff can too readily default to the preferences of individuals’ family members (Cogen et al., 1992; Lopez & Guarino, 2011; Petriwskyj et al., 2012; Taghizadeh Larsson & Österholm, 2014).
The research aimed to explore how care staff perceive decision-making for people with dementia and respond to case scenarios requiring them to indicate decisions they would make.
Methodology
In the broader study, an aspect of which is reported on here, care staff from RACFs in Victoria and Queensland, Australia were interviewed about decision-making processes they employ when working with residents with dementia (Fetherstonhaugh et al., 2016). The current article focuses on participants’ views of the ability of people with dementia to make decisions and their responses to two resident scenarios. With respect to these scenarios, participants were asked to comment on how they would respond were they to encounter them in real life. Data collection and analysis drew on grounded theory. The study gained approval through the Human Ethics Committee at La Trobe University (approval number FHEC 11-148).
Design
The qualitative exploratory design of this study was informed by grounded theory; an approach in which researchers come to their subject matter with few preconceived notions. It is a useful method for exploring the ‘the world as it is experienced by the individual’ (Hallberg, 2006 p. 141). Whilst the scenarios were presented to the participants as a consistently worded script, discussions with participants about how they would respond and the issues these scenarios raised for them were in-depth and flexible. Following transcription, the data were aggregated according to the orientation of participants’ responses and the consistency of participants’ responses across the relevant questions (Charmaz, 2000; Glaser, 1978).
Participants and data collection
All participants in the study were staff who provided direct care to people with dementia in RACFs in either Queensland or Victoria. The cohort mostly included nurses and personal care assistants (see Table 1). Participants were recruited through a range of means including through advertisements placed in industry publications, e-bulletins and making direct contact with RACFs.
Roles of research participants.
aAn enrolled nurse in Australia has obtained either a Diploma of Nursing or a Certificate IV in Nursing from a tertiary institution or other registered training provider; the equivalent of an LPN (Licensed Practising Nurse) in the USA.
Data were obtained through individual or group interviews at 14 RACFs. Participants were provided the choice of attending an individual or group interview with the rationale that offering such flexibility would lead to a higher number of individuals taking part. Recent research supports that individual and group interviews yield data of comparable quality and breadth (Guest et al., 2017). Interviews were semi-structured to allow both for comparable data to be collected between one interview and the next and for participants to elaborate on crucial topics. Neither type of interview nor place of work was predictive of interviewees’ responses to the case scenarios or, in particular, likelihood of supporting autonomy for the hypothetical residents.
Data were collected in eight group interviews (comprising between 2 and 11 participants) and 41 individual interviews. Face-to-face interviews were conducted at participants’ workplaces during work hours at a time convenient to the participants. Four individual interviews took place over the phone. All interviews were, with participants’ permission, audio-recorded. The duration of group interviews was between 35 min and 1.5 h and individual interviews between 15 and 45 min.
Participants were invited to respond to questions relating to whether individuals with dementia can make decisions; what kinds of decisions they are able to make, and how they determine both the ability of residents with dementia to make their own decisions and the kinds of decisions they can make. They were additionally asked how they make decisions on residents’ behalf, the results of which have been published elsewhere. Participants were also presented with two hypothetical scenarios and asked to state what course of action they would take in relation to each and discuss anything else these scenarios brought up for them. In one scenario, participants were asked whether they believed it would be appropriate to allow a resident with dementia to keep smoking despite a recent diagnosis of chronic obstructive airways disease (COPD) and the doctor’s recommendation that he cease. In the other scenario participants were required to decide the appropriateness of two residents with dementia pursuing a sexual relationship despite one having a serious heart condition and the other at risk of spontaneous fractures (osteoporotic vulnerability). These scenarios present, alternately, moderate and extreme risks of likelihood of harm or injury (as measured against the Risk Management Plan for Aged and Community Care, Aged and Community Services Association of NSW & ACT, 2012). There was no mention of the severity of dementia experienced by the residents in the scenarios thus providing room for participants to comment on the relevance of the degree of dementia.
Data analysis
Interviews were transcribed. The software package NVivo was used to facilitate the management and aggregation of data according to thematic content. This article focuses on data on participants’ views regarding the ability of residents with dementia to make decisions for themselves and how they would respond to the scenarios. In the case of responses to the scenarios, data were aggregated according to the orientation of their responses and whether participants had offered congruent or incongruent responses across the central questions.
Findings
Data analysis found that participants at RACFs held varied perspectives on why being able to make decisions is important for individuals with dementia and whether residents with dementia should be able to make a narrow, or broad range of decisions. The main findings are that participants varied in the rationale they offered for supporting residents’ wishes and the extent to which their rationale were consistent across scenarios or with their general beliefs about residents’ decision-making abilities. Where some participants were consistently supportive, whether responding to the broader question of residents’ decision-making abilities or to the scenarios, of residents being self-determining, others were generally unsupportive. Most participants, however, demonstrated a measure of inconsistency in their positions.
Beliefs regarding residents making their own decisions
Participants were asked whether they believed residents with dementia can make decisions about issues affecting them. Whilst a majority answered in the affirmative, many qualified this response by stating that residents can only make decisions on matters associated with low risk such as what they want to eat or wear, when they want to wash and what scheduled activities they want to do. Others indicated that residents’ ability to make decisions is associated with the extent to which their dementia has progressed.
Reasons offered by participants for residents’ involvement in decision-making being important include that it is their right. One participant stated, ‘they’re a human being and [need] to be treated with respect’. Another emphasised that residential facilities are residents’ homes and that people should be allowed to make choices in their own homes. Others claimed that being involved in decision-making helped residents maintain a positive sense of themselves and gave them opportunity to demonstrate their capabilities. One participant stated that residents being involved in decision-making ‘projects an image to those around them that they still retain a certain amount of independence’. Other participants claimed that residents should be involved because it was a source of positive affect, making residents ‘happy’ or gives them ‘something to look forward to’. A couple of participants mentioned that involving residents in making decisions provided them, as staff, an increased feeling of control by improving the chance of residents complying with their requests.
Policy related to decision-making
A few participants claimed they knew their facilities’ policy was to involve residents in making decisions where it was safe or practical to do so. Most participants, however, demonstrated scant familiarity with policy developed by the care facilities they worked for, or expressed doubt that there was any relevant policy. In a typical response, one participant claimed their employer was likely to have something on decision-making in their service manual ‘with all our hospital policies and procedures’ but was unsure of the relevant contents. A couple of participants expressed ambivalence about their organisations’ policies or the utility thereof. One claimed that the policies were often ‘ridiculous’ or too ‘politically correct’, where another implied that the extent to which policies were able to be applied depended on the resident one was working with.
Position on supporting the wishes of the residents in the hypothetical scenarios
There was inconsistency in some cases between participants’ responses to scenarios and the opinions they had expressed on residents being able to make decisions.
Participants who were consistently supportive or consistently unsupportive
Those participants who were consistent in indicating support for residents being more self-determining had offered responses such as ‘absolutely’ as to whether residents can make decisions. They also indicated that residents in both scenarios had the ‘right’ to engage in activities of their choice.
Only a couple of participants had provided responses to the effect that individuals with dementia are unable to, or should be discouraged from, making any decisions. These participants were also of the opinion that they would intervene in both scenarios, i.e. to stop the residents from smoking or having sexual contact.
A small group of respondents were consistent in suggesting that the extent to which residents should participate in decision-making or be self-determining would depend on the stage to which the dementia has progressed. That is, in responding to the scenarios, they tended to enquire about the residents’ cognitive status.
Participants providing inconsistent responses vis-à-vis resident autonomy
The majority of respondents demonstrated conflicting ideas about how self-determining residents should be. One participant who had stated that residents should be able to decide on matters of importance to them, claimed she would intervene in the situations presented in the case scenarios. A small number of participants who had claimed that the level of autonomous choice residents are offered would depend on how far their dementia had progressed gave definitive responses to the scenarios even though no information had been offered on the severity of the dementia.
A large number of participants were self-contradictory in the opposite direction. That is, whilst they had indicated that residents with dementia should only make decisions on matters that have little consequence for their safety, they were also inclined to support residents in one or both scenarios (both of which, as discussed above, posed moderate or extreme risks of harm).
Reasons offered by participants for wanting to support, or restrict vis-à-vis the scenarios
The rationale that participants offered for their views on the scenarios related, in most cases, to notions about residents’ rights, concerns about risk, or their own personal values. Few participants referred to how organisational policy required them to act, with no participants at all referring to broader policy discourse on self-determination and dementia.
Several participants, including most of those in the ‘consistently supportive’ sub-group, gave responses that pertained to residents’ rights. One participant stated, regarding the smoking scenario, that ‘it’s reasonable to guess that he would know that [smoking] is affecting him’ and that staff have no right to stop him. Similarly, a different participant commented, in relation to the sexual contact scenario that ‘you can’t take that right away from them’ adding that it was staff’s job to make sure ‘the environment is safe and constantly checked’.
Other participants justified their stance from the perspective of safety. Participants in the consistently restrictive sub-group, for example, claimed that, in the smoking scenario, they would take the resident’s cigarettes from him, either because it is what the doctor has prescribed, or because it was their responsibility to prevent the resident from becoming ill. These participants also described the sexual contact scenario as presenting too much risk for the residents.
For other participants it was their own value systems and beliefs that guided how they responded to the case scenarios. One participant stated that she would not be able to allow the subjects in the sexual contact scenario to continue their relationship because of her ‘religious beliefs and … views about sex within marriage and that sort of thing’. Another participant indicated that residents’ preferences should be supported or discouraged in line with community standards. They believed that the couple in the intimate contact scenario should be separated if committing infidelity because community expectations are that ‘people are faithful to their life partner’.
Particular participants demonstrated inconsistent reasoning across the two case scenarios. One participant, for example, claimed that the subject in the smoking scenario should be allowed to continue smoking on the basis that ‘you can’t take every pleasure off them’. That is, the participant justified their support of the person’s choice on the basis that it provided them gratification. When confronted with the sexual contact scenario, however, they were influenced by moral considerations, stating that their personal values would direct them to ‘kind of step in a bit with things like that’. Another participant would have prevented the relationship in the intimate contact situation on the grounds that ‘it’s a little bit dangerous’. The same individual, however, stated vis-à-vis the smoking scenario that the subject ‘can still make that decision’ if ‘that’s what he’s happy doing’.
Responses provided by some participants to the scenarios indicated they were conflicted about how much autonomous choice residents should be given, or what levels of risk they should be allowed to engage in. Where one participant would not have wanted to directly intervene in the intimate contact scenario, they would nonetheless have sought to influence the subjects to make an alternate decision by distracting them. The participant claimed they wouldn’t go and make a song and a dance, and a show but if I can say … “There’s music on down in the floral room and we know you love to sing and dance. Did you wanna come and look at that?” And if it’s gonna just distract and confuse the situation a bit
Discussion
Recent research has led to an improved understanding of the ability of individuals with dementia to participate in decision-making as well as the personal significance to individuals of being involved in such (Groen-van de Ven et al., 2017). Consistent with this, contemporary government policy impels services who provide care for those with dementia to support their service users to participate in making decisions on matters directly concerning them (Mental Health Foundation, 2015). The findings from this study highlight the challenges associated with operationalising this policy at the direct care level.
The study found that RACF staff hold a diversity of views regarding the basis on which residents should be supported to be self-determining and the decisions they are able to make. Participants also lacked certainty regarding which courses of action and levels, or types, of risk are appropriate for residents to take. Consequently, staff reported relying on diverse and often inconsistent rationale in deciding which of residents’ preferences to support or facilitate. It is argued here that this carries with it the central risks that, across time, residents will be given reduced opportunity to participate in decision-making and inconsistent or inadequate standards of care or protection.
The varied views and uncertainty expressed by many participants may be explained, at least in part, by inadequate agency policy. Few participants could recall in any detail policies that had been developed by their services in relation to decision-making and residents with dementia. Where this may indicate that staff are not familiar with agency policy, it may also, consistent with the findings of Sinclair et al. (2019), suggest a failure by RACFs to develop appropriately elaborated policy.
The findings suggest that a large number of staff working in RACFs believe in the capacity of residents with dementia to make their own decisions and the importance of their doing so. Whilst a handful of participants declared, without qualification, that residents should be able to make decisions, others stated that the extent of their participation should reflect the stage to which their dementia had progressed. Others suggested that residents can only make decisions on matters where the consequences carry very little risk or that they cannot generally make decisions. This diversity in responses suggests that, across a single organisation, staff may be providing residents with variable and inconsistent opportunities to participate in decision-making.
Participants also offered diverse rationales for their position that residents should be involved in decision-making. This is to say that participants’ responses were not uniformly consistent with policy discourse which conceptualises such involvement as, first and foremost, a fundamental right of residents. Participants justified the involvement of residents in decision-making from other perspectives such as that it increases their level of positive affect, provides them with improved self-identity, or that they may be more compliant. This leaves open the possibility of staff not involving residents where they believe these benefits will not be incurred.
The findings also suggest that, in the absence of relevant direction, staff will often decide whether to support residents engaging in a particular activity based on their personal feelings about it or their broader values. Although the smoking and intimate contact scenarios presented comparable levels of risk for the hypothetical residents, several participants would have supported residents in one scenario but not the other. Some participants made it especially clear in their responses to the intimate contact scenario that they would have intervened had it involved one or the other party committing infidelity due to their own beliefs about the importance of faithfulness in a relationship.
Responses from other participants indicated that staff could be uncertain whether they should decide which of residents’ actions to support because of their own values or concern for residents’ autonomy. This was seen in the case of the participant who would neither stop a resident from smoking nor help them, and the other who wouldn’t physically break up residents engaged in an intimate relationship but would try and distract them. Only a few participants were emphatic that the personal morality of staff shouldn’t govern what they supported residents to do. This finding echoes that of Moberg and Rick (2008) that many clinicians are overly influenced by their own beliefs and values in deciding whether a client can make their own decisions.
Responses from other participants suggest another reason for clear policy guidance is that staff are sometimes not even aware of the criteria that they are really using in deciding whether to support residents’ decisions. Some staff who argued they would have prevented residents’ actions in one case scenario on the basis of danger posed to the person/s, had no such concerns in relation to the other. This is despite each scenario representing a comparable level of risk for the subjects. This indicates that even where staff believe they are deciding on the basis of one set of criteria, they may be being persuaded by other considerations.
There is another question here about the extent to which estimates of risk may be mediated by personal values. One participant who suggested earlier in their interview that residents shouldn’t stand on precarious objects such as a chair if trying to reach something, showed support for the couple in the intimate contact scenario. It is possible that, in this instance, they felt that the potential benefits of engaging in a close relationship outweighed the associated risks. It may instead have been the case that their emotional response to the scenario reduced their ability to perceive the risk.
The findings of this research provide good argument, additional to a previous manuscript by the authors dealing with organisational barriers to supporting the decision-making of residents with dementia, for developing robust organisational policy (Tarzia et al., 2015). The caution by Low et al. (2015) that no staff interventions are guaranteed to improve outcomes for residents, can be balanced against the finding from Wagner et al. (2001) that additional training and use of guidelines are useful for reducing the uncertainty of care staff in nursing homes.
Researchers from the Australian Cognitive Decline Partnership Centre have developed recommendations for supporting decision-making by aged care providers that are endorsed here. Key actions identified include development of high-level policy documents that outline organisations’ approaches to decision-making and a decision-making tool that helps staff establish residents’ will and preference so as to inform decision-making ‘within a broader rights paradigm’ (Sinclair et al., 2018, p. 11). Staff also require guidance with regard to supporting the sexual needs of residents. Although sexual expression is a human right, Bauer et al., 2016 found that many aged care facilities fail to recognise or address it as an aspect of wellbeing. Wilkins (2015) argues that a nuanced approach to the issue is required that balances residents’ needs with protection from harm.
Also important is that RACFs can establish a shared decision-making culture which, itself, is dependent on a ‘person-centred culture of care’ (Ervin et al., 2017). Shared decision-making can be described as joint decision-making between residents and staff where the ‘values, goals and concerns’ of individuals are integrated with the ‘best available evidence about benefits, risks and uncertainties’ (Ervin et al., 2017, p. 815). This approach to decision-making allows residents with dementia to not only be heard, but to be appreciated as individuals who are able to both give and receive (Vernooij-Dassen et al., 2011).
This research project has demonstrated that residential aged care staff need much better support around decision-making for residents with dementia. Without such guidance they are left with an additional and often confusing burden of having to decide from one instance or scenario to the next about which preferences of residents they should support and the grounds for doing so. Carney (2015) states, ‘The concept of agency of course lies at the heart of respect for personhood and civil rights.’ The safety and autonomy of residents of residential aged care who have dementia are dependent on the staff of such facilities having clear sense of both the importance of residents having an appropriate level of independence and which risks are appropriate for them to take. It is only where there is agreement about which activities should and shouldn’t be allowed, that the appropriate supports will be put in place.
Limitations of this research
The main limitation of this project is that the relatively small number of participants and that random sampling was not adopted means the data cannot be taken as representative of staff in RACFs. Another limitation may be that the scenarios were relatively brief and did not provide comprehensive context and description. In the ‘ideal real world’ it would be RACF staff confronted with these scenarios would know the residents and their situations well.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Dementia Collaborative Research Centre: Carers and Consumers as part of the Australian Government’s Dementia Initiative. The views in this work are the views of its authors and not necessarily those of the Australian Government.
