Challenges of patient-centred care: practice or rhetoric
Catherine van Mossel, University of Victoria, 1223 Oxford St., Victoria, BC, Canada V8V 2V6. E-mail: <email@example.com>
VAN MOSSEL C, ALFORD M and WATSON H. Nursing Inquiry 2011; 18: 278–289
Challenges of patient-centred care: practice or rhetoric
People with a diagnosis of cancer are faced with very important decisions regarding treatment. If their cancer recurs, the decisions may be overwhelming to contemplate and give rise to uncertainties. Oncologists play a pivotal role in this decision-making process. Their day-to-day practice prior to presenting a diagnosis and decision options to patients includes accessing written accounts of patients’ health status in documents such as imaging and lab results and referral letters. In part, oncologists situate their discussion with patients on the information presented in these documents. The resulting conversation between oncologist and patient is the context in which the patient proceeds with making decisions. Our interest in this context led us to explore how medical oncologists explain treatment options to patients, how people hear and understand what they are told, and what factors influence their decision making pertaining to treatment when cancer has recurred. Interviews with oncologists reveal features of their day-to-day practice that could be considered characteristic of patient-centred care. We decided to explore the literature on patient-centred care and patient choice to see how it could inform analysis of the day-to-day practices present in the interviews.
Given oncologists’ expressions of patient-centred care principles, this paper begins by exploring the literature on patient-centred care and patient choice and their relationship to decision making. We deconstruct the concepts of patient choice and patient-centred care and discover that taken-for-granted assumptions in much of the literature is challenged in more critical literature. Following a section on method, we present the work of Argyris and Schön that assists us in noting contradictions that appear in the interviews of our study as oncologists articulate their practice. In our analysis, we offer excerpts of interview accounts that illustrate the movement away from the tenets of patient-centred care towards everyday practices in which adhering to patient-centred care is difficult. We conclude with a discussion of potential implications for nurses and identify questions for future research.
Shared Decision Making and Patient-centred Care
According to the National Cancer Institute in the United States (2008), patient-clinician communication plays an important role in optimising the health outcomes for people who have or have had cancer. One feature of communication relates to representations (styles, characterizations) of decision making and amongst the most prominent approaches is shared decision making. Fundamental components of shared decision making are the concepts of collaboration and partnership, which were taking hold in many political arenas and had entered health care by the end of the 20th century (Elwyn, Edwards, and Kinnersley 1999). These concepts, along with an increased demand for and access to information by patients, are credited with shifting roles of the doctor–patient relationship into a more active partnership. Kaplan, Greenfield, and Ware (1989) contend that when patients take an active role in making decisions about their care, health outcomes improve. The National Cancer Institute (2008) lists health, survival, and quality of life as the most desirable outcomes of improved physician–patient communication. Stewart et al. (1997) suggest that even when patients perceive that they share common ground with their physicians, positive outcomes can be measured in decreased demands on services and referrals.
According to Epstein and Street (2007), people with cancer are more likely to follow through with recommended treatment if they participate in the decision to take that course of treatment. However, Salmon and Hall (2004) problematise the idea that simply giving patients information translates into an ‘active partnership’ in which patients feel empowered to make ‘choices’. Salmon and Hall go on to distinguish ‘choice’ from ‘decision’. Examining experiences of physician–patient interactions with regard to treatment decisions facing women with ovarian cancer, Elit et al. (2003) conclude that most instances ‘are aligned with the paternalistic approach in which the physician makes the decision and the patient acquiesces to the doctor’s recommendation’ (p. 94). Women in their study were making a decision but often felt as if they had no choice. Rather, Elit et al. assert, making decisions about treatment seemed to really be about coming to terms with the disease and the treatment recommended by the doctor. Furthermore, Sanders and Skevington (2004) suggest that patients’ preferences and values may be relegated to the side line when physicians rely on scientific evidence to inform clinical decision making. ‘This is because if a well informed patient expresses a preference that is in conflict with the research evidence, their choice may be considered irrational’ (p. 676). As Elwyn, Edwards, and Kinnersley (1999) acknowledge in their literature review on shared decision making, achieving shared decision making is difficult. Importantly, that physicians provide information about treatment options and their possible effects does not necessarily simply translate to patient choice. As our study illustrates, discussions pertaining to decision making and choice with oncologists treating patients with recurring cancer raises theoretical and practical concerns.
Many of the positive presentations of shared decision making in the literature are predicated on equally positive presentations of principles associated with patient-centred care. Acknowledging the patient’s subjective experience of illness and health; incorporating the patient’s psychosocial context; respect for the patient’s values, interests, preferences, and expressed needs; shared information and education; access to care; emotional support to relieve fear and anxiety; involvement of family and friends; continuity and secure transition between health care settings; physical comfort; and coordination of care (Mead and Bower 2000; Stewart 2001; Bauman, Fardy and Harris 2003; Salmon and Hall 2004; Davis, Schoenbaum and Audet 2005; Kendall and Rogers 2007) are examples of positive aspects of patient-centred care presented in the literature. While Stewart (2001) and Mead and Bower (2000) amongst others use the term ‘patient-centred care’, others use language such as ‘patient empowerment’ (Salmon and Hall 2004) and ‘patient choice’ (Ford, Schofield, and Hope 2003). ‘Expert patient’ is also used to indicate that patients bring an expertise to the decision-making table (Newbould, Taylor, and Bury 2006). These tenets share similar principles that are prominent in health care settings throughout the industrial world including North America (Stewart et al. 2007 for example), Europe (de Haes and Koedoot 2003 for example), and the UK (Mead and Bower 2000; Salmon and Hall 2004; Kendall and Rogers 2007 for example).
In literature on patient-centred care that is specific to cancer care, Mallinger, Griggs, and Shields (2005) suggest that the focus ought be on the patient as a ‘whole person’ (p. 343) in the context of his or her psychological and social circumstances. The Canadian Partnership Against Cancer (2010) has taken up this sentiment and developed a Person-centred Care Toolkit in cancer care that emphasises the overall well-being of the cancer patient – including attention to psychological, social, spiritual, informational, practical, physical and emotional needs – rather than focusing solely on treating the tumour or the disease site embodied by the patient. Venetis et al. (2009) propose that because the psychosocial dimension of illness is often more pronounced for people with cancer than for those with acute health problems (and associated biomedical dimensions of disease) seen in primary care, people with cancer tend to have higher levels of uncertainty, anxiety, fear, frustration and vulnerability. Attending to these concerns is best accomplished, they suggest, with patient-centred communication. Stewart (2001) concludes that patients’ perceptions of an interaction will have the most significant impact on health outcomes and health care efficiency: ‘the patients’, not the experts’, views on patient centredness predicted important outcomes’ (p. 445). A typical outcome for cancer patients was ‘feeling better’ but also included measurements such as satisfaction with encounters with physicians and information provided (Stewart et al. 2007).
The above premises upon which proponents praise principles of patient-centred care may, upon surface reading, appear reasonable. Such representations are laudable – and perhaps expected – values of modern day health care practices and centres. However, there is literature that offers a more critical perspective. For example, Wilson (2001) challenges the simplistic prescriptions for how patient-centred care can be readily incorporated into everyday practices in health care. Rankin and Campbell (2006) describe the efforts of clinical pathways and treatment protocols (often called care maps) to standardise care and treatment processes. The desire to standardise care for population groups (i.e. people with a certain type of cancer) presents a challenge to care centred ostensibly on a particular patient. Bensing (2000), however, pre-empts the challenges of incorporating the concept of patient-centred care into practice by problematising the concept itself, considering it a ‘fuzzy concept’.
With ‘fuzzy concept’ is meant a global concept, that everybody will recognise in its overall meaning, but yet can have a quite different connotation for different people when going into more detail. With ‘fuzzy concept’ is also meant that the core elements are clear to everyone, but on the periphery the picture gets blurred and a bit vague. Fuzzy concepts are recognised by people, but are difficult to operationalize in measurable elements, and that is what researchers need to do (p. 21).
This paper presents findings of a study at the ‘Maplewood’ Cancer Centre in Western Canada. The study evolved from our interest in the context in which people with recurrent cancer make decisions. Typically, patients learn about their recurrence and treatment options in the office of the oncologist, the health care professional tasked with the responsibility of explaining this information. Interested in understanding how people hear this explanation, we thought it important to begin this study by asking oncologists about their approach to giving this information to their patients. Nurses interact with patients outside of these conversations with oncologists. Understanding the context in which patients proceed with decision making can inform nursing practice. This paper, then, is based on situated practices of oncologists’ interactions with patients as revealed in interviews with oncologists.
Patient-centred care emerges as central to the oncologists’ articulated principles of care guiding communication and decision making. Excerpts from this study demonstrate that while principles of patient-centred care dominate practitioners’ accounts of their espoused practice, their accounts of how they exercise these principles illustrates the contentiousness of patient-centred care and the difficulty in operationalising the principles beyond the rhetorical or even theoretical stage.
This project is sponsored by the fundraising wing of Maplewood Centre and is one of the first qualitative research projects undertaken there. Prior to data collection and analysis, we received research ethics approval from the Research Ethics Board of the centre that operates in conjunction with the Research Ethics Board of an associated major university. We elicited voluntary participation from the many medical oncologists who practise at Maplewood by sending out a letter of invitation and making a presentation at medical rounds explaining the purpose of our research. A research team member who is not an employee of Maplewood conducted the semi-structured interviews. Each interview was transcribed verbatim and anonymised to ensure confidentiality and anonymity of participants. Data analysis was an interpretive process and each team member undertook her own analysis, examining the data for themes in the oncologists’ descriptions of communicating the diagnosis of recurrence and treatment options. We then came together as a research team to identify agreed-upon themes emerging from the data.
Framing the Analysis
We draw on Argyris and Schön’s work on organisational development and Garfinkel’s work of understanding everyday practices. Together, this work provides the theoretical underpinnings that assist us in understanding the oncologists’ accounts of their day-to-day practice with patients. Garfinkel (1967) suggests that everyday practice can be identified by examining or observing practice or obtaining accounts (verbal and documentary) of those familiar practices. The participating oncologists in our study provide us with interviews revealing two levels of accounts: claims of how they approach their practice and examples of operationalising this approach in their everyday practices. According to Garfinkel (1967), accounts such as these display a social accomplishment that contains ‘observable and reportable’ aspects that are characterised by what people do (p. 1). Central are the notions that individuals’ awareness conveys their everyday understandings/knowledge about their actions and provides reasons for acting as they do. In these ways, accounts may be conceptualised as those that are accountable (observable-reportable) in Garfinkel’s terms. According to Garfinkel, accessing people’s everyday understanding/knowledge is achieved through accounts. ‘The activities whereby members produce and manage settings of organised everyday affairs are identical with members’ procedures for making those settings “accountable”’ (Garfinkel 1967, 1). Garfinkel’s work has helped us theorise our participant’s accounts as a conveyance of their everyday understanding/knowledge.
We also draw on Argyris and Schön’s work on organisational development. Argyris and Schön propose that people develop a ‘theory of action […] a set of rules that individuals use to design and implement their own behaviour as well as to understand the behaviour of others’ (Argyris 2006, 273). When asked what rules govern their actions, Argyris and Schön suggest, people offer their ‘espoused’ theory of action – what they think they do. What Argyris and Schön find paradoxical, however, is that the ‘master program’ that people think they use – their ‘espoused-theory’– is rarely the theory of action they actually use – what Argyris and Schön call ‘theory-in-use’ (Argyris 2005). They assert that statements in documentary sources (mission statements for example) represent the espoused-theory. However, in action (day-to-day practice), people’s behaviour is different from what they espouse they do. ‘Put simply, people consistently act inconsistently, unaware of the contradiction between espoused-theory and theory-in-use, between the way they think they are acting and the way they really act (Argyris 2005, 262). In other words, espoused theory is what ‘we say we do’, where as theory-in-use is ‘what we do’. The oncologists’ claims represent Argyris and Schön’s espoused-theory and we take their descriptions of acting on these claims as representing theory-in-use or Garfinkel’s everyday practice. We are not suggesting that all oncologists share one espoused-theory, or that they only have one espoused-theory. Rather, this paper attends to the espoused-theory that appeared in the interviews, that of patient-centred care, and how it plays out in the oncologists description of their day-to-day practice. Analysis of the interviews reveals Bensing’s (2000) blurred periphery of the oncologists’ espoused-theory of patient-centred care.
Our interest is in the oncologists’ explanations of how they explain to patients that their cancer had returned. Rather than approaching the data with a preconceived sense of what we would find, our analysis was inductive in that the themes emerged from the data. What becomes clear is that each account began with the oncologists’ philosophy of and guiding approach to patient communication and care in their everyday practice that almost exclusively articulate the principles of patient-centred care. In turn, as the oncologists detailed how they communicated with patients and enacted their approach (rather than identify the principles that guide their communication), it became evident that they did not tend to follow through with their original claims. The oncologists’ use of the principles of patient-centred care, patient empowerment, and patient choice to frame their approach to practice (espoused-theory) was compromised in their descriptions of their practice (theory-in-use), which contained assumptions, contradictions, and a clash of knowledges that collectively compromise accomplishing their guiding principles. Following are excerpts that illuminate the themes revealed in the data. They are presented in a particular order so as to depict the original claimed approach and the slipping away from this approach: (i) ‘It’s their decision’; (ii) realigning patients’ expectations with ‘what’s real’; and (iii) contradictions to the claims that outline three assumptions.
‘It’s their decision’
The oncologists in our study highlight concepts of patient empowerment and choice as they frame how they will proceed discussion with patients. The following excerpts illustrate how four different oncologists offer such framing:
Dr. Black1: I try to keep it open so that it’s their decision.
Dr. Strauss: Whatever decision you make is the right decision. I say there is no such thing as the right decision, you know or a bad decision.
Dr. Marshall: I always say options … We can do nothing, we can do this or we can do that … And I always say if we do nothing, of course, that doesn’t mean nothing. It means supporting you if you have pain, giving you pain killers, you know, that sort of thing.
Dr. Mercer: I usually try and say that whatever decision you make is probably the right one for you.
As introductory comments in the transcripts, these excerpts reveal a principle of patient-centred care in the launch of their accounts. For instance, evident is the principle of patient empowerment as Salmon and Hall (2004) describe it; these oncologists are encouraging or ‘empowering’ their patients to take control over their treatment direction. Their use of ‘their’ and more particularly ‘you’ are conversational ‘moves’ (Lyotard 1984) signalling precisely when the patient has an opportunity for being empowered in this theme. In Lyotard’s view, people ‘move’ conversation in particular ways at particular times to guide the conversation in the direction they intend to pursue. We suggest a respect for and value of the patient’s perspective and choice is underlined: ‘there is no such thing […] as a bad decision’. At this point, the concepts of choice and decision appear conflated. Providing patients with options assumes making a decision is making a choice. We might assume oncologists are offering patients choices of treatment options and patients are making decisions. But it is not clear that, or how, patients are making choices. As Elit et al. (2003) demonstrate, when patients make a decision, they do not necessarily feel like they have a choice. Choice and decision are not always inclusive. Furthermore, the apparent neutrality of the oncologists about patients’ decisions implies a balance of power between physician (offering choices) and patient (making decisions).
We read these accounts as the oncologists’ claim to practice the principles of patient-centred care, recognisable as Argyris and Schön (1974)‘espoused-theory’: it is their claim of what they do. But Argyris and Schön remind us that what people actually do (theory-in-use) is often different from what they say they do. The oncologists give us an account of following through with what they ‘say they do’ and in doing so, demonstrate their theory-in-use. Early into another interview, Dr. Taylor describes his day-to-day practice when he says:
Dr. Taylor: But having said that, there’s no question that I will skew my discussion in, I don’t know, subtle, or maybe not so subtle ways. So, you know, if I, if I see somebody with heart disease and diabetes and 82 years old, my take on treatment will be, you know, I’ll say, ‘Well, there is some treatment for this but you know it is associated with toxicity you know.’ Whereas, and the question is really whether that’s going to be something that’s going to be very good for you … Whereas somebody who’s young and healthy otherwise, you might want to might slant it quite differently.
Interviewer: Take a subtle lead perhaps.
Dr. Taylor: Yup, yup.
Interviewer: With the options still being theirs.
Dr. Taylor: Same options, but it’s a different emphasis.
Adhering to the ideal, and his espoused-theory, is difficult for Dr Taylor. He states there may be instances where he does not provide a patient with all the options, that he sometimes ‘skews’ the conversation. Here, we see his adherence to patient-centred care is slipping. He is beginning to unveil what he does: ‘subtle, or not so subtle’ encouragement of one treatment option over another. Another example reveals a following through with principles of patient-centred care:
Dr. Boon: They haven’t had any or very much treatment so they’ve got a lot of treatment options available for them. I try and say ‘look, our goal right now is to try and shrink this, buy you some time, and make you feel better. This is what we have to offer.’ And then I go through all the side effects and then I always tell them that they can choose to do nothing, like supported care, or they can choose to go on treatment. Sometimes I give them my advice. So if I think the treatment is going to work and at the time they look healthy, I’ll say ‘you know what, in your situation I probably would try it.’ If I’ve got a really frail person I try and talk them out of it.
In both of the above excerpts, there is a semblance of choice but also ‘subtle’ influence. Lyotard (1984) describes this approach as an important conversational ‘move’ that, in the last excerpt, enables the oncologist to underline how she values choice while stating ‘they can choose to do nothing, like supported care, or they can choose to go on treatment’. However, in this account, chemotherapy treatment emerges (through Dr. Boon’s presentation of it) as the best option to ‘shrink this’, ‘buy you some time’, and ‘make you feel better’. Interestingly, supportive care is equated here with ‘doing nothing’. We speculate this ranking of treatment options must have an effect on the patient, perhaps giving her a clear indication of what the oncologist thinks she should do. Additionally, Dr. Boon’s account offers an example of Argyris and Schön’s espoused-theory and theory-in-use; she contradicts her ‘they can choose’ with ‘sometimes I give them advice’ and ‘I probably would try it’.
These accounts represent acts of power whereby presentations of treatment options are skewed, rendering patients’ choices as less than informed. While earlier in their accounts, oncologists present impressions of power tipped toward the patient, they follow up with examples in which they no longer offer treatment options equally. In such examples, oncologists have exercised their power to influence patients’ decisions ‘subtly’. Such messages may overwhelm patients who are vulnerable and trust – or depend on – the expert knowledge of their oncologists (Elit et al. 2003), even if the ‘advice’ is less about professional knowledge and more about personal inclinations.
Furthermore, we are intrigued with the tension between oncologists’ assertions that patient ‘choice’ is fundamental and their description of their practice of relaying treatment options. Some patients expect their oncologists to exercise their judgement and offer advice concerning treatment decisions. And some oncologists offer this advice. We do not want to problematise this kind of advice-giving or influence. However, while one oncologist articulates how he makes decisions and provides particular ‘choices’ to particular patients, it is evident that he does not provide all the options to all his patients. As noted above, Dr. Boon states, ‘If I’ve got a really frail person I try and talk them out of it’, a patient might not be told all the options. These accounts expose how ‘choice’ is muddied by inferences (of the best treatment) and omissions (of some choices for consideration). These same accounts also raise questions of what influences and whose preferences are considered by oncologists in their presentation of treatment options.
Realigning patients’ expectations with ‘what’s real’
That patient-centred care and patient choice are ideals held in theory but difficult to achieve in everyday practice becomes increasingly evident in the accounts of the oncologists. Further excerpts reveal practices of exclusion or partitioning people into categories: those who can hear the options, those who cannot, and those who can hear some options but not others. In describing what they do in day-to-day practice, oncologists in our study indicate that being patient-centred, allowing patients to have and make choices, is sometimes abandoned. Such decentring appears in the following excerpts from two different oncologists:
Dr. Black: I had to talk her into chemo.
Dr. Strauss: It’s what’s reasonable to expect … let’s negotiate around that … I’m not there to give them what they want … I am there to ensure that their expectations are aligned with what’s real … to give them hope not by telling them they can be cured but by telling them that they have access to somebody who cares about them and can help them through out.
Dr. Black did not accept the patient’s wish not to have chemotherapy; rather Dr. Black had to ‘talk her into’ it. Dr. Strauss’ account illustrates a differentiation between what he knows is reasonable and real and what his patients know. Initially he implies a negotiation, but proceeds to essentially remove the patient’s negotiating power. He states that many patients have ‘(un)real’ expectations and it is his role to make those expectations ‘real’, not necessarily to ‘give them what they want’. Both Drs. Black and Strauss appear to attempt to align patients’ expectations with their own. Patients may have expectations (of medicine or goals of treatment, for example) that differ from what oncologists consider valid. ‘I am there to ensure that their expectations are aligned with what’s real’. However, in an exercise of power, these oncologists appear to assume they are in the best position to make this judgement. Dr. Strauss makes an interesting move by framing ‘what’s real’ in the language of hope and caring, generally valued social concepts upon which he draws to emphasise preferred treatment options. This move serves to reassure the patient that Dr. Strauss really does have the patient’s interests at heart. It also serves to position patients to hear only the options the oncologist chooses to give him.
That Dr. Strauss notes that he has a grasp on ‘what’s real’ but the patient does not indicates how he positions his knowledge and expertise in relation to the patient’s. He appears to recognise a clash in their respective knowledges. In his attempt to bridge these knowledges, however, he challenges the patient’s knowledge of what is reasonable, what is real and what her expectations should be of her oncologist and of treatment outcomes. Dr. Strauss orders (Foucault 1970) their respective knowledges, placing his (scientific, educated, objective) knowledge as privileged over that of the patient (subjective, experiential). This raises to the surface a contradiction: what he ‘claims to do’ and ‘what he actually does’. Dent (2006) proposes that health care professionals perceive patient ‘choice’ as ‘undermin(ing) their role as independent, authoritative and expert health advisor’ (p. 453) and compromising their professionalism. Additionally, we suggest that such instances of ordering knowledge and expertise are contrary to the principles of patient-centred care found in most of the literature and espoused by the oncologists in this study. The claim (espoused-theory) to present the options in a neutral fashion and to let patients choose is contradicted by the description of everyday practice (theory-in-use) in which the clash of knowledge requires the patient to ‘acquiesce’ (Elit et al. 2003) to their oncologists. As oncologists provide further statements about their everyday practices, their inconsistencies place the principles of patient-centred care and patient choice in doubt and underscore how the rhetoric is difficult for them to adhere to their everyday practice. Patient-centred care is emerging as Bensing’s (2000)‘fuzzy concept’.
Contradictions to the Claims
Another underlying feature of the transcripts to which we wish to draw attention are assumptions that oncologists make, again in the context of espoused principles of patient-centred care, and what we see as contradictions therein. We will highlight three assumptions that are represented in their accounts: (i) oncologists prioritise ways to ‘know’ (about) patients; (ii) oncologists are clear and their recollection is accurate but patients do not (cannot) hear; and (iii) professionals’ goals are usually better than patients’ goals. We posit that these assumptions jeopardise the likelihood of patient-centred care but inform the oncologists’ theory-in-use.
Assumption about knowing a patient
In the following account, Dr. Boon reveals her privileged ways of knowing the patient: first, from the chart and second, through a face-to-face encounter with the patient. Her assertion in the following excerpt about the value of the chart is incongruous with her earlier assertion of the primary need to get to know patients. This excerpt reveals the questions Dr. Boon asks of each patient’s health status (information she looks for in the documentation in the chart) prior to meeting the patient:
Dr. Boon: So just from the perspective of the cancer, how has it recurred? What organs are involved? What’s the remaining function of those organs? How is it impacting the patient? So, does it need to be treated if it’s not affecting the patient? Likely success of any treatment? The likely toxicity of any treatment? The likely outcome from a palliative or symptom based approach versus symptom perspective? Their outcome, their survival outcome? Their functionality outcome with or without treatment? Those are things that I would gather, you know, from the chart before I go in to see the patient so that I know what’s been affected. What the behaviours are. What the available options are from a patient perspective. And all this before I even sort of say hi.
This excerpt demonstrates how Dr. Boon gathers understandings of patients prior to meeting them face-to-face. Dr. Boon interprets the chart as a rather detailed representation of the patient. Her apparent assumption is that the documentation in the chart reveals core information and understandings about the patient and his situation upon which she makes both an assessment and recommendations. She lists what she needs to know about a patient that she can glean from the chart; this list is lengthy and thorough. Dr. Boon is able to know the patient in depth, from ‘what organs are involved’? to ‘their outcome, their survival outcome’. And she knows this ‘from a patient perspective’. We question how a chart, which offers a medical representation of a body, can offer a patient’s perspective. In this sense, Dr. Boon appears to suggest she knows the patient from the chart. Dr. Boon then bases her interaction with the patient on what she appears to have gained from the chart.
This excerpt of Dr. Boon’s account illustrates that the chart serves to socially and discursively construct the patient (Bloomfield and Vurdubakis 1994) before she meets this patient face-to-face. Smith (1990) would call the chart a textual reality: it has been worked up as ‘actually what happened/what is’ (p. 75) and offers ‘givens-in-the-texts’ (p. 71) that Dr. Boon knows how to read. More than just contextual information of test results and a record of treatment, the documentation in the chart is read as factual and appears to take the place of immediate experience. This kind of documentation objectifies knowledge of the patient and subjugates the patient’s experience, knowledge and the patient himself. In other words, the written account discounts patients’ experiences. Here, a patient’s reality is constituted in the documentary form of the chart and it becomes knowledge Dr. Boon can rely on. Most remarkably, Dr. Boon claims to know all this information ‘before I even sort of say “hi”’. Dr. Boon’s everyday practice of speaking with patients about cancer recurrence is guided primarily by the chart and only secondarily by a face-to-face encounter with the patient. We are not questioning the reasonableness of expecting that the chart contains information that is vital for oncologists to know as they prepare for a consultation with a patient, such as the patient’s history, background, and lab and imaging reports. In this example of the oncologist’s day-to-day practice, the chart seems to remain the privileged representation of the patient. We propose, however, that the chart cannot stand in place of the patient, particularly if the patient is to remain central.
Assumption about reliability and comprehension
The third assumption that shows up in the data deals with the oncologists’ confidence in patients’ interpretation of the information they have heard. While the accounts started off giving the decision-making power to patients, the following excerpt raises questions about whether this oncologist presumes patients have the ability to understand the information necessary to make those decisions. In the following excerpt, Dr. Marshall grapples with an unsettling interaction with a patient and in doing so, makes an assumption about the patient’s ability to take in and retain information:
Dr. Marshall: There was a young woman not long ago, after we talked for forty-five minutes she said to me ‘do you think if I don’t have chemotherapy I’ve only got five years, ten at the outside’? That kind of hit me like a baseball bat ‘cause I had thought we talked really clearly about a very advanced disease where the likely timeframe with or without chemo was months … very, very interesting learning experience because an intelligent woman, well educated woman hadn’t heard what we’d been talking about together. So I try to come back and I’ll ask them what is it you’re asking.
This account describes a story in which Dr. Marshall was startled by the difference in this patient’s understanding and his recollection of what he said. Dr. Marshall asserts his unambiguous presentation of information and in doing so, he posits that this patient did not (cannot) hear and, therefore, has inaccurate recollections. According to Dr. Marshall, this patient was an ‘intelligent woman, well educated’. Yet he questions how she could have misinterpreted 5–10 years when he claimed he said months: ‘I had thought we talked really clearly about a very advanced disease where the likely timeframe with or without chemo was months’. In the interview, the oncologist says that even the husband misunderstood. The leap from months to 10 years prompts us to ask the question: What kind of conversation results in this significant misunderstanding? However, Dr. Marshall remains confident in the accuracy of his recollection. This raises a question of what other reading Dr. Marshall might have made of this misinterpretation: was he as clear as he thought? Was the language Dr. Marshall used not well aligned for the patient? Regardless, Dr. Marshall appears to lay the responsibility of any misinterpretations or understandings with the patient.
Two assumptions can be addressed in the proceeding excerpt. First, if an ‘educated’, ‘intelligent’ patient (features Dr. Marshall is emphatic about) is so confused, then perhaps he can safely assume most people will also be confused, particularly, perhaps, uneducated or not-as-intelligent patients. Dr. Marshall describes this patient as almost a model patient and even she did not hear. Second, this excerpt reveals an assumption that Dr. Marshall has been entirely and appropriately clear and that the confusion rests with the patient and her husband. Dr. Marshall does not offer any explanation as to how this confusion could occur, other than the patient misunderstood. With these inferences at play, day-to-day practice is further slipping down the slope away from the previously espoused principles of patient-centred care.
Dr. Marshall is not alone in his apparent belief that patients cannot take in what they hear. The following excerpt offers another example of an oncologist’s encounter with a patient who, the oncologist believed, had an inaccurate interpretation of what occurred. In the interview prior to this excerpt, Dr. Taylor explains that he knows (he does not say how he knows) this patient ignored a cancerous growth in her breast for 5 years. When it came to the surface, the patient stated she thought it was a boil. After it was diagnosed as cancer, she had radiation therapy, but also took supplements. She was positive it was those supplements that caused her to feel better, not the radiation, which Dr. Taylor believed resulted in the improvement. After relaying this story, Dr. Taylor offers the following:
Dr. Taylor: You can tell this woman she has cancer. You can deny that what she’s doing is really doing (treating) it and you can say ‘look we radiated it and then it went away, can’t you see this?’ And no, that woman, no matter what you tell her, is not going to get it. She doesn’t want to get it. She, her denial is her protection. (emphasis in audio of interview)
Interviewer: That’s her way of getting through the day.
Dr. Taylor: Yeah. But if you asked her to tell me, you know, what I tell her versus what I really do tell her, you will get a completely different story.
Dr. Taylor reveals his frustration with this particular patient. He explains that the patient does not ‘get it’, and goes on to say ‘she doesn’t want to get it’. He positions his version of why she feels better as accurate and the patient’s version as way off the mark. In addition, he asserts the patient will not be able to tell the story as it really happened; she does not understand ‘reality’ and is in ‘denial’. Dr. Taylor and the patient each have different understandings or ‘take-away’ messages. But Dr. Taylor assumes he has the mastery and the patient does not; his knowledge counts, hers does not. Such a ‘move’ instantiates a hierarchy and the patient’s knowledge is subjugated and dismissed within this hierarchy.
Assumption about legitimacy of goals
The third assumption within this theme deals with the legitimacy of patients’ goals of their treatment. In the excerpts presented thus far, oncologists’ accounts have illuminated a distancing from the principles of patient-centred care. However, in the following accounts, their loyalty to these principles is seen to be further eroded and replaced by hierarchies of knowledge. The following account infers that this oncologist has appropriate goals for patients and those patients sometimes have unreal goals that need correcting.
Dr. Black: So I already have goals when I step into the room. I think most of it is sort of nonverbal cues that you try to be open for. You try to see how the spouse is reacting as well and how the children are reacting. How shocking this is. Whether they support you in that. I generally do say, you know, how does that sound. But I don’t usually go into specifics on, you know, exactly what are you looking for. When they’re on treatment I ask them how their quality of life is.
Interviewer: Right okay.
Dr. Black: Some people I feel are really pretty borderline on quality from my perspective and I ask them how they’re doing and they say I’m good. They’re okay with how things are. Yeah. They’re like yeah. But in terms of actually specifying what their goals are …
Dr. Black: I generally don’t. So a lot of it is my own goals. My own understanding through experience and knowledge what the likely issues will be for the majority and what my issues will be and then try to address them.
Dr. Black: And mostly it’s a fairly open discussion. And I tend to be fairly, I’m hoping, fairly non threatening.
In this excerpt, Dr. Black states that before she meets the patient, ‘I already have goals when I step into the room’. While stating that she wants to know about patients’ quality of life, Dr. Black also states she does not inquire about their goals, preferring to set her own goals for her patients based on her ‘experience and knowledge’. Dr. Black establishes a ‘me’ versus ‘them’ scenario where her knowledge is privileged: ‘my (the oncologist’s) own goals’ appear more important than ‘their (the patients’) goals’ because she does not ask about them. Dr. Black’s account reveals her good intentions and internal struggle: she wants to be ‘non-threatening’; ‘mostly it’s a fairly open discussion’. But this claim is refuted in her preceding comments. Although claiming to be open and non-threatening, she infers that her goals, based on her expertise and knowledge, are better than the patients’. This excerpt demonstrates that her theory-in-use contradicts her espoused-theory and she establishes her hierarchy of ways of knowing; she is accounting for her actions. Dr. Black’s intentions appear virtuous enough – she wants her patients to have a good quality of life. But she cannot believe her patients’ assessment of their own experience, positioning, it seems, their accounts as untrustworthy and her patients as incompetent. To strive for improved quality, she appears to abandon any inquiry about patients’ goals. An absence of a patient’s goals – or even an inquiry into them – resembles what some may suggest as the predecessor to patient-centred care, that is doctor-centred care. Dr. Black appears to have decided whose goals count and on whose goals decisions should be based. As this account makes clear, patient-centred care and patient choice is familiar in rhetoric (espoused theory) but uncomfortable and unfamiliar in practice (theory-in-use).
In its 2006 strategic plan, Maplewood Cancer Centre lists ‘population-based, outcome focused and patient-centred’ care as amongst its primary priorities. The principles of patient-centred care permeate the articulation of health care providers’ everyday work at the centre: it is what they espouse. In interviews with oncologists about their approach to informing their patients of a diagnosis of recurring cancer and discussing treatment options, the patient appears ‘front and centre’. Moreover, patient-centred care principles as found in the literature shape and frame participating oncologists’ presentations for everyday practices with patients. Yet, as the interviews unfold and the oncologists expand on their descriptions of everyday practice, the strength of the commitment to patient-centred care weakens and cracks begin to appear; the ground appears to shift. The intent of the espoused-theory is compromised by contradictions and assumptions, revealing a slope away from patient-centred care with the effect of decentring the patient. We do not intend for a moment to suggest that the oncologists in our study purposely stray from their stated values and principles. Rather, transcripts reveal that the concept itself is contentious and integrating the principles into day-to-day practice is difficult, particularly when treatment options are complex and their impact on people’s lives are significant, and in many situations, even risky.
We highlight how operationalising the principles associated with patient-centred care are mired with tensions between some oncologists and some patients at Maplewood. When patient-centred care is taken-for-granted in everyday interactions, it is likely assumed to be accomplished without problems. However, the above presentations of familiar practices of oncologists suggest an alternate reading of those same everyday practices. The previous excerpts illuminate difficulties oncologists encounter and expose the challenges of adhering to the principles of patient-centred care. They highlight how patient choice and decision making are not of the same order; neither linear nor straight forward. The principles are also complicated in practice by layers of institutional standardisation that frequent care planning, seen in particular in the ubiquitous treatment protocols and care plans that have people’s cancer experience mapped out before them, with little room for variances based on people’s decisions, particularly ones that may differ from the recommended treatment plan. Further complicating and dominating cancer care (and other health care practices) is the language of evidence-based practice that relies on an epistemologically-based hierarchy of evidence that traditionally promotes a biomedical model and excludes subjective dimensions of disease (Edwards and Elwyn 2001; Goldenberg 2006; Lambert, Gordon and Bogdan-Lovis 2006). Wanting their patients to receive the best, presumably evidence-based, care, several of the oncologists in this study reference their clinical knowledge as important to determining goals and treatment. We contend that evidence-based practice rests in a paradigm opposed to patient-centred care. Bensing (2000) proposes that physician–patient communication can play a significant role in bridging the gap between evidence-based medicine and patient-centred care. We concur with her analysis of the two approaches but find the solution simplistic. Further, we problematise the compatibility of the two concepts.
Authors debate whether ‘patients do not hear much of what is said after the crux of the bad news is delivered, and this inability of patients and families to process and later recall information conveyed about the bad news has been empirically documented’ (Ptacek and Eberhardt 1996, 498). In this study, Dr. Marshall’s story of the patient who misunderstood the time available to her appears to substantiate Ptacek and Eberhadt’s claim. However, this story prompts us to consider the benefits of examining such an interaction with a different approach to ensure patients’ and oncologists’ understandings are closer in alignment with each other and to avoid a misunderstanding as drastic as what Dr. Marshall describes. Furthermore, if this experience is commonplace, we question how it contributes to ‘empowering’ patients to make decisions.
These above interview accounts reveal the potential for tensions that materialise with attempts to practice according to the principles of patient-centred care. Professional knowledge and expertise is no longer paramount when patient choice takes on importance. The oncologists in our study are challenged by patients who have different goals or choose treatment options other than what the oncologists believes is appropriate, reasonable or ‘what’s real’. Dent (2006) proposes that health care professionals perceive patient ‘choice’ as ‘undermin(ing) their role as independent, authoritative and expert health advisor’ (p. 453) and compromising their professionalism.
Based on the above analysis, there appears to be a shift occurring in the oncologists’ accounts of their everyday practice. For example, consultations with patients appear to begin with the patient’s interests at the centre and conclude with the oncologist’s interests at the centre. The accounts of the oncologists describe what has become their routine of practice (Garfinkel 1967), which slips away from patient-centred care to their more familiar territory of exerting influence and directing care. It is to this routine of practice that the oncologists in our study turn as they deal with these tensions and challenges.
At this point, we ponder the effects of the oncologists’ accounts on patients. We can see the moves the oncologists made that have the effect of decentring patients. Although seemingly at the centre initially, patients are slowly moved out of the way as the oncologists exert their expertise – or the chart – as a more relevant and appropriate source of information. These moves are in sharp contrast to claims of patient-centred care and patient choice that begin their accounts. Are patients lulled by their initial placement at the centre of planning future care? Are they convinced by the expertise of their oncologists? How do patients respond to their oncologist’s ‘moves’? How do they see their role in relation to the role of the oncologist? Are they influenced by the oncologist’s presentation of options? Do they believe they are in the position of decision maker? We are confident that the way the oncologists approach their encounters with patients has very particular effects on patients. The next phase of our study will inform our research by including patients and oncologist consultations during which oncologists relay information and treatment options to patients. In turn, these same patients are interviewed about their perceptions of making decisions based on what they heard from their oncologist. How the challenges facing oncologists play out in these encounters and in the decisions and lives of people with recurrent cancer as revealed in their descriptions promises to be enlightening. As Blickem and Priyadharshini (2007) suggest, patients’ narratives will be instructive in understanding how they experience patient-centred care and what health care providers can learn about it as a model of care – including whether or not patients view it as being of primary interest to them when faced with a recurrence of a life threatening disease.
Collectively, oncologists’ accounts reveal tensions and contradictions to the notions of patient-centred care in everyday practices with patients whose cancer has recurred. The accounts of the oncologists suggest that adhering to the principles is challenging. However, we suggest it would be considered unacceptable to abandon the concept completely, particularly, we argue, in a context where the notions of autonomy and choice are part of free market philosophy and considered fundamental. As Salmon and Hall (2004) assert, patient-centred care ‘is in tune with a wider political and cultural emphasis on individual choice (p. 53)’. Thus, it must remain in rhetoric. This study helps highlight theoretical and practical complexities in taking up characteristics of patient-centred care in day-to-day practice. Our analysis of the accounts of oncologists disrupts the notion that patient-centred care is easily attainable. Given these tensions and the apparent difficulty in accomplishing the principles of patient-centred care, we wonder whether the espoused values of this approach can be (fully) realised. Further research is needed to address how to attend to patients in day-to-day practice if we are going to keep them central and take patient-centred care beyond rhetoric.
While the above analysis is based on interviews with oncologists, challenges in practising the principles of patient-centred care likely confront other health care providers as well. Nurses also play an important role in the lives of people with recurring cancer. Implications of what we have discussed in this paper need to be considered in understandings of patient-centred care that is often discussed in nursing circles. Nurses have interactions with patients as they make on-going decisions and follow through with treatment plans. Nurses may have some of the same assumptions regarding choices and decisions that the oncologists in our study have made. Although part of a health care team, oncologists play a pivotal role in articulating care plans with/for patients. The oncologists’ role is to make a diagnosis, relay it to patients, and recommend treatment options. If oncologists, as key players, are facing difficulties, we can only assume that other care providers such as nurses are facing them as well.
Because oncologists in this study did not acknowledge these tensions, we suggest they remain unknown to them. Typical of many axioms, iterations of patient-centred care have become highly touted but rarely examined in day-to-day practice by those who claim it as framing their practice. While health care providers rhetorically articulate patient-centred care as a guiding principle of practice, simply espousing its importance in mission statements, letter head and documentary sources is not necessarily a reflection of everyday practice. Rather than allow concepts such as patient-centred care to become unassailable in health care settings, it is incumbent on critical researchers to examine how it is, or can be, taken up beyond rhetoric into practice.
All names are pseudonyms.