“She was a little bit unrealistic”: Choice in healthcare decision making for older people

doi:10.1016/j.jaging.2011.10.004

Journal of Aging Studies

Volume 26, Issue 2, April 2012, Pages 140-148

https://doi.org/10.1016/j.jaging.2011.10.004 Get rights and content

Abstract

This paper examines autonomy, choice, options, and power in healthcare decision making for older people. Using discourse analysis and a case study from data gathered as part of an ethnographic field study we critique a common conceptualization of healthcare decision making as patients choosing from an array of options offered by healthcare providers. A discourse of “giving options and being realistic” used by healthcare providers is contrasted with the experience of a single patient's transitional care from hospital to home after hip fracture. This illustrates how a wide variety of actors, institutions, values, and resources take precedence in determining a discharge destination. While the accounts given by healthcare providers cast patient choice in respectful terms, an ethnographic approach illustrates that the “choices” are structured by a discourse which simplifies the complexity of what is offered and who gets to choose. In the case study the patient's choice was subjugated by expertise and institutional concerns; her options were largely illusory; and her autonomy was “at risk” due to her age, poor health, and limited resources. We use Foucault's ideas about discourse and governmentality to question the scope of agency in healthcare decision making. We argue that the conceptualization of informed patients making autonomous choices acts as “misdirection” which deflects problem solving and discussion away from a productive examination of the differences between healthcare system offerings and client needs. We conclude by posing questions to reorient the debate surrounding healthcare decision making for older adults and recommend a more participatory approach to designing social services.

Highlights

► Foucauldian discourse analysis and governmentality to critique bioethics framing. ► Discourse of risk acts as ‘misdirection’ from critical conversation about needs. ► Rich empiricism of a case study questions options for relocating older adults. ► Includes dispersed power as a factor in healthcare decisions for older adults.

Section snippets

Introduction and background

This paper challenges a common framing of healthcare decision making — patients are presented with options from which to make informed choices (Ceci and Purkis, 2009, Kaufman, 1994, Murtagh and Hepworth, 2003). An underlying belief in the provision of patient choice obscures the complexity of healthcare decision making, especially for older people with complex health issues. Based on data from a Canadian ethnographic field study with older hip fracture patients, we examine the ways a focus on

Multi-site ethnographic field study

We present data and analysis drawn from a larger multi-site ethnographic field study focused on post operative hip fracture care transitions for older people in Canada. Specifically, information exchange between clients and HCPs were examined. Our approach was guided by common principles of ethnographic field studies including reflexivity, reciprocity (Hammersly & Atkinson, 2007), and multimodalities for data generation (Atkinson, 2008). A subset of the data generated in the multi-site

Discursive options and the construction of risk

Analysis of key informant interviews found evidence of a ‘metaphor’ described by Ceci and Purkis (2009) that HCPs use to make sense of discharge decision making — HCPs give options to grateful clients who then make choices. When clients resist they are ‘risky,’ but the HCPs have to respect their autonomy. While interviewing frontline HCPs we identified a similar explanation given when describing their typical involvement with clients, especially family members.

During key informant interviews,

Mrs. Smith's network

The first author met with Mrs. Smith at a unit in the acute site 16 days after surgery. Over the course of six months the first author ‘followed’ her through her care transitions. Mrs. Smith is an intensely private, intelligent, strong willed woman with a passion for books. She has a wry wit which underscored challenges in her journey. Mrs. Smith's HCPs demonstrated concern, diligence, and advocacy.

Mrs. Smith was in her early eighties when admitted to an urban hospital with a fractured hip. Post

Conclusion

Mrs. Smith's comparison between hospitalization and prison is a rhetorical device with which she reframes her status as a patient who lacks the agency to determine what is possible. Below she speaks to several themes discussed in the findings. At the end of her journey she perceives her patient role as: do what experts say because it's what she should do, (“then do what they say anyway …”); don't ask questions and passively wait to be informed of decisions, (“wait for them to tell you, ‘you can

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Finally, our research team organized the themes and visually mapped them into a conceptual framework of ToC domains (map and interpret), which is presented at the end of the Results section. Taken together, our framework analysis of the 12 manuscripts17,18,22–31 identified 8 themes related to ToC. Two themes, patient complexity and system constraints, are contextual factors that tend to impede ToC.
Improving care transitions is of critical importance for older patients, especially those with complex care needs. Our study examined the “Transitions of Care” (ToC) of complex, post-acute older adults at multiple time points. The objective of this article is to identify domains relevant to health care transitions of post-acute older patients with hip fracture so as to inform future ToC interventions.
Here we conducted a framework-based synthesis of the 12 peer-reviewed manuscripts that were published from our multisite, ethnographic study.
All 12 manuscripts were based on 1 study, described here. Data were collected in multiple regions, in acute and sub-acute care wards, rehabilitation programs, home care agencies, long-term care and assisted living facilities, and patients' private homes. We completed 51 interviews with 23 postoperative hip fracture patients aged ≥65 years, 24 interviews with 19 family caregivers, and 96 interviews with 92 health care providers. Interviews with patients, family caregivers, and health care providers were conducted at each transition point for a total of 171 individual interviews.
Taken together, our framework analysis of the 12 manuscripts identified 8 themes related to ToC. Two themes, patient complexity and system constraints, are contextual factors that tend to impede ToC and may be less amenable to change. The remaining 6 themes, patient involvement and choice, family caregiver roles, strong relationships, coordination of roles, documentation, and information sharing, have the potential to support and improve ToC.
With comprehensive data from a range of stakeholders, collected at multiple transition points along the health care continuum, in our final 6 themes we identify potential points of intervention for clinicians and teams seeking to improve ToC for older complex patients.
Pushing for miracles, pulling away from risk: An ethnographic analysis of the force dynamics at Senior Summer Camps in Sweden
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Research from various institutional settings targeting older people stress the difficulty in balancing power relations, decision-making and autonomy. Hicks, Sims-Gould, Byrne, Khan, and Stolee (2012) question the scope of agency in the process of healthcare decision making for older people, arguing that governing techniques, such as a dominance of expert knowledge when evaluating what care should be offered to whom, is hampering older people's decision-making. Harnett (2010), in her study about the interaction between residents and staff in a nursing home, found that the self-determination of the residents was negotiated.
With an ageing population and a discourse of active ageing guiding welfare policies, initiatives to engage older people in health promoting activities have been established. One growing phenomenon is Senior Summer Camps, arranged all over Sweden in beautiful natural environments close to water. Their main purpose is to enable older people to participate in outdoor activities in an institutionalized setting. Although many professionals consider acts of infantilization as highly inappropriate, research has shown that still this is frequently done in institutional settings targeting older people. This paper wish to contribute to this field of research. The objective is to study how the camp leaders handle the dilemma of on the one hand, wanting to push senior campers into participating in challenging activities, and on the other, needing to pull them away, to reduce risk and ensure their safety, as well as how senior campers experience alternately being pushed into and pulled away from activities. What strategies are used by the camp leaders to push the campers to challenge themselves without taking unnecessary risks, and what consequences do these strategies have for the campers? The study was conducted in the form of ethnographic observations at two different camps. During one week at each camp we stayed with the participants, alternately being a silent observer and listener in the background, and an active participant in conversations and activities. Narratives, direct quotes, descriptions and reflections were written down in a field diary that forms the empirical basis for the analysis. Various modes of pushing and pulling were identified and defined as cheering, tricking, compelling, monitoring and restricting. These different modes of pushing and pulling were analyzed as manifestations of force, exerted by the camp leaders within a certain age-based force dynamic that resulted in different responses among the campers, especially in terms of how they “did age” in relation to notions on autonomy and vulnerability. It is shown that manifestations of force involve the risk of putting the campers in a position of vulnerability, regardless of whether or not they are actually vulnerable. The main argument in this paper is that initiatives that in an institutionalized context aim to promote a prolonged health and well-being, targeting “older people” in a general sense, run the risk of getting the exact opposite result, namely instead learned vulnerability is implicitly promoted by removing or downplaying the agency and autonomy of the campers.
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We identified a number of themes from our analysis of the articles, measurement tools, and questions identified through a systematic literature review examining patients' care experience in rehabilitative settings. These themes are consistent with those resulting from an ethnographic study undertaken by members of our group examining the care experience of posthip fracture rehabilitation patients.5,67-70 Additional analysis of those data is currently underway with a specific view to identify domains relevant to measurement of patient experience.
To identify key dimensions of patients' experience across the rehabilitative care system and to recommend a framework to develop survey items that measure the rehabilitative care experience.
Data were sourced from a literature review that searched MEDLINE (PubMed), CINAHL (Ebsco), and PsycINFO (APA PsycNET) databases from 2004 to 2014, the reference lists of the final accepted articles, and hand searches of relevant journals.
Four reviewers performed the screening process on 2472 articles; 33 were included for analysis. Interrater reliability was confirmed through 2 rounds of title review and 1 round of abstract review, with an average κ score of .69.
The final sample of 33 accepted articles was imported into a qualitative data analysis software application. Multiple levels of coding and a constant comparative methodology generated 6 themes. There were 502 discreet survey questions measuring patient experience that were categorized using the following dimensions: rehabilitative care ecosystem, client and informal caregiver engagement, patient and health care provider relation, pain and functional status, group and individual identity, and open ended.
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Currently available instruments and questions that measure patients' experience in rehabilitative care are unable to assess the performance of rehabilitative delivery systems that aspire to integrate care across the continuum. However, question panels derived from our 6 key themes may measure the key concepts that define rehabilitative care and facilitate measurement of patient experience at the system level.
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This is juxtaposed with staff responsibility for actively meeting clients' needs, including them in decision making, and so forth. These issues reflect tensions around autonomy, control, expertise and power imbalances traditionally reported in health and care contexts (e.g. Baur et al., 2013; Gregory, 2007; Hicks et al., 2012; Kelly & Innes, 2012; Penney & Wellard, 2007). Client power, however, was also reflected in the positioning of clients as needing to be satisfied and their needs and preferences met, and the responsibility of staff to adapt.
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