Introduction
A discourse analytic approach
Selected articles and method of analysis
Overview of the three discourses
Discourse 1: caring for patients | Discourse 2: empowering patients | Discourse 3: being responsive | |
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Why be patient-centered? | - Alleviate vulnerabilities - Lessen suffering - Improve quality of diagnosis | - Facilitate self-management - Respect patient autonomy | - Depends on the person and/or context - Center processes of communication |
Patient identity: key words | - In need of care - Vulnerable - Experiencing individual | - Right to control - Capable of decision-making - Autonomous | - Multiple identities - Varying preferences |
What is the primary role of the healthcare professional? | - To care | - To facilitate, advise, and coach patients in decision-making - To activate the will and ability to make decisions | - To be responsive to (and thus accept) the patient’s needs, values and preferences with respect to the content of encounters, the style of communication, and involvement in decision-making |
Who is primarily responsible for decision-making? | - The healthcare professional | - The patient, who can decide to share responsibilities | - The healthcare professional and/or patient |
What is the role of health information? | - For a good diagnosis - For compliance | - For a good diagnosis - For choice | - Tailored information - For compliance, for choice or withhold information |
Discourse 1: caring for patients
Discourse summary
Constructing patient-centeredness as “caring for patients”
According to Hudon et al. (2012), understanding the whole person can include knowing about the patients’ life context (e.g. family, work, religion, culture, social support) as well as personal development stages (life history and personal and developmental issues). In this context, Illingworth explains how models can be used to elicit the patient’s perspective. By using the “FIFE-model”, for instance, healthcare professionals can gain an understanding of the patient’s Feelings about their problems, Ideas about what is wrong, Effect of the illness on functionality, and Expectations of the doctor (Illingworth 2010, quoting Stewart et al. 1995).Holistic care […] recognizes and values whole persons as well as the interdependence of their parts […]. The whole person is described as the biological, social, psychological, and spiritual aspects of a person. Providing holistic care allows the clinician to better understand how an illness affects the entire person. […] (Morgan and Yoder 2012, p. 8).
As this quote illustrates, patient-centeredness as a process of “caring for patients” often seems to be promoted on humanistic grounds: lessening the patient’s suffering, and meeting his/her needs seem to be constructed as ‘good things’ in their own right (Hobbs 2009; Hudon et al. 2012). In addition, holistic caring is linked to the effectiveness of care. Texts that construct patient-centeredness as caring refer to the work of Engel (1977), Mishler (1984), and Stewart et al. (1995), who have explored how an understanding of the person’s illness experience and social context leads to a better diagnosis and better decisions about treatments (Illingworth 2010; Hudon et al. 2012). Patient-centeredness as “caring for patients” is thus often promoted by critiquing the biomedical model: it is argued that the exploratory perspective on illness needs to be broadened to include psychosocial aspects (Bensing 2000; Mead and Bower 2000).Therapeutic engagement is a cyclical process based on the development of trust. […] When the process of therapeutic engagement is successful, the patient receives […] care that lessens suffering and ensures that their needs are met (Hobbs 2009, p. 57–58)
Discourse 2: empowering patients
Discourse summary
Constructing patient-centeredness as “empowering patients”
The empowerment discourse of patient-centeredness can be seen as a move away from doctor-centeredness and focuses on a redistribution of control and responsibilities from doctor to patient (De Haes 2006; Bensing 2000). Patient-centeredness as empowerment is promoted on moral grounds because it recognizes the importance of self-determination and patient autonomy (Taylor 2009):Experience has shown that when patients know they have options for the best treatment, screening test, or diagnostic procedure, most of them will want to participate with their clinicians in making the choice. This interest is shared by patients worldwide (Barry and Edgman-Levitan 2012, p. 9).
In addition, texts that construct patient-centeredness as “empowering patients” also link empowerment to the effectiveness of care, because it can increase the quality of decisions and disease management:The underlying philosophy of an empowerment-based approach […] views human beings as having the right and ability to choose by and for themselves. Self-determination therefore appears to be a strong guiding principle of empowerment-based interventions. […] The key features of an empowerment-approach are ideology-driven and concern choice and responsibility on the one hand, and skills development so as to become more competent in […] dealing with one’s disease, life and environment on the other hand (Aujoulat et al. 2007, p. 15 and p. 17).
Empowerment as patient-centered care is spoken of as particularly relevant in the case of chronic illness (mainly because of the importance of medication management) (Pulvirenti et al. 2014; Anderson and Funnell 2010), and in those cases in which there is no ‘clear-cut’ answer to a medical question (Anderson and Funnell 2010; Aujoulat et al. 2007; De Haes 2006; Sacristán 2013; Légaré and Witteman 2013):Patients provide 98 % of their own diabetes care. […] Because patients are in control of their daily self-management decisions, they are responsible for those decisions and the resulting consequences (Anderson and Funnell 2010, p. 278).
Despite the shared focus on patient involvement in decision-making, the advocates of an empowerment approach vary in the amount of responsibility they assign to patients. See, for instance, how Moumjid et al. distinguish informed decision-making from shared decision-making:The most important attribute of patient-centered care is the active engagement of patients when fateful health care decisions must be made. […] For most medical decisions […] more than one reasonable path forward exists […], and different paths entail different combinations of possible therapeutic effects and side effects. […] In such cases, patient involvement in decision-making adds substantial value (Barry and Edgman-Levitan 2012, p. 780).
This quote shows how some promoters of the empowerment discourse are more radical than others: some believe that it is the patient who should eventually make decisions and others argue that the doctor and empowered patient should make decisions together. Furthermore, various scientists emphasize that patients should still be considered empowered if they choose freely to delegate responsibility for decision-making to their doctor. According to them, empowerment is about patients being self-conscious and their behaviour being self-directed (Anderson and Funnell 2010). In other words, the key to a process of empowerment is that it is guided by the principle of self-determination (Aujoulat et al. 2007).Informed decision-making is a process that implies that the physician’s knowledge is transferred to the patient, who then has the knowledge and preferences necessary to make a decision. The patient is thus the sole decision maker, whereas in SDM (shared decision-making), the physician and the patient mutually inform each other to reach a common agreement on the decision to implement (Moumjid et al. 2007, p. 541).
Health information has a central place in this second discourse. The general line of argument is that patients need to be informed in order to be able to make decisions with respect to their health situation, an idea that has been captured by the widely adopted notion of ‘informed choice’ (Henwood et al. 2003). Piper and De Haes have summarized the link between empowerment and information provision as follows:The role of the HCP [healthcare professional] is to serve as a facilitator and expert resource […] HCPs are responsible for helping patients achieve their goals and overcome barriers through education, appropriate care recommendations, expert advice, self-reflection, and social and self-management support” (Anderson and Funnell 2010, p. 280).
Information giving then […] is not empowering per se, or in any way an empowerment endpoint […], but it is an important starting point and patients cannot be empowered without information (Piper 2010, p. 176).
In the empowerment discourse ‘information for choice’ - rather than ‘information for compliance’ - is considered an important patient right (Henwood et al. 2003; Pulvirenti et al. 2014). It is argued that, if patients lack “health literacy skills”, then this ability to “critically analyse information” needs to be built by healthcare professionals and/or the broader healthcare system (Pulvirenti et al. 2014, p. 308–309).One cannot be involved in decision making without being well informed (De Haes 2006, p. 293).
Sacristán (2013), on the other hand, argues that even with decision aids, empowerment places new demands on patients. They need to take on greater responsibilities and develop a greater level of literacy so that they are able to benefit from these aids.[S]hared decision making assumes that both the provider and the patient require access to […] the best available medical evidence relevant to the decision […] Accordingly, shared decision making often involves the use of patient decision aids—structured tools such as booklets or interactive online applications that summarize the available evidence relevant to a given decision and that, ideally, help the patient clarify her or his relevant values. […] Well-crafted tools for shared decision making can […] be specifically designed to meet the needs of people with lower health literacy […] (Légaré and Witteman 2013, p. 277 and p. 280).
Discourse 3: being responsive
Discourse summary
Constructing patient-centeredness as “being responsive”
Responsiveness is discussed in relation to the content of the medical encounter (e.g. whether or not psychosocial issues are addressed), to the patient’s preferences with respect to communication styles (e.g. a friendly or more to-the-point communication style), and as a form of sensitivity to the patient’s wishes with respect to involvement in decision-making (how much responsibility s/he wishes).Rather than […] a specific set of behaviours, responsiveness and informed flexibility should be considered fundamental qualities of PCC [patient-centered care, added by author](Epstein et al. 2005, p. 1518).
Patient-centered medicine alludes to a humanistic, biopsychosocial perspective as opposed to the conventional perspective of the biomedical model. This need not necessarily be the case though. At any one time communication may shift from one domain of this model to another and still be construed as patient-centered as long as the transition is negotiated, i.e. both doctor and patient agree to behave in this way (Taylor 2009, p 151).
Likewise, Jayadevappa and Chhatre (2011) argue that patient-centered care is about tailored care, which means that physicians and nurses accept that some patients prefer to actively participate in decision making, whilst others opt for a more passive role and wish to defer decisions to their physicians.Just as it would be sub-optimal to impose a paternalistic style on […] patients who prefer to be involved in their care decisions, it is equally sub-optimal to force a shared role on the [patients] who prefer either to make autonomous decisions or to have their doctor decide what would be best. The […] goal should be to prepare physicians to identify and assess each patient’s preferences and to adopt the style that meets the needs of each individual patient (Fineberg 2012, p. 2).
In a similar vein, Jayadevappa and Chhatre (2011) argue that cultural competence needs to be factored into patient-centered care. Among other things, understanding the meaning of culture can help healthcare professionals to understand and be responsive to patient beliefs, preferences and needs, and consequently, to build rapport and trust. De Haes (2006) points at anxiety traits as an explanation for different patient preferences with respect to communication styles, and relatedly, for differences in the effectiveness of these styles. Last, Lawrence and Kinn (2012) argue that a definition of patient-centeredness needs to be condition-specific, as patients with different diseases might value different interventions and outcomes.Sometimes referred to as cross-cultural differences, divisions in sociocultural patterns often produce dilemmas between medical experts and patients […]. These challenges may relate to differences in communication styles or spiritual beliefs, as well as the role that hierarchy and respect play in active participation in doctor– patient interactions […] Each patient and provider comes to the health care encounter with his/her own beliefs and expectations guided by a particular culture of health. […] A worthwhile goal would be to avoid defining and implementing patient centered communications as a one-size-fits-all approach (Bergman and Connaughton 2013, p. 791 and 797)
As becomes clear from the above arguments, in this discourse healthcare professionals are asked to adapt their style of communication to the person and context and negotiate responsibilities accordingly (Illingworth 2010; Taylor 2009). Ishikawa, Hashimoto and Kuchu suggest that patients need to do the same. They argue that it is important to focus on the relational process between healthcare professional and patient and how both share their perspectives, so that they can come to construct new ideas, mutual agreement and shared decisions - to which they also refer as a “shared mind” (Ishikawa et al. 2013, p. 150).It is neither an ethical lapse nor a character flaw for a patient to prefer to have the doctor decide what to do. Nor is it irrational for a patient to want to be in control of decisions, with the physician or physicians acting as advisors and guides. Indeed, the same patient at different stages of life or facing different circumstances of illness may prefer at times to be a passive recipient of care, an active partner in decision-making, or fully in control of the choices to be made. […] the capable and humane clinician will adapt a role and mode of interaction that suits the needs of each patient at each particular time. This is patient-centered decision making. It requires a readiness on the part of physicians to involve the patient in shared decision-making without feeling uniformly compelled to do so (Fineberg 2012, p. 2).
The behaviors that go along with patient-centered care are […] also having the intuition or judgment necessary to tailor explorative interventions, giving or withholding information and sharing power to the needs of an individual patient (De Haes 2006, p. 276).
Responsive information provision means that if a healthcare professional chooses to withhold information on the basis of an understanding of the patient’s cognitive capacity, health literacy, values, and desire for information, such a judgment can still be seen as “patient-centered” rather than paternalistic (Ishikawa et al. 2013, p. 150); (Epstein et al. 2005).Intervention can be a sensitive and supportive process that genuinely seeks to respond to patient preferences in informing (Piper 2010, p. 176).
Being responsive to a patient’s information needs also means that healthcare professionals carefully think about how they provide health information in any given encounters. When healthcare professionals are, for instance, faced with patients with literacy problems, they could use visual aids and analogies, and they need to be considerate in the language they use (Taylor 2009). Moreover, in situations in which patients are reluctant to be the sole decision-maker and therefore invoke the help of their doctor, healthcare professionals need not only provide patients with information, but should also provide patients with their interpretation of information (Sinding et al. 2010).In this new medical paradigm, the physician is often not the sole repository of medical information, which means that the patient–physician interaction is negotiated anew each time a knowledgeable patient is encountered, an unacceptably inefficient approach. […] A necessary future step in the further development of our new paradigm of patient–physician interaction includes a careful study of patient populations […]. By surveying patient populations with respect to autonomy, values, and medical knowledge, it will be possible to identify which patient types are most often seen. This will allow physicians to recognize patient types more quickly and understand more clearly which clinical approaches are most needed (Agarwal and Murinson 2012, p. 9–10).
Discussion
Moral questions: conversations between the discourses
Empowerment is often promoted because “it can lead to significant patient and clinician benefits, ultimately leading to better outcomes for individuals and societies” (Hannan and Webber 2007, p. 108). Moreover, patients that are involved in their care are expected to visit their doctor less frequently, which is often considered timely because of the increase of healthcare costs (Hughes et al. 2008). This argument illustrates how the discourses are linked to political interests and macro-level discourses, in this case empowerment is linked to a discourse of efficiency and related to the interests of the healthcare system as a whole.Although health care providers hold strong views regarding which patients want to, should, or even can engage in shared decision making, those views may be flawed. Surveys consistently indicate that patients want more engagement than they get. […] patients can learn communication skills and become increasingly confident in their ability to engage in decisions about their health. […] ethical and moral principles require that we not withhold it from vulnerable patients just because it may be more difficult to deliver it to them. Rather, we must find ways to deliver such care across the board (Légaré and Witteman 2013, p. 279).
Implications: the challenge of diversity
The case of Health Information Exchange
Discussions on whatever sort of patient-centered innovation run the risk of becoming unproductive if they fail to acknowledge that patient-centeredness can be constructed differently by different (groups of) actors, in relation to their varying norms, values, and interests in a local project. Consequently, rather than assuming that we all want what is best for patients, we need to anticipate dissensus and need to explore how we can deal with different discourses of patient-centeredness in relation to the local challenges we are facing.When vague and abstract […] concepts […] have to be implemented, the consensus often appears to be a superficial one. Under the outer layer of homogeneity one finds a broad spectrum of meanings, which not infrequently lead to heated discussions and a confusion of tongues (Abma 2000, p. 199-200).