Background and introduction
Timely and effective discharge planning can provide continuity in the care of older adults, improve the transition from hospital for both older adults and their families, and reduce hospital re-admissions and associated personal and financial costs (Bull and Kane Reference Bull and Kane1996; Bull and Roberts Reference Bull and Roberts2001). Discharge planning for older adults leaving inpatient care can be particularly challenging when patient, family and professional expectations conflict (Durocher and Gibson Reference Durocher and Gibson2010; Swidler, Seastrum and Shelton Reference Swidler, Seastrum and Shelton2007; Wells Reference Wells1997). Participants in the discharge-planning process might hold differing expectations stemming from personal values and experiences that have been influenced by context-specific social and political discourses. Competing wishes, expectations and responsibilities lead to ethical questions about whose interests should drive discharge planning.
Research in the area of discharge planning suggests that collaboration between patients, families and interdisciplinary health-care teams facilitates effective discharge-planning processes (Bull and Roberts Reference Bull and Roberts2001), however, research also suggests patient and family involvement is highly variable within and across different countries. Although two survey studies in the United States of America (USA) found that older adults reported being involved in discharge-planning processes (Abramson Reference Abramson1988; Brown Reference Brown1995), eight studies using various methodologies from different countries (Canada, England, Norway, Scotland and the USA) reported little to no older adult and family member involvement in discharge planning (Atwal Reference Atwal2002; Clemens Reference Clemens1995; Foss and Hofoss Reference Foss and Hofoss2011; Huby et al. Reference Huby, Steward, Tierney and Rogers2004, Reference Huby, Holt Brook, Thompson and Tierney2007; LeClerc et al. Reference LeClerc, Wells, Craig and Wilson2002; Pethybridge Reference Pethybridge2004; Swinkels and Mitchell Reference Swinkels and Mitchell2008; Wells Reference Wells1997). In Wells’ (Reference Wells1997) study, older adults reported that they had insufficient information to contribute to discharge decision making, and that discharge decisions were happening in inter-professional team rounds or informal professional communications that precluded their involvement. Work by Efraimson et al. (Reference Efraimsson, Sandman, Hydén and Rasmussen2006), Opie (Reference Opie1998) and Huby et al. (Reference Huby, Steward, Tierney and Rogers2004, Reference Huby, Holt Brook, Thompson and Tierney2007) supports Wells' findings. These authors concluded that structured conventions (such as ingrained communication practices and habits) largely excluded patient and professional interactions, and combined with an emphasis on minimising risks, limited older adult and family participation in discharge planning.
There is little research examining discursive or other structural mediators, such as values, expectations, roles and protocols that shape discharge-planning perspectives, behaviours and practices. Moreover, research examining how clinical policies, practice guidelines and institutional processes contribute to conflicts and their outcomes in discharge planning is scarce (for exceptions, see Connolly et al. Reference Connolly, Grimshaw, Dodd, Cawthorne, Hulme, Everitt, Tierney and Deaton2009; Dill Reference Dill1995; Huby et al. Reference Huby, Holt Brook, Thompson and Tierney2007; Wells Reference Wells1997). Finally, to our knowledge only one study (Pearson et al. Reference Pearson, Procter, Wilcockson and Allgar2004) examined discharge planning from older adults', family members' and health-care professionals' perspectives. This study, however, focused on identifying risks for unsuccessful discharge rather than the process and factors influencing discharge decisions. Using the microethnographic case study method, our study analysed the perspectives of sets of older adults, family members and health-care professionals regarding their experiences of planning for discharge from an inpatient rehabilitation centre in an urban centre in Canada. The aim was to identify how social and political factors surrounding the discharge processes across cases shaped discharge-planning processes as well as the perspectives and experiences of individuals involved in this process, and subsequently older adults' agency in discharge-planning decision making.
Research purposes
The research purposes were to explore discharge planning from the perspectives of older adults, family members and health-care professionals; to examine social and political influences affecting perspectives and practices associated with discharge planning with older adults; and to explore how older adults' agency may be mediated in discharge-planning decision making by social and political influences.
Research design and methods
To undertake our exploration of how autonomy is experienced and might be influenced, we used a critical bioethics approach (Hedgecoe Reference Hedgecoe2004; Twine Reference Twine, Scully, Baldwin-Ragaven and Fitzpatrick2010) informed by concepts of relational autonomy (MacKenzie and Stoljar Reference Mackenzie, Stoljar, Mackenzie and Stoljar2000; Sherwin Reference Sherwin and Sherwin1998). We sought to explore critically how individual perspectives towards, and behaviours in, discharge planning were affected by underlying social and political attributes. Critical approaches examine the hidden forces that might be created and reproduced by social and political structures and practices, as well as by systems of thought underlying these (Eakin et al. Reference Eakin, Robertson, Poland, Coburn and Edwards1996; Harvey Reference Harvey2013). Critical bioethical approaches seek to examine ethical issues in the provision of health care in relation to social and political structures, practices and processes. Such approaches are reflexive and empirical and apply an ethical framework to research in order to generate findings that are applicable to, and informed by, clinical practice (Hedgecoe Reference Hedgecoe2004; Twine Reference Twine, Scully, Baldwin-Ragaven and Fitzpatrick2010). Feminist perspectives are also concerned with the intersection of social and political structures, beliefs, practices and norms (Sherwin Reference Sherwin and Sherwin1998) and as such align with critical bioethics approaches. Feminist theories of relational autonomy complement critical perspectives in framing individuals as socially situated and inextricably embedded in their multi-layered contexts and webs of power relations (MacKenzie and Stoljar Reference Mackenzie, Stoljar, Mackenzie and Stoljar2000; Sherwin Reference Sherwin and Sherwin1998; Sherwin and Winsby Reference Sherwin and Winsby2010). Sherwin (Reference Sherwin and Sherwin1998), a seminal theorist in the area of relational autonomy, specifies that all relationships are subject to political values and forces as all relationships occur within the broader political context. From this perspective, individuals' values, capacities, perspectives and expectations are shaped by the systems of norms, and opportunities embedded in their geo-temporal social and political contexts. We employed a critical bioethics approach informed by relational autonomy theory to examine individual experiences and perspectives in the process of discharge planning in order to illuminate hidden and potentially oppressive structural influences in discharge planning for older adults.
We employed a microethnographic case study design (Willis Reference Willis2007: 242). Case studies are heuristic, naturalistic and particularistic in enabling a focus on a particular object of study, and in examining real people and situations within authentic and defined environments and contexts (Willis Reference Willis2007; Yin Reference Yin2003). One of any number of phenomena could constitute an object of study including but not limited to an event, a process, an individual or social group, a programme or an institution (Merriam Reference Merriam1998). Additionally, case study methods allow for the collection of rich descriptive data from different sources in the setting where the process of study is taking place (Willis Reference Willis2007). In keeping with a critical bioethics perspective and relational autonomy theory, we employed a microethnographic case study methodology (Willis Reference Willis2007: 242), which is a type of ethnographic case study (Merriam Reference Merriam1998; Willis Reference Willis2007). Ethnographic case study methodology emphasises the context in which the phenomenon of study takes place (Merriam Reference Merriam1998; Willis Reference Willis2007). While ethnographic case studies examine broader social groups and communities, microethnographic case studies focus on smaller units of study such as a few individuals within an institutional context, for example (Willis Reference Willis2007). The use of microethnographic case studies enabled a focus on processes, such as decision making, by guiding an examination of the perspectives and experiences of individuals within the social and political context of each case. Moreover, this approach enables the observation of individual behaviours and the generation of data to examine how context-specific practices, valued approaches and prevailing discourses shape the experiences and outcomes of particular processes (Merriam Reference Merriam1998; Willis Reference Willis2007).
The study was set in a large urban teaching hospital geared towards the provision of health-care services for older adults in southern Ontario, Canada. This facility had just over 30 inpatient rehabilitation beds and the anticipated length of stay was four weeks. Each case study included an older adult facing discharge from the inpatient rehabilitation unit, their family members and their health-care providers. We aimed for an even gender distribution and although we wished to have diversity in the sample, given the small sample size and that socio-economic, religious and ethnic characteristics were not the primary focus of the study, individuals were not selected or excluded based on these. Potential older adult participants were identified in collaboration with health-care professionals on a short-term rehabilitation unit for older adults (age ⩾65). We included all older adults who met the inclusion criteria within the first three months of the four-month data generation phase. Inclusion criteria were determined in alignment with our research purposes to examine (a) discharge-planning processes from several perspectives and (b) the agency of older adults throughout the discharge-planning process. Older adult participants were included if they were living on their own prior to the hospital admission, had one or more family members or informal care-givers involved in their care, had the capacity to consent to participate in the study and were able to communicate in English. It was also required that discharge back to their home was a potential option, but that the discharge location had not yet been decided. If older adults did not meet all of these criteria, they were not included. Family members involved in the older adults' care and health professionals involved in discharge planning were then invited to participate in the study. The final data set consisted of five case studies comprising 22 participant interviews including five older adults, seven family members and eight health-care professionals. The older adults included two men and three women; four lived alone prior to their rehabilitation stay and one lived with his wife. Only one of the older adults had been born in the urban setting, the others had moved here between 15 and 50 years prior to the study from European and South Asian countries. One of the family member participants was the wife of one older adult participant, was an older adult herself and lived with her husband. The other family members included two daughters, two sons and one son-in-law, all of whom lived 5–45 minutes away from their parent; two had been born in the same urban setting as the study and the others had been born prior to their parents' emigration to Canada. All eight health-care professionals were women (there were no men in these roles on this unit at that time) and included three occupational therapists, one physical therapist, two social workers, one manager and one head nurse. All had been working on this unit between one and 12 years (average of eight years and two months, with only one participant having been working on the unit less than two years). Two health-care professionals were interviewed in relation to two different cases. All participants provided informed written consent for participation in the study and publication of the research, with the exception of three older adults who wished to provide oral instead of written consent.
The data consisted of five ethnographic case studies, which enabled an in-depth exploration of the phenomenon of discharge planning. Data were generated through live observations of the discharge-planning family conference per case (ranging from 30 to 45 minutes each) followed by a total of 22 face-to-face semi-structured interviews (ranging from 10 to 60 minutes in length with an average of 32 minutes) with the older adult, family member and health-care professional participants for each of the five cases. This sequence provided real-time opportunities to observe various aspects of the discharge-planning processes, including institutional processes, conventions, communication practices, as well as assumptions and values, influenced participants' behaviours and interactions. The subsequent interviews provided the flexibility to probe further into the specifics of each case and explore more deeply what was observed during the family conference. Interview questions covered topics such as background information about the participant, their role and their understanding of this situation; what they felt was important to consider in this circumstance; what were the various discharge options from their perspective and why each was better or worse in their view; what was important in a home environment. Data collection and analysis were executed concurrently to allow for topics identified as relevant in the earlier case studies to be explored in subsequent interviews. Interviews with the two key informants (unit manager and head nurse) were conducted near the end of the final case study. Interviews were audiotaped and transcribed.
All data (transcripts and field notes) were analysed based on a modification of the process suggested by Dierckx de Casterle et al. (Reference Dierckx de Casterle, Gastmans, Bryon and Denier2012). We followed the suggested steps through close and multiple readings of the transcripts and writing of narrative reports for each case. The narrative reports were written based on an original set of descriptive questions. Examples of questions in the original include: Who are the individuals involved in this case study? What is their perspective on the ‘ideal’ discharge location and why? What is the decided discharge location? What was guiding the decision for this location? As case reports for subsequent cases were written, questions focused on key topics identified in the cases were added to the original sets. Such questions were based on insights gleaned in the preliminary analysis of early cases. These included questions such as: What power relations are at play? How are these visible? How do these intersect in the decision-making process? Once all of the case reports had been written and reviewed by the investigative team, each was revised to include re-analysis with respect to issues arising and insights derived from later case studies. We diverged from the steps suggested by Dierckx de Casterle et al. (Reference Dierckx de Casterle, Gastmans, Bryon and Denier2012) in the process of coding whereby instead of coding, we asked a second set of questions of the data, and then based on this analysis, asked a third set. Each set of questions was informed by the research questions, the relational autonomy framework and the ongoing analysis. For example, we analysed each case study to examine how the older adult's autonomy was being mediated by the other stakeholders. In particular, we examined the effects of tension between expressed wishes and recommendations and how individual or shared assumptions shaped individual behaviours or perspectives. Through our interrogation of the data with these sets of questions and our synthesis and reflection on the findings at each stage, we identified central themes.
Results of the analysis
The overarching research findings included the identification of co-constituting influences on participants' perspectives and behaviours in the process of discharge planning, which intersected to affect older adults' agency and participation in discharge planning. The themes of analysis included underlying beliefs, valued approaches and conventional practices (i.e. typical patterns of practice in the setting). We found that discourses of ‘ageing-as-decline’, beliefs privileging health-care professionals' expertise, approaches that prioritised safety over all other values and established conventions that guided the discharge-planning family conference served to marginalise the stated interests and values of older adult patients approaching discharge. Each of these findings is explained in detail below. We then discuss how the dynamic interrelationships of these discourses, beliefs and conventions reproduced and intersected to marginalise older adults in the discharge-planning process.
Underlying beliefs: inevitable decline with age and professional expertise
Through the analysis we identified two prominent underlying beliefs. The first was an assumption that ageing was necessarily linked to a decline in agency and decreased participation in decision making. The second was health-care professionals' confidence in the superiority of their knowledge and expertise. Each is discussed in turn.
Inevitable decline
The data revealed a common expectation among all participants that as older adults aged they would inevitably experience a loss of agency, retreating from active participation in decision making and relying on younger family members to assume a more prominent role in discharge decision making. Some participants believed that older adults willingly relinquished their agency, others expressed that it was taken from them, and still others suggested that the decline in autonomous decision making was an inevitable consequence of loss of physical and mental capacities. Some individuals from all three groups of participants linked the shift in decisional control to what they understood to be a natural decline in the older adults' cognitive and physical capacities.
Some of the older adult participants themselves demonstrated their underlying belief in declining decisional control as a ‘natural’ consequence of ageing in both their discussions and through their behaviours. Sophia, an older adult participant, spoke about who was making the decision for her discharge:
My daughter and my son. They say ‘you gonna be happy’ … And I got no choice to say no because they know better than me now, I can't do nothing without children now. Right? They take me shopping, take me to doctor … And I can't say nothing, just listen … I can't have nothing to say, just listen what they tell me, what to do.
Sophia's explicit resignation rests on her implicit belief that her children ‘knew better’ because they were younger and were therefore better qualified to obtain and or understand information to make decisions for her. Sophia had accepted ageing as being linked to decreased participation in decision making and others' diminished valuation of her opinion and wishes concerning the outcome of her discharge from the hospital.
The adult children within each of the five cases adhered to these assumptions about ageing, and further reinforced the corollary expectations that they were obliged to assume more decisional responsibility as their parents aged. Nancy, Sophia's daughter, readily took over discharge decision making with her brother, reporting that Sophia had given them decisional control: ‘She [Nancy's mother, Sophia] said, “You and your brother do what you want, you know, with the house, 'cause I don't want to think about nothing.” So she's reached that point.’ Contrary to Sophia's assertion that she had no choice but to rely on her children, in Nancy's view it was Sophia's choice to relinquish independence and decisional control. Nancy and her brother then largely took over decision making from Sophia. In saying ‘she's reached that point’, Nancy suggests that there is a generally understood expectation that there is a point when older adults will inevitably take a less active role in decision making. In her perspective and her actions, Nancy responded to this belief and to expectations that children should take a more active role in their parents' care.
Health-care professionals' comments in their interviews and the standard procedures on the unit particularly reflected beliefs that ‘this population’ needs assistance in decision making. Assumptions regarding inevitable decline were apparent in health-care professionals' comments regarding older adults' participation in discharge planning. Such assumptions are exemplified in one health-care professional's statement about the people involved in discharge planning. Julie (occupational therapist) stated:
It's very individual with regard to how much family involvement there is. If there isn't [any family], then obviously we're dealing directly with the patient and, if they're competent to make their own decisions and implement all the recommendations that we're making, then we deal mainly with the patient. But the family is, I mean, generally here in this population – it's an older population. Generally the family is very involved. We're meeting them.
Across the accounts, health-care professionals spoke about older adults' capacity to make decisions in ways that inferred that older adults' capacity was questionable, whereas they presumed that the decision-making capacity of others was acceptable, reinforcing putative links between ageing and cognitive decline. Participants from all three groups reflected an underlying expectation that as older adults aged, they would experience decreased agency and participate less, if at all, in decisions about their care.
Health-care professional expertise
The health-care professional participants privileged their own knowledge, expertise and authority when determining the best course of action in a given discharge situation. As Rebecca (occupational therapist) stated, ‘We meet as a team at rounds and discuss each patient, and that's really when we talk about discharge-planning formally, but we also talk about it informally all the time, amongst whoever the physio [physical therapist] and OT [occupational therapist] are.’ The health-care professionals justified their authority in discharge planning by suggesting that older adults and family members did not have the requisite knowledge or expertise, effectively delegitimising their values and perspectives in the decision-making process. For example, Alison (physical therapist) viewed older adults' roles in discharge planning as:
pretty much to participate in their therapy, in their assessments, bathroom, kitchen, to get stronger and see what equipment is safe for them at home. Patients generally here aren't as involved … More things are done for them, or to them, to help them. So I know in other facilities, let's say for a walker for example, you give them a list of vendors, say ‘choose a vendor and go get your own walker. Here's the list’. Here I say ‘I have a list of vendors, but I can help you order one, do you want to go through a vendor, and here's a list, a vendor of your choice, or would you like me to choose?’ [The older adult typically says] ‘You do it’ and we do it for them. So, in a lot of ways it's like a paediatric facility; you're working a lot with the care-giver around the client rather than directly with the client, depending on cognitive level.
In this quotation, the health-care professional describes making what she perceives to be relatively small decisions about purchasing equipment for the older adult, demonstrating how she privileges her own expertise over that of older adults or their family members who were not consulted. She likens older adults to children and seems to view them as passive recipients of care without agency and decision-making capacity for whom she must make decisions and co-ordinate care with family members.
The health-care professionals' underlying beliefs in the (superiority) primacy of their expertise, however, was not shared by older adults and their family members. The older adults in the study believed that health-care professionals were not significantly involved in their discharge-planning decision making compared to themselves and their children. When asked what were the health-care team's recommendations for her discharge, Sophia, an older adult said, ‘I don't ask. [They] only say “we gonna miss you.”’ Marion, another older adult responded to the same question saying, ‘Well, she [the occupational therapist] gave me a list. I don't go by that list.’ The older adults' children, similarly, did not attribute much value to the health-care professionals' recommendations. Older adults' children either used health-care professionals' recommendations to advance their own discharge plans for their parents, or they disregarded them.
Valued approaches: prioritisation of safety and ‘client-centred’ practice
In their interviews, the health-care professional participants actively presented themselves as adhering to the principles of what they called ‘client-centred’ care. In their accounts, client-centred care was described in terms of abiding by client wishes and allowing patients to determine their own best interests. Such commitments suggest that professionals aim to uphold older adults' autonomy; however, in all cases, client preferences were described as distinct from and subordinate to the first objective of maintaining client safety. For example, when describing how her practice is client-centred, one health-care professional participant (Rebecca, an occupational therapist) stated: ‘I advocate for what the patient wants as long as it's safe.’ Health-care professional participants suggested they were obliged to adhere to client preferences if and only if doing so was deemed to be ‘safe’.
In all five case studies, the older adults wished to live in the community with minimal assistance, and in four of the cases the older adults wished to return home. Health-care professionals, however, actively discouraged all five older adults from returning home without 24-hour care because of safety concerns. They consistently prioritised their duty to protect patients from potential harm over supporting patients' autonomous choices. Aside from health-care professionals' professed commitments to client-centredness, there was little evidence of their adherence to client-centred approaches in their discharge-planning activities, at least with respect to how such approaches are described in the literature (see Brookman et al. Reference Brookman, Jakob, DeCicco and Bender2011; Gerteis et al. Reference Gerteis, Edgeman-Levitan, Daley, Delbanco, Gerteis, Edgeman-Levitan, Daley and Delbanco1993; Law et al. Reference Law, Polatajko, Baptiste, Townsend and Townsend1997). Instead, health-care professional participants consistently prioritised the value of the older adults' safety throughout all their discussions of discharge planning. This is exemplified in Alison's (physical therapist) qualification that ‘a safe discharge for me is a good discharge’. Safety was further promoted by the unit manager, who, when asked about the team's priorities when making recommendations for discharge, stated: ‘I think safety is the main thing.’ In her interview, the manager indicated that as a leader, she was proud of her team for their promotion of safety, reinforcing its importance. By examining the data from the five case studies it seemed very clear that safety took precedence over upholding patient autonomy or the professed ‘client-centred approach’.
Conventions and practices: the discharge-planning family conference
The key event in the discharge-planning process was the family conference. On the rehabilitation unit, the family conference location, duration, agenda and seating plan operated according to established practice conventions. Attendees included the older adult, one or more involved family members or care-givers, and members of the health-care team. The conference was scheduled for 30 minutes and was held in one of the unit's dedicated meeting rooms. The room contained a table surrounded by chairs along with a second row of chairs along two walls. There was a computer in a corner on which the head nurse took meeting notes. Health-care professionals sat next to each other at the table opposite the older adult. At times family members also sat at the table, but most often they sat in the second row of chairs behind the older adult (despite encouragement from health-care professionals to sit at the table in unoccupied chairs). It was unclear why there was a separation between where the older adults and the family members sat. This might suggest that family members felt intimidated, or that it was an attempt to promote autonomous participation by the older adult.
In their interviews, health-care professionals described the family conference as a time to engage older adults and their families in discharge. Despite these stated views, the process of the family conferences followed a standard format that did not encourage older adults' contributions. The conventional process for family conferences began with introductions, after which the social worker read the list of patient goals to the older adult and his or her family. These goals were ostensibly set in collaboration with older adults, but reflected health-care professionals' instructions more so than older adults' aims. An example of such a goal and how it was presented by a social worker is taken from Maeve's family conference field note:
When you go home, you will need contact assist, so someone touching you [to provide stability], to walk with a walker – [then to the physical therapist] how many wheels does the walker have? [physical therapist indicates two] – [To Maeve] so with the two-wheeled walker like you've been using.
This goal used health-care professionals' language (contact assist) and was read to Maeve as if Maeve did not know herself what type of walker she was using (and had used to walk into the meeting room). It was stated to the patient in a manner that seemed more akin to an instruction than a goal, and that did not encourage collaboration or discussion. Following the goals, the meeting continued with health-care professionals reporting their assessment findings and sharing discharge recommendations. At the end of the meeting, if there was time, the health-care professionals answered the older adults' or family members' questions. In essence, through these didactic exchanges, families were expected to absorb the information provided by the health-care professionals and carry out their instructions.
In all but one of the family conferences, the reading of the goals was the only time where the conversation was consistently directed to the older adult. The exceptional case was that of an older gentleman Frederik and his wife Rita, both of whom were actively involved along with Rita's daughter in the discharge-planning discussion. In all other cases, when the professionals made their recommendations for discharge, they directed the conversation towards family members and the discussion proceeded between health-care professionals and family members. This was exemplified in the following field note from Maeve's family conference: ‘In the discharge-planning conference, the healthcare team had a tendency to talk about Maeve in the third person, a few times bringing Maeve into the conversation, but mostly talking about her even though she was right there.’ In a similar example, Sophia, the older adult in the family conference, appeared to be following the discussion but did not speak:
[Sophia] hardly spoke during the meeting. She seemed to be engaged in the discussion, looking at the speakers and smiling … She seemed to know very well what the meeting was about but she did not seem able to follow all the details of the discussion … Right before the end, Peter said to the team that he did not think his mother had understood all of this and he asked his mother in Polish if she'd understood. She said no.
To others, Sophia might have appeared to be participating by following social cues and looking at speakers while smiling, but her answer to her son's question revealed that she had not understood the discussion. Given that she was not understanding what was said, it is no wonder that she had difficulty contributing. The fact that no one was aware that she could not follow the conversation demonstrates a lack of effort to engage her and how the discussion occurred between health-care professionals and her family members.
Older adults and family members did not share health-care professionals' stated views that the family conference acted as a forum to collaborate in formulating a discharge plan. Some older adults and family members felt that the meeting helped by providing information, but that more information would be required at a later point in the rehabilitation stay. Others felt that the conference was not helpful at all, including Teja, an adult family member participant:
I found it completely unhelpful, almost patronising. And completely opposite to all my dealings with them so far. And I found it interesting from a group dynamic perspective – I had dealt with every one of them individually face to face during my visits or on the phone during many conversations. They were very different in the group environment … I had high hopes for this meeting. I thought it would be the most useful meeting, the best advice I could get for Dad, and it was so anticlimactic, it was so disappointing.
Teja's perspective reflects the particular roles assumed by the health-care professionals during the discharge-planning meeting and how these assumed roles impeded older adult and family members' contributions and collaborative decision making, thus inhibiting older adults' agency in the process. The structure of the family meeting dictated who spoke at designated times, how and when to convey specific types of information, and who could ask what types of questions and when. These roles and procedures did not invite the active engagement of older adults or their family members in discharge planning. Analysed in conjunction with the interview data regarding how discharge recommendations were formulated during the health professionals' rounds, it became apparent that the structure and process of the discharge-planning meeting ensured that the health-care professionals' discharge recommendations would be the final discharge decision. Variations in outcomes might relate to, for example, where, how or by whom the 24-hour care would be delivered. Beyond these important logistical details, the discharge decisions were made by professionals. Older adults and their families were expected to comply.
Discussion and implications
Discharge-planning processes and individual behaviours in this setting were influenced by dominant discourses prioritising safety and linking ageing to an expected loss of agency. Underlying beliefs about professional expertise and conventional practices directing the process of the family discharge-planning meeting strongly influenced discharge practices. All of these influences constrained older adults' agency in the discharge-planning decision-making process and led to discharge decisions that marginalised older adults' values and interests. The examples of Sophia and Julia's quotations above show how individual participants' behaviours and language reflected and reproduced their underlying beliefs that linked ageing to decreased agency in decision making. Health-care professional practices may have been guided by an organisational imperative to prioritise patient safety over clients' values. In combination with their belief in ageing as cognitive decline, their authority to determine a safe discharge plan that subordinated both their professed adherence to client-centredness and their patients' explicit preferences was legitimised. The conventions of the discharge-planning family conference further functioned to discourage older adult and family participation. These logics and practices coincided to marginalise the interests of the older adults and prevented them from autonomously participating in the determination of where and how they would live following discharge from the hospital.
Relational autonomy theory portrays individuals as indivisible from their social and political contexts and promotes consideration of how persons are influenced by structures, contextual opportunities and relationships (MacKenzie Reference Mackenzie2008; MacKenzie and Stoljar Reference Mackenzie, Stoljar, Mackenzie and Stoljar2000; Sherwin Reference Sherwin and Sherwin1998; Sherwin and Winsby Reference Sherwin and Winsby2010). Throughout the analysis of the data, our relational autonomy theoretical lens illuminated how individual and collective behaviours led to the marginalisation of older adults in the discharge-planning process. As we discuss below, the relational approach reveals how otherwise unrecognised influences that are embedded in the social context can be utilised to develop practices that uphold older adults' agency in making decisions, take into consideration individual abilities, needs and resources, and align with professional values of protecting physical safety.
Challenging beliefs equating ageing to an inevitable loss of agency
A prominent underlying belief reflected by all participants was that older adults experience a loss of agency, retreat from participation in activities and decision making, and thereby become more dependent. Huby et al. (Reference Huby, Steward, Tierney and Rogers2004, Reference Huby, Holt Brook, Thompson and Tierney2007) similarly found that older adults both expected to decrease their participation in decisions and left negotiations with their health-care professionals to younger members of their family.
Similar biases that link ageing to decreasing cognition and risks to safety have been discussed by Sherwin and Winsby (Reference Sherwin and Winsby2010), who highlight that older adults in clinical settings might be at particular risk of having their autonomy limited by a temporarily or permanently increased reliance on others, which might or might not be related to cognitive capacity, but which nonetheless heightens their vulnerability to a loss in agency. Sherwin and Winsby further argue that ‘there is often a significant gap between the ideal of independent, competent, fully informed, voluntary decision making and the actual conditions in which patients must choose, even when patients are living independently’ (2010: 184). The law also supports the presumption of capacity. For instance, in Ontario, Canada, where this study took place, there is consent legislation stating that a person is presumed capable unless there are reasonable grounds to believe otherwise (Ontario 1996: 4).
Older adults who are admitted to inpatient care services might not fit the ideal of the autonomous individual. Such situations, however, should not automatically lead to the suspension of the health-care professional's obligation to protect the patient's autonomy, or to lend disproportionate primacy to beneficence or paternalism in one's approach. In our study, paternalistic approaches aimed at protecting older adults' physical safety overshadowed considerations for other aspects of their wellbeing. Our findings support Sherwin and Winsby's arguments that circuitous and reinforcing interrelationships between discourses of ageing as decline and underlying beliefs about the primacy of health-care professionals' expertise result in the practice of prioritising safety.
Additional risks to older adults' autonomy include socio-cultural prejudices devaluing older adults in general and pervasive depictions that link ageing and declining cognitive abilities in contemporary society. The belief held among participants in this study that older adults would and should give up their agency is congruent with dominant social and political discourses of ageing as decline (Butler Reference Butler1989, Reference Butler2009), including disparaging images of older adults and the process of inevitable decline of bodily function and cognitive capabilities in newspapers, comics, novelty items (such as greeting cards and coffee mugs), advertising, news reporting, television shows and movies, stage productions and literary works (Gullette Reference Gullette1997; Nelson Reference Nelson2005; Twigg Reference Twigg2006). Whether or not their own perceptions align with or resist prevailing views, such discourses are a force in shaping the views of individuals of all ages and roles in society.
Although individuals might experience changes related to ageing, many of these changes are unique to the individual and should not be assumed as part of a common trajectory of ageing. Health-care professionals' assumptions about older adults as inevitably in decline have significant practice implications and are contrary to client-centred approaches. Client-centred approaches are consistent with relational autonomy (Ells, Hunt and Chambers-Evans Reference Ells, Hunt and Chambers-Evans2011) and in the case of discharge planning would direct health-care professionals to explore and include older adults' individual values, capabilities, strength and resources (Brookman et al. Reference Brookman, Jakob, DeCicco and Bender2011; Cott Reference Cott2004; Law et al. Reference Law, Polatajko, Baptiste, Townsend and Townsend1997).
In the broader context of rehabilitation education, advocacy and research, we suggest the need to explore contextual drivers of such beliefs and assumptions, as well as efforts to change faulty perceptions. One such existing project is the work of the National Institute for the Care of the Elderly (NICE) in Canada. In 2012, NICE aimed to tag one media representation of ageing on the internet per day to challenge individual assumptions and stereotypical depictions. Another example of such an endeavour is the establishment of intergenerational learning centres in which pre-school programme spaces are created in nursing homes or senior assisted living centres (Generations Early Learning and Family Centre 2015; Providence Health and Services 2015). While the establishment of such centres requires resources and the commitment of various organisations, smaller-scale efforts might include the involvement of older adults in the development and implementation of education programmes including elementary and high school programmes as well as health-care education programmes. These kinds of efforts work to change the disparaging dimensions of discourses of ageing by portraying and integrating the process of ageing into the lives and activities of younger individuals.
Challenging the prioritisation of safety
The overriding concern of the health-care professionals in our study with patient safety is consistent with other research from Canada (Moats and Doble Reference Moats and Doble2006), the USA (Crennan and MacCrae Reference Crennan and MacRae2010) and Australia (Denson, Winefield and Beilby Reference Denson, Winefield and Beilby2013). The maximisation of patient safety is also pervasive in health-care service delivery literature (i.e. National Steering Committee on Patient Safety 2002; World Health Organization (WHO) 2009) and in the mandates of professional organisations (i.e. American Occupational Therapy Association n.d.; Canadian Physiotherapy Association 2012; United Kingdom Royal College of Nursing n.d.).
By their own accounts, health-care professionals in our study privileged safety above all other aspects of health care and discharge planning at the expense of other considerations important to the older adults themselves. In all cases, the older adults wished to live independently with minimal assistance and, in four of the five cases, wanted to return to their homes. Health-care professionals' devalued the older adults' preferences because of their stronger commitment to protecting their safety. Conflicts between patients' agency and safety relate to the ‘dignity of risk’ (Nay Reference Nay2002; Parsons Reference Parsons2008). In her commentary, Nay (Reference Nay2002) suggests that health-care professionals' tendency to privilege patients' physical safety might be linked with hospital liability. Nay (Reference Nay2002) and Parsons (Reference Parsons2008) both argue that barring options that include physical risks not only denies individuals' autonomy, it can beget harm by discouraging hope and denying potential opportunities for growth. As an alternative that is more consistent with a relational view of autonomy, health-care providers and patients could engage in collaborative contracts to ‘manage risks’ (Kane and Levin Reference Kane and Levin1998). Like the process of informed consent, this process utilises collaboration to identify compromises rather than the abandonment of the older adults' wishes when in conflict with health-care providers' commitment to safety. This approach could support both older adults' preferences and professional values of protecting older adults' physical safety in keeping with their abilities, needs and resources. This approach also aligns with the principles outlined in models of client-centred care (Brookman et al. Reference Brookman, Jakob, DeCicco and Bender2011; Gerteis et al. Reference Gerteis, Edgeman-Levitan, Daley, Delbanco, Gerteis, Edgeman-Levitan, Daley and Delbanco1993; Law et al. Reference Law, Polatajko, Baptiste, Townsend and Townsend1997).
Older adults in our study were not permitted to act on their wishes to return home, as these were considered ‘risky’ choices that could lead to falls and other physical harms. The levels of risks permitted for older adults living at home, however, are not commensurate with the levels risk afforded to other populations in society. The WHO (2014) reports the incidence of falls at one per year for every three older adults over the age of 65. In Canada, hospital admissions rates for motor vehicle collisions are almost the same as those for unintentional falls (Canadian Institute of Health Information (CIHI) 2012a ), but every day millions of individuals use motor vehicles. Similarly, participation in winter sports such as hockey and skiing is strongly endorsed across Canada and other northern countries in spite of the high incidences of injuries and hospital admissions resulting from such activities (CIHI 2012b ). Consideration of the rates of injury in relation to the percentage of time engaged in the activity would suggest that winter sports and driving are much more dangerous than older adults living at home, yet while there are a number of initiatives to promote safety in these endeavours, individuals are not actively dissuaded from participating in downhill skiing or from driving automobiles in the same way that older adults in particular are prevented from returning home for reasons of risk. A study by Hinck (Reference Hinck2004) revealed that older adults living in rural communities strongly valued living at home and adapted their daily activities to match their capacities and enable themselves to remain at home. If the older adults had not required inpatient health care, they would be at liberty of continuing to live in their homes in what health-care professionals might call ‘risky’ situations. We suggest that older adults be afforded the same opportunity as other adult members of the community to choose to accept risks in their occupations, particularly in situations of discharge that have such a great influence on the qualitative value of their lives.
Challenging the conventions that structure the family conference
Family conferences are seen as a means of engaging older adults and family members in discharge planning (Efraimsson et al. Reference Efraimsson, Sandman, Hydén and Rasmussen2006; Griffith et al. Reference Griffith, Brosnan, Lacey, Keeling and Wilkinson2004). Despite this objective, the conventions guiding family conferences in our study setting discouraged patient and family contributions to the discharge-planning discussion. The meeting structure prioritised information provided by health-care professionals, signalling their authority and leaving little time for collaborative decision making. These results align with other studies (Efraimson et al. Reference Efraimsson, Sandman, Hydén and Rasmussen2006; Opie Reference Opie1998) of similar structures and roles in family conferences that ‘position the professional as more in control of the situation and discourages the development of the more dialogic talk’ (Opie Reference Opie1998: 196). In our study, communication practices tended to exclude older adults, exemplifying beliefs linking ageing to declining agency. During discharge-planning meetings, health-care professionals took on roles that privileged their expertise and authority and discouraged older adults' as well as families' involvement in the planning and decision-making discussion. This may have been exacerbated by the set-up of the meeting room, which was more akin to a legal process than a collaborative meeting.
Small but salient changes to physical and social structures of family conferences would encourage older adults and family member contributions. For example, the furniture could be rearranged to promote collaboration rather than opposition. Processes could be changed to elicit older adults' and family members' goals and expectations prior to stating health-care professionals' reports and recommendations. Our findings and recommendations for increased collaboration in discharge planning with older adults are consistent with those of Efraimsson et al. (Reference Efraimsson, Sandman, Hydén and Rasmussen2006), Foss and Hofoss (Reference Foss and Hofoss2011) and Opie (Reference Opie1998), and are aligned with the argument of Pearson et al. (Reference Pearson, Procter, Wilcockson and Allgar2004) for a shift in focus away from institutionally driven values towards older adults' needs and wellbeing. The relatively small changes in the social and physical structure of discharge-planning meetings have the potential to increase the participation of all participants in collaborative decision making (Brookman et al. Reference Brookman, Jakob, DeCicco and Bender2011; Gerteis et al. Reference Gerteis, Edgeman-Levitan, Daley, Delbanco, Gerteis, Edgeman-Levitan, Daley and Delbanco1993) and uphold the rightful autonomy of older adults in their life decisions.
Conclusion
In this research we have uncovered underlying beliefs among all participants that link expectations of inevitable decrease in agency to ageing and therefore guide practices that limited older adults' participation in decision making and increased their dependence on younger family members. Explicitly valued approaches prioritising health-care professionals' perceived expertise and guiding their behaviours and recommendations subordinated their professed adherence to a client-centred approach. Setting-specific conventions and practices influencing the discharge-planning family conference discouraged older adult and family member involvement. The intersection of these elements resulted in discharge-planning recommendations that prioritised safety and subordinated the rights, values and interests of older adults in decisions that had great bearing on the quality of their lives. Using a relational autonomy lens, we explored how the social, political and institutional structures in relation to participants' underlying beliefs privileged professional and institutional values and conventions over those of the older adults. Our study suggests that older adults' rightful autonomy could be maintained and agency in their own discharge planning promoted in consideration of professional concerns for protecting patient safety through relatively minor changes to the structure and processes of hospital discharge planning. The personal, social and economic implications resulting from the defence of older adults' autonomy in hospital discharge decision making is a matter for family and public debate.
Avenues for further research
This study contributes new knowledge about the provision of health-care services for older adults. The use of microethnographic case studies with multiple data sources in conjunction with a critical bioethics perspective and relational autonomy lens enabled an in-depth examination of the different influences on individual perspectives, choices and behaviours, and how these manifested in dynamics and interactions in discharge planning to shape outcomes.
As with many ethnographies, our study was limited to a single setting, in this case, to one urban hospital in Canada. Further research examining discharge-planning processes for older adults in a range of health-care institutions and jurisdictions is needed. Moreover, the study participants were generally from a higher socio-economic status and although we aimed to have diversity in gender and ethnicity of participants, the number of participants was too small for meaningful analysis. Research with a more diverse population would augment this work. A final note related to the setting is that the context of the study, a North American urban centre, is one in which discourses of individual autonomy have long prevailed. Other cultures, and potentially contexts, in less-developed countries may have differing approaches with respect to older adult care and decision making. Consideration of how older adults' autonomy is perceived and mediated in different contexts could further inform approaches taken in Western cultures. Further research is warranted.
Acknowledgements
We kindly thank the research participants for their willingness to share their stories with us. We are grateful to Dr Kathryn Morgan for her notable contributions to the development of this work. This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. The study was approved by the Research Ethics Boards of both the university and of the institution where the research was conducted. The authors take full responsibility for the work and conduct of the study presented in this paper. The primary and corresponding author was responsible for the conception and design of the research as well as the collection and analysis of the data; and the drafting of the manuscript and approval of the version to be published. The second and third authors provided substantial guidance in all phases of the research, contributed to the drafting and editing of the manuscript, and approved the version to be published. The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
