“Every Patient has the Right to get the Treatment that
Suits her Best”
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An ethnographic exploration of the way the medical culture at a gyne-oncology
department of a Dutch academic hospital affects the practice of Shared
Decision-Making principles in daily practice
Sabine Verschuur – 10172440 Medical Anthropology and Sociology Supervisor: Trudie Gerrits
Second Reader: Bregje de Kok 22/08/2018 – Word count: 20.705 sdverschuur@gmail.com
2 Table of Contents
Acknowledgements………... 4
Chapter I – Introduction……….... 5
Outline……….…. 6
The Shared Decision-Making Model……….…….. 7
SDM in Oncology……… 9
Medical Culture ………... 10
Socialization……….… 11
Habitus………. 11
Chapter II – Methods……….…… 13
Setting and Actors……… 13
Step 1 – Broad Observations……… 14
Step 2 – Focused Observations……… 14
Step 3 – Selective Observations……… 15
Interviews………. 15
Ethical Considerations………. 16
Reflection………. 16
Chapter III – ‘A Medical Culture Limiting the Practice of SDM’……… 18
Centrality of EBM……… 22
EBM during Meetings………. 23
Consequences of EBM in Consultations………. 26
EBM and Risk Avoidance in Medical Culture……… 26
Search for Consensus………... 27
Consensus during Meetings……… 28
Consequences of Reaching Consensus in Consultations……… 29
Consensus and Risk Avoidance in Medical Culture……… 30
Hierarchy……….. 30
Hierarchical Relationship between Gyne-oncologists and Residents……. 31
Hierarchical Relationship between Gyne-oncologists and Nurses………. 32
Hierarchical Relationships among Gyne-oncologists………. 33
Hierarchy in Medical Culture……….. 34
Pace……….. 35
Pace during Meetings……….. 35
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Pace in Medical Culture……….. 36
Practice of SDM and Space for Individual Values……….. 37
Trends in the Practice of SDM………... 37
Different Views on the Practice of SDM………... 38
Space for Individual Values in Medical Culture……… 40
Chapter IV – Conclusion and Discussion……….. 41
Recommendations……… 42
Future Research……… 43
References……….……… 44
Appendix A – Descriptive Question Matrix (Spradley, 1980)……….……… 46
Appendix B – Atlas.ti Codes Report (11-04-2018)……….……….. 47
Appendix C – Observation Forms……… 49
Appendix D – Cultural Dimensions (Hofstede, 2011)………. 50
Appendix E – Checklists Step 3 (Makoul & Clayman, 2006; Lindqvist, 2005)……….….. 51
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Acknowledgements
First, I would like to express my gratitude to all the staff at the gyne-oncology department of the Radboud Medical Center, who, during ten weeks, accepted my presence in their daily work life. Without their open and welcoming attitude, I would not have been able to collect all my data.
I would like to thank Trudie Gerrits for providing me the opportunity to be included in this project. Thank you for all your help, feedback and guidance throughout the process, it must have been a challenge sometimes to guide a psychology student in her first steps in Anthropology research. Thank you and my second reader, Bregje de Kok, for the flexibility during the last phase of this thesis.
A great appreciation should also go to Annemijn Aarts, Fedde Scheele and Didi Braat, who, together with Trudie Gerrits, thought along and gave advice at every step of the research process, inspiring and motivating me in the subsequent steps.
Finally, a special thanks goes to Laura Spinnewijn, who allowed me to easily get access to the gyne-oncology department. The many brainstorm moments we had together during the process have been crucial to achieve this result. I do hope that this research data will be of value for your PhD thesis, for which I wish you all the luck.
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Chapter I - Introduction
In recent decades, a shift in decision-making processes has taken place in healthcare settings in many Western societies (Charles et al., 1997), including the Netherlands since 2006 (van der Weijden et al., 2011). From a paternalistic model, where the practitioner was at the center of the decision-making process and was viewed as an authority (Samra, 1993), the focus is now on patient-centered health care, where the patient is supposed to have a more important role in the decision-making process about his or her treatment. As part of this shift, the shared decision-making (SDM) model has made its way into different healthcare settings as a new way to include patients in the decision-making process (Charles et al., 1997). Indeed, the belief is now that “every patient has the right to get the treatment that suits him or her best”2, and that the practitioners
thus need to include patients in deciding which treatment that is.
Different definitions of SDM exist. In this thesis, I will use Stiggelbout et al.’s definition (2012) – “Clinicians and patients making decisions together using the best available evidence” (p.1) – with the characteristics formulated by Charles et al. (1997): “SDM involves at least two participants – the physician and the patient”, “both parties take steps to participate in the process of treatment decision-making”, “information sharing is a prerequisite to SDM” and “a treatment decision is made and both parties agree to the decision” (p.688).
So far, research on the effects of SDM has mostly focused on short-term effects, such as cognitive and affective outcomes in patients (Elwyn et al., 2016). Examples of these outcomes are “a willingness and readiness to undertake initial treatment steps, trust in the medical decision, realistic expectations and perceptions of risk, increased patient satisfaction and better adherence to treatment” (Hauser et al., 2015). Hack et al. (2006) state that participation in the decision-making process increases psychological wellbeing, physical and social functioning and overall quality of life for patients. Although long-term consequences have hardly been researched (Elwyn et al., 2016), the promising short-term outcomes have led to many medical settings wanting to implement SDM. However, the implementation of SDM has been far from easy (Stiggelbout et al., 2012, p.1) due to individual, interactional, or organizational problems like time
restrictions, physicians’ lack of evidence-based information about the best treatment, or their reluctance to share data with the patient for example (Elwyn et al., 1999; Elwyn et al., 2016).
In the Netherlands too, even though the “climate for SDM is good” (p.287), “(…) obtaining the commitment of the healthcare professionals indeed seems to be one of the main challenges for active patient involvement in decision-making (p.284)” (van der Weijden et al., 2011). The question whether medical culture within a department influences if and how SDM is implemented was raised by an in-house gynecology resident, Dr. Spinnewijn, at the Radboud Medical Centre in Nijmegen, who started doing her PhD on this topic. Building on the idea that understanding the culture in a medical department could give insight in which factors do facilitate the practice of SDM and which do not, as medical culture plays an important role in how healthcare professionals think and behave (Jaye et al., 2006).
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To study the medical culture in the gynecology department, Dr. Spinnewijn requested to work together with a medical anthropology student, who could take the outsider’s role at the start of her PhD study. As part of my thesis trajectory for the Medical Anthropology and Sociology master, I thus assisted her by doing ethnographic research, looking at the medical culture and trying to understand it in order to see whether the implementation of SDM indeed faces difficulties. We specifically focused on the oncologists within the gynecology department. This is an interesting group to study as their work consists of both surgery and extensive patient contacts (Spinnewijn et al., 2018), and it has been suggested that both sorts of medical interventions are embedded in and bring along different types of medical cultures (Suominem et al., 1997; Katz, 1999). We looked at the actual practices that unfolded, which – we assumed – would reflect the specific culture in that department and show us how SDM is or is not embedded in it.
Studying the medical culture in a gyne-oncology department in relation to SDM has to my
knowledge not been done before. Much research has been done on SDM in oncology practices, as Kane et al. (2014) show in their literature review. However many of these studies only focus on the attitudes
practitioners and patients have towards SDM by interviewing people or conducting surveys (Singh et al., 2010; Pieterse et al., 2009). Examining the medical culture in a gyne-oncology department and how this may affect practices of SDM by doing ethnographic observations is thus of added value.
In this study, I used Bourdieu’s concept of habitus to look at the gyne-oncology’s culture. In her ethnographic research at an emergency department in a hospital, Hightower (2010) defines habitus as “all actions, behaviors, and responses performed by the emergency physician as a part of their day-to-day routines” (p.2). Practitioners acquire these actions, behaviors and responses through a process called
socialization, whereby novices internalize professional values, attitudes, practices and behaviors by – among
others – transmission of the older practitioners (Jaye, 2006). The emphasis on culture in medical
environments and how it is linked to SDM has led me to formulate the following main research question:
“How is the ‘medical culture’ at the gyne-oncology department of a Dutch academic hospital affecting the
practice of shared decision-making principles in daily practice?”
Outline
Having introduced briefly the topic, I now give an outline of the thesis. I start with a chapter giving more insight in the history of SDM, and in what research already has been done on this topic, also looking more in depth at the research on SDM within oncology. I then describe the theoretical framework I used, explaining the concepts of culture, socialization and habitus. I specifically explain how those concepts are used in a medical environment. Next, I turn to the methods section where I explain in detail how I did my fieldwork. I decided to describe my methods quite extensively as I think it has been as important part both for how this thesis came into being and for my own learning process. The findings section starts with an ethnographic vignette describing the practitioners’ decision-making process, which illustrates the five major cultural themes I distinguished during my fieldwork – the ‘centrality of Evidence-Based Medicine’, the ‘search for
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a chapter to each cultural theme, explaining why I believe they are important and how they relate to SDM. Finally, I end my thesis with a discussion and an overall conclusion, where I answer the main research question, namely how the medical culture of this specific department of gyne-oncologists at the Radboud Medical Center in Nijmegen influences the practice of SDM.
The Shared Decision-Making Model
The SDM model has made its way into medical settings in the Netherlands since 2006 (van der Weijden et al., 2011) as a way to put the patient at the center of health care (Stiggelbout et al., 2012). Worldwide, a few changes in the medical field have been driving this shift (Charles et al., 1997). First, the nature of medical practice has changed from predominantly acute to chronic care, whereby the patients want to and can have a say in what their treatment will be, as they may have to live a long time with the disease and the treatment (van der Weijden et al., 2011). Second, giving people a say in the process of decision-making is increasingly seen as ethically and morally right and governments have adopted this idea in their healthcare policies (Ibid). Finally, nowadays patients want more and more autonomy and control in the decision-making process, challenging the physician’s authority (Samra, 1993). This trend reflects a more general tendency, whereby patients challenge practitioners’ knowledge and expertise (Ibid, p.345) and are self-determined to take part in the decision-making process (Ibid, p.342). Indeed, Charles et al. (1997) argue that “SDM is seen as a
mechanism to decrease the informational and power asymmetry between doctors and patients by increasing patients’ information, sense of autonomy and/or control over treatment decisions that affect their well-being” (p.682).
Other decision-making models have dominated the medical field before the SDM model made its appearance (Chalres et al., 1997). First, the paternalistic model was predominant in health care. In the paternalistic model, the asymmetry in the practitioner-patient relationship is very high (Ibid, p.683): the patient is passive, and the practitioner, who is seen as an expert and an authority (Samra, 1993), dominates the medical encounter. To address this asymmetry, the informed decision-making model emerged in medical settings (Charles et al., 1997, p.683). The assumption in this model is that the practitioner possesses all the technical knowledge while the patients have their preferences. Once the technical knowledge is transmitted to patients, the practitioner does not have to play a role anymore in the decision-making process as patients now have both the information needed and know their own preference for treatment. This would place the patient in a position to make the best decision. Even though there is a factor of sharing information in this model, the decision-making process itself is not shared. As a reaction to this, patients have reported that they want to have the knowledge and to be included in the decision-making process, but that they do not want to have the entire responsibility (Beisecker et al., 1990). Rather, they also want to know the practitioner’s
professional opinion. As a reaction, the professional-as-agent model came along, which also addresses the asymmetry in the practitioner-patient relationship, but with the practitioner acting as an agent “making the treatment decision, either assuming that he knows, or having elicited the patient’s preferences for future health states, lifestyle choices etc.” (Charles et al., 1997, p.684). In this model, practitioners thus possess insight in both the technical knowledge and the patient’s preferences, enabling them to make the decision
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alone. However, research showed that both practitioners and patients preferred being involved during the whole process, and so SDM emerged (Ibid.).
SDM – with its emphasis on sharing information, preferences and decision-making during the whole process, minimizing the asymmetry between practitioner and patient – is thus changing the nature of how healthcare decisions are made (Barratt, 2008, p.407). In the last 25 years, the idea that Evidence-Based Medicine (EBM) – where the focus is on whether a treatment works or not by testing it empirically – was the only ‘right way’ to practice medicine, dominated the medical field (Ibid, p.408). The focus of EBM is on randomized trials, with a focus on whether a treatment works instead of how it works, leading clinical experience to be less valuable. This in turn led to the idea that EBM and SDM were not compatible, as EBM did not include patient’s participation (Ibid, p.408). However, Barratt (2008) rather states the opposite, namely that the two approaches are not only compatible, but that EBM is an essential pre-requisite for SDM (p.408), as in SDM the information the practitioner gives to the patient should be evidence-based. Yet, at the same time, the information should also be individualized to the specific patient in order for the patient to decide which option is the best for him or her. This principle matches with the core SDM characteristics defined as by Charles et al. (2012).
Until now, many positive short-term consequences of SDM have been found, such as a greater patient’s commitment to treatment during the whole process and more satisfaction for both patient and practitioners (Hauser et al., 2015). Hack et al. (2006) state that SDM increases psychological wellbeing, physical and social functioning and overall quality of life for patients on the long-term. Based on this information, Hauser et al. (2015) hypothesize that SDM could have positive effects on disease-related outcomes on the longer term (p.669), but empirical research on this is still lacking (Elwyn et al., 2016). Elwyn et al. (2016) have also hypothesized consequences SDM could have on the long-term, not only focusing on positive, but also on negative ones. Negative consequences could be that practitioners could show resistance to the changes occurring and that medical encounters could become more time-consuming. However, they also suggest that SDM could lead to positive disease-related outcomes, which would compensate for the extra time spent in medical encounters and might decrease the burn-out rate among practitioners (Ibid.). In the future, Elwyn et al. (2016) state, it is important to take these possible long-term consequences into account, but for now, the short-term outcomes are so promising that many countries, including the Netherlands, have already decided to include SDM in their healthcare policies in order to make health care more patient-oriented.
The implementation of SDM in the Netherlands has not been easy until now as practitioner’s commitment is lacking (van der Weijden et al., 2011, p.284). Practitioners’ attitudes towards the patients must change as they need to make the shift from the paternalistic model towards the SDM model (Ibid.) Practitioners must also get used to the more time-consuming medical encounters (Elwyn et al., 2016). Besides, patients do not always know that they are allowed to participate (Stiggelbout et al., 2012). Stiggelbout et al., (2012) formulated some best practices to bridge these barriers and enhance the
implementation of SDM. An important one is the use of decision aids, like “pamphlets, videos, or web based tools that describe the options available and help patients to understand these options as well as the possible
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benefits and harms” (p.1). Despite decision aids helping patients to prepare to participate in the decision-making process, they do not guarantee SDM during the medical encounter (Ibid, p.2). Some tools have been designed especially for those encounters, like options grids that practitioners and patients discuss together. Another way to increase the practice of SDM is for practitioners to follow more trainings, which stimulates skills development and behavioral change (Stiggelbout et al., 2012, p.2). In this way, practitioners learn communication techniques to involve patients more (Ibid, p.2; Kasper et al., 2012). Finally, it is important to make patients aware that they are allowed to participate (Ibid, p.2).
Despite the fact that there seem to be many positive outcomes related to SDM, and that best practices exist for SDM implementation, not all barriers for implementation are well understood. One field where the barriers of SDM have been researched somewhat more in depth is oncology. The next section will look in more detail into this field.
SDM in Oncology
Quite some (meta-analytic) research has been done on oncology and SDM (Kane et al., 2014), as it is thought that SDM is difficult to implement in this regulated and guideline-driven field (Pieterse, 2008). Based on a literature review, Kane et al. (2014) state that “implementing SDM in cancer care is often complex, as patients’ treatment choices have serious implications for their health outcomes and quality of life, the evidence supporting many decisions in cancer care is limited or incomplete and individuals differ in how they weigh the trade-offs of different choices” (p.378). Many factors thus increase the uncertainty of both patients and practitioners in the decision-making process. Decisions are difficult as treatment goals differ: some cancer patients choose a less aggressive treatment to have a better quality of life, knowing that the treatment might be less efficacious, while others might choose the safer option accepting that their quality of life might decrease (Kane et al., 2014).
Still, cancer patients stated in interviews that they prefer SDM above other decision-making processes (Pieterse et al., 2008; Singh et al., 2010). Moreover, patients who were more involved in the decision-making process had a higher satisfaction level, a higher level of trust in the practitioners and more confidence in the treatment decision (Kane et al., 2014, p.381). Other research however shows that the practitioner’s attitudes towards SDM vary greatly (Frerichs et al., 2016). Attitudes differed on the extent to which a patient should be involved (Ibid, p.6), and many thought practitioners influenced the patient’s decision too much (Ibid, p.7). Frerichs et al. (2016) found that patient characteristics (cognitive abilities, patient’s attitude towards SDM) influenced whether SDM was applied and that the type of cancer played a role as well (Ibid, p.7). Indeed, if there was too much or too complex information for the patient to
understand, practitioners were reluctant to practice SDM. This also depended on the number of treatment options available (Ibid, p.8). Some practical factors also played a role, like the lack of time and economic factors (Ibid, p.7). Finally, some practitioners also indicated that they worried about patients making ‘wrong decisions’ (Kane et al., 2014, p.380). This variation in attitudes towards SDM, due to different individual experiences and views on this way of decision-making, also shows that a clear definition of this model
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among practitioners in oncology practice is still lacking and that more knowledge on SDM in this complex field would be useful for the implementation (Frerichs et al., 2016).
As already mentioned, above studies were mostly interview-based and did not examine actual medical practice. The current study starts from the assumption that medical culture may play a role in how SDM is perceived and implemented in the gyne-oncology department (Jaye et al., 2006). Some cultural factors might facilitate the practice of SDM and some might not (Ibid.). This is why culture plays an important role in this thesis. The next section will look more in depth into this theoretical concept.
Medical Culture
To understand why medical culture could play a role in the implementation and practice of SDM, I first return to the concept of ‘culture’ in general. In the broadest sense, ‘culture’ is defined as “the knowledge that is learned, shared, and used by people to interpret, experience and generate behavior” (Spradley & McCurdy, 2012, p.2). In this thesis, I will look at a medical setting with the assumption that medicine is seen as a reflection of culture. Indeed, van der Geest and Finkler (2004) argue that in medical anthropology “(…) biomedicine, and the hospital as its foremost institution, is a domain where the core values and beliefs of a culture come into view”.
Some decades ago, medical anthropologists started to describe how medical knowledge and medical practice were not arbitrary, but influenced by culture in every different setting (Lock & Gordon, 1988). Some medical anthropologists went as far as to say that “medicine is not simply a natural phenomenon, but
an artifact of human society” (Hahn & Kleinman, 1983, p.306). Globalization, and with this the transformation of medical settings to a technologized world, led people to believe that there was also a ‘homogenization’ of these medical settings (van der Geest & Finkler, 2004). However, the diversity in medical settings showed how strong the relationship is between medicine and culture, and how this
influences how people behave in the different medical settings (Ibid.). Different researchers have shown that different specialized medical professions each have their own specific culture (Jaye et al., 2006; Katz, 1999; Suominem et al., 1997). This is why each specialized medical profession should be researched on its own.
Suominen et al. (1997) for example studied nurses’ culture. They defined culture as follows:
“Culture finds expression in learned, shared and inherited values, in the beliefs, norms and life practices of a certain group, guiding their processes of thinking, decision-making and action. Past events and the
anticipation of future are both reflected in culture” (p.186). To study the nurses’ culture, Suominen et al. (1997), thus looked at different aspects, such as daily routines, power relationships, gender, clothing, language people use, meaning behind symbols and rituals with the intention to understand the assumptions, norms and values people have and why they engage in certain behaviors. By studying the nurses’ culture in this way, the authors found out how the nurses perceived their role towards the patients and why they would behave a certain way towards them (Ibid.).
As already mentioned, this thesis will look into the practice of SDM in a gyne-oncology department. As culture has such an important influence on medical practice, this thesis is thus written from the
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Socialization
Another important aspect of culture is that it is deeply embedded in an environment (Jaye et al., 2006). This happens through a process called socialization, which is the internalization of values, attitudes and behaviors by a person within a culture (Ibid, p.142). Socialization is a process that doctors also go through during their medical training. Ramennick et al. (2003) even state that the professional socialization of doctors is so strong, that it makes a “life-long imprint on their identity” (p.103).
According to Jaye et al. (2006), “medical education is often described as a form of professional socialization and moral enculturation whereby the profession transmits normative expectations for behavior and emotions to its novices” (p.143). Besides the formal learning objectives that medical students must achieve, informal and even invisible sets of influences also affect how the new doctors are formed. Indeed, medical students internalize everything they see and experience during their education. Socialization thus creates ‘a certain kind of doctor’ depending on the specific environment the training takes place in (Ibid, p.144). This explains why different specialized medical professions also have their own culture due to different forms of socialization per discipline, like for example – as suggested by Katz (1999) – how
surgeons “maintain a distinct distance and secrecy from each other” (p.87) or how, going back to Suominem et al.’s study about nurses’ culture (1997), nurses exercise power over their patients in their relationship with them. It is important to acknowledge that, due to socialization, culture gets reproduced as the new
generations take over the behaviors of their predecessors (Jaye et al., 2006).
Habitus
To research culture and socialization in a hospital setting, it is useful to use Bourdieu’s concept of ‘habitus’. The habitus is a reflection of the lived reality that people experience after being socialized into it (Lo et al., 2008). Habitus is a concept introduced by Bourdieu who defines it as “dispositions and schemas carried in individual bodies that develop from one’s constant exposure to social conditions from one’s structural position in the field” (Lo et al., 2008, p.745). The habitus is thus how group culture and a person’s position in it, mostly unconsciously, shape the way people think, shape their bodies and therefore also shape their actions and behaviors. A person’s habitus consists of his or her thoughts, perceptions, ideas and beliefs about the world.
In the first place, Bourdieu used this concept to explain the reproduction of social class structures and social inequalities (Meinert, 2004). People cannot change easily from social status, as they act according to their habitus, for example by the use of certain clothing, a way of moving or a way of talking that
corresponds to a social class, which does not match with other classes, making it difficult to change one’s social status (Ibid.). This shows that the habitus, the reflection of the culture that people acquire through socialization, is deeply embedded in people (Lo et al., 2008).
Hightower (2010) used Bourdieu’s concept of habitus in her research on medical culture. She conducted a hospital ethnography at an emergency department in a hospital in Michigan in the United States of America. In order to research this culture, she defined habitus as “all actions, behaviors, and responses performed by the emergency physician as a part of their day-to-day routines” (p.2). In this study, she argues
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that on the one hand, the environment shapes an individual’s habitus while on the other hand, the
individual’s habitus in turn also shapes the environment, reproducing many of these structures constantly (Ibid.). In a medical context, this means that the system – like the medical training, the interactions with colleagues or patients, or the rituals in a medical department – shapes the physician’s habitus (Ibid, p.31). In turn, the habitus shapes the system by reproducing all the ways of interacting, the rules or the rituals. In sum, habitus can be seen as a permanent internalization of the social order in the human body and it is important to consider that it is bidirectional, which explains changes in the past and leaves room for changes in the future (Ibid, p.31).
This thesis is written from the assumption that the medical culture in this department influences the practice of SDM and that doctors are socialized into this culture in formal and informal ways. The concept of habitus helps to study the medical culture as it allows to observe concrete behaviors and actions in order to understand how people are shaped by their environment and how they shape their environment in turn. The following chapter describes in more detail which methods Dr. Spinnewijn and I used in our research.
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Chapter II - Methods
The fieldwork took place at the gyne-oncology department at the Radboud Medical Center in Nijmegen. As already mentioned, we started the research project with the assumption that the practices in the medical department were influenced by culture, so Dr. Spinnewijn and I conducted a hospital ethnography in order to study how the gyne-oncologists’ culture in that hospital played a role in the practice of SDM. The fieldwork took place during ten weeks, and was a combination of observations and formal interviews.
For the observations, we used a combinations of methods based on the ‘developmental research sequences’ formulated by Spradley (1980). This stepwise method enabled us to start by gathering data in a broad way at the beginning, while helping us focus more and more during the process by analyzing the data at several points in time. As we processed our data immediately after the observations, we could analyze the data throughout the process, which enabled us to focus more in the next observations and to formulate concrete questions in the formal interviews towards the end. Every three weeks, we had meetings with both Dr. Spinnewijn and my supervisors to get feedback about the previous data collection and analysis, and to discuss further steps in the process.
In the next paragraphs, I will describe the steps in this process in more detail, but I will start with a brief overview of the type of settings I did my research in and of the main actors.
Setting and Actors
The Radboud Medical Center in Nijmegen in an academic hospital in the Eastern part of the Netherlands. The gyne-oncology department within the hospital presents itself as a department with much experience, conducting many surgeries a year putting by the latest scientific research into practice. They distinguish themselves by using some more ‘radical methods’ than other Dutch hospitals, for example to treat ovary cancer. Six gyne-oncologists work at the department, with two residents, two specialized nurses and six general nurses. The exact number of treated patients by these gyne-oncologists is difficult to state, as they do not only treat patients in this hospital, but also in other hospitals.
In order to get insight in the medical culture within the gyne-oncology department at the Radboud Medical Center, it was important to do observations at different times, on different locations, with different actors and in settings with different purposes to get an overview as complete as possible. We attended different kinds of meetings like the weekly departmental meetings, which had the purpose to discuss patients before actual medical encounters with them, or the multidisciplinary meetings, also called the ‘tumor board meetings’, where they discussed the difficult cases with other hospitals and other medical specialists like a radiologist or a pathologist. Besides meetings, we also attended one-on-one patient consultations.
The most important actors in our research were six gyne-oncologists and three in-house gynecology residents. They were present at the different meetings, but we have also observed their medical encounters with patients. Aside from them, we sometimes interacted with an intern, a nurse or a patient in an interview or an informal conversation.
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Step 1 – Broad Observations
In the first weeks of fieldwork, Dr. Spinnewijn introduced me in the department and I did observations to get to know this setting. I learned to know the people, the spaces in which they acted, the objects they used and the (medical) language they spoke.
The first observations we did were exploratory. I took as many notes as possible, even if the observation seemed unimportant for my initial research question. Especially in the beginning, I wrote down many practical aspects of the work and many large descriptions of the spaces. However, as I got used to the setting bit by bit, I was able to shift to more focused observations. As Dr. Spinnewijn started to do
observations as well, we found that, due to our different professional backgrounds, that we observed and noted different findings which often complemented each other. She did observations thanks to her insider’s view that I would not have discovered myself, while my outsider’s view led to some insights that she did not see as she was already too much involved in the setting. For example, without medical knowledge, I
sometimes did not understand whether a treatment was curative or palliative. Later on, this turned out to be an important aspect of whether gyne-oncologists apply SDM or not. On the other hand, I noticed how the gyne-oncologists emphasized towards the patients that an advice was formulated by the entire team. This led us to conclude that uncertainty avoidance played an important role in the gyne-oncologists’ culture, which also played a role in the practice of SDM.
In order to be able to make a first analysis of the data, we structured the data based on Spradley’s ‘descriptive question matrix’ (Spradley, 1980, see Appendix A). This way of structuring the data forced me to think about different aspects of a certain observation, like the objects, space, actors, events or time involved and to write about these aspects explicitly in my notes. We used Atlas.ti, a qualitative data analysis and research software, to analyze the data. Dr. Spinnewijn and I started to code our field notes separately to minimize influencing each other. We then looked at our codes together, merged them, deleted some and ended up with 20 final codes (see Appendix B). We thus made use of Atlas.ti as a tool to rethink all the data and extract the most important themes so far. At this point, we wrote a first fieldwork report, which we discussed in one of our research team meetings with our supervisors.
Step 2 – Focused Observations
For the next set of observations, we decided to focus more on certain aspects. We did this by developing a form we could use to structure and focus observations. This form was based on the final codes we made in Atlas.ti in the analysis of the first step and on our supervisors’ suggestions. We made two different forms for the different kinds of settings where we did our observations: one for the internal meetings and one for one-on-one patient encounters (see Appendix C). We used these forms to focus on certain aspects during the observations, like the ‘patient characteristics’ or the ‘phase of the cancer’. However, we mostly used the forms to structure the data after the observations, as we wanted to stay open to and make notes about other aspects during the observations. We decided to include dimensions of ‘culture’ by Hofstede (2011) to map how culture played a role in both internal meetings and in patient encounters (see Appendix D). In the end,
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we used the dimensions ‘power distance’, ‘individualism vs. collectivism’ and ‘uncertainty avoidance’ as we found them useful to get insights about the medical culture (Ibid.).
We continued doing observations during the following three weeks in multiple settings and with multiple actors. After these weeks, we did a new interim analysis of the data we had gathered. This analysis led to a broad overview of preliminary findings and a list of some data we still needed to gather in selected observations and formal interviews. We wrote a second fieldwork report, which we again discussed with our supervisors in our research team meeting.
Step 3 – Selective Observations
For the ‘selective observations’, we started by improving the operationalization of some elements, like SDM itself (Makoul & Clayman, 2006), but also hierarchy and interprofessional attitudes (Lindqvist et al., 2005). This enabled us to look even more specifically at those elements. We made checklists (see Appendix E) to use during the observations. However, as we felt we were missing aspects during the observations by focusing on the checklists, we stopped using them and instead used the checklists when writing down and reflecting on our field notes, as we had done in step 2.
During the three weeks of selective observations, we felt that we were reaching saturation in the data collection: in the observations we often did not encounter new findings, rather the observations would confirm earlier findings. The only research gap concerned one-on-one ‘new’ patient consultations. As the first consultation is an important moment where practitioners are supposed to also apply the principles of SDM, we decided to focus most on these consultations in the last weeks.
Aside from doing the final observations in the field in this step, we also looked more in depth into guidelines for gyne-oncologists, for example on www.oncoline.nl, to see how much attention is given to the practice of SDM, and to what extent gyne-oncologists ‘are supposed’ to put SDM into practice.
Interviews
Finally, I conducted formal interviews in the last few weeks. I did all the interviews, as Dr. Spinnewijn and I expected that the interviewees would be more explicit about their practices to me as I was an outsider. In total, I conducted nine interviews of approximately 15 minutes each. The interviews took place in someone’s office or in a meeting room at the department. In total, I interviewed five gyne-oncologists, all women with much experience and who had already been working at the department for a minimum of three years. I interviewed one male resident who was in his fourth year of training, and one female resident who was at the end of the trajectory in the sixth year. Finally, I interviewed one specialized and one general nurse, both women who were already working at the department for many years.
We made interview forms with questions inspired on our previous observations, asking for example about their views on SDM in general, but also asking whether they thought their departmental meetings influenced the way they counselled their patients or whether they thought SDM was already implemented well in the department. We made two different interview forms: one for the gyne-oncologists, and one for the people who they work with (see Appendix F). For this last group, we asked for example if they felt
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included in the decision-making process. In the interviews with the gyne-oncologists, we also included two case descriptions based on which they could explain how they would make a decision and how much they would involve a patient in it.
On the one side, the interviews confirmed many of the insights we gained through observations, but on the other side, it was also interesting to see that the gyne-oncologists sometimes had different views on certain aspects than we expected.
Ethical Considerations
Dr. Spinnewijn submitted her research proposal to the research ethics board of the Radboud Medical Center and it was approved before I joined her research project, so I was able to benefit of this ethical clearance.
Dr. Spinnewijn informed the department about her study by sending an e-mail to all the people who were concerned before we started doing the observations. She introduced the topic as an observational study where we would look at the department’s culture and how doctors act and communicate towards patients. We did not explicitly name SDM, as we thought this would influence people’s behavior. In her e-mail, Dr. Spinnewijn asked informed consent to the staff in the department before we started doing observations. We gave identity codes to these different actors in the field to ensure anonymity. Before conducting the
interviews, I asked oral permission to the different participants to interview them. I also asked permission to record the interviews in order to be able to transcribe them later, ensuring the participants I would delete the interviews right after having transcribed them.
Before the patient encounters, the gyne-oncologists introduced me to the patients as a medical anthropology student who was there to observe the doctors. They emphasized that I would not do anything with the (medical) content of the discussion and would then ask if the patient agreed to me being present at the encounter. The research ethics board had decided that the patients’ oral consent was enough as the focus was on the doctors and not on them. When the patients had to undergo a medical examination, the gyne-oncologists would close the curtain in the room so that the patients’ privacy would be protected. I decided not to wear a white coat in these encounters, as I did not want the white coat to be misleading about my role as it could have suggested that I was a doctor.
Reflection
Not only did I benefit from Dr. Spinnewijn’s ethical clearance, but I also got access to the different settings quite easily thanks to her. The patients never denied us access; however, due to conflicting schedules with the interns, we were sometimes not allowed to be present at patient consultations we had intended to attend. I was also denied access once to a meeting with a patient by one of the gyne-oncologists as we had not asked permission to the patient early enough.
At the start of the fieldwork period, Dr. Spinnewijn introduced me to the gyne-oncologists and the residents as ‘a fly on the wall’ in the hope to minimally influence their behavior in the internal meetings or in the patient consultations because of my presence. However, there were still a few moments that one of the
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people made a remark about me, which showed me that they were aware of my presence. Even so, both the gyne-oncologists as Dr. Spinnewijn told me that their behavior was not significantly different than usual.
Finally, the fact that we conducted this research with both an ‘insider’ and an ‘outsider’ was beneficial, as we intended to take advantages of both positions, and that we tried to avoid their pitfalls. Indeed, hospital ethnographies can be challenging because participant observation is rarely possible as the researcher is often neither practitioner, patient nor visitor (van der Geest et al., 2004), which was the case for me. For optimal participant observation, the researcher – according to Wind (2008, p.81) – should be both an outsider, in order “to maintain enough analytical and intellectual distance to undertake observations and analyze and interpret what is going on” (Ibid, p.80), but also an insider, in order “to get an insider’s point of view” and “immerse yourself in daily on-going activities” (Ibid, p.80). Our backgrounds thus covered both roles, which helped with the data gathering and analysis.
The previous chapters covered the theoretical framework and the methods used in this thesis. The next chapter describes the insights we obtained after gathering and analyzing the data.
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Chapter III – ‘A Medical Culture Limiting the Practice of SDM’
Tuesday morning. It is 9:25 and I am sitting against the wall in a small meeting room. With me in the room at that moment is a nurse, who is setting up the meeting which is supposed to start at 9:30. She starts by turning on her laptop, which she places on the corner of the table. It is a square table, with chairs only situated at three sides, as a big screen is hanging on the wall behind the fourth
side. All the chairs around the table are slightly inclined towards this screen, which the nurse is now turning on as well. A resident, who just came in, types in her password on a keyboard and opens a computer programme called Epic – that contains all the patient files – on the screen. While the programme is starting up, the rest of the team enters the meeting room and finds a seat. Five gyne-oncologists are present and take their place in front of the screen. Two nurses are already sitting at their left side in front of their laptop, and two residents are sitting at their right side, ready to control the computer projected on the big screen. It is 9:30 and the meeting is about to start.
The resident clicks on the name of the first patient on the list that consists of all the new patients who have been redirected from other doctors or hospitals to this department. Another screen pops open with some basic information about this patient like the patient’s name, date and place of birth, address, and Body Mass Index (BMI) for example. This patient, Patient X, is a 74-year old woman, lives in a village near Nijmegen and has a BMI of 22. Another place on the screen contains medical information about the patient, like the symptoms and some results of scans or lab tests that have already been done. One of the residents starts to do the casuistry. She sums up all the information she has about this patient with quite some speed. She is interrupted twice: once by a gyne-oncologist who asks for a clarification about one of the lab tests and once by a gyne-oncologist who finishes the resident’s sentence and starts giving a conclusion about how to treat this patient. “This patient has to get this operation”. “Yes, that is what I wanted to say”, replies the resident. She continues with the enumeration of symptoms and refers to some protocols and guidelines that match with Patient X’s symptoms. She ends with a suggestion of how to proceed with this patient: “As the guidelines prescribe, and as she seems to be a fit patient, I think we should advise her to do the operation and after that, start with chemotherapy”. One gyne-oncologist asks if Patient X suffers from any other disease. The resident replies that she has not seen anything about it in the patient’s file. Another
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insights on this: “Last year, a study came out with quite a big sample, where it indeed showed that following this protocol leads to a longer time before the cancer returns. I thus think that this is the right conclusion”. The other gyne-oncologists agree and one of them reminds the resident that she must not forget to ask Patient X if she would agree to participate in a study. The resident finishes the discussion on this case by saying that she will let the patient know what will happen when she meets her this afternoon. One gyne-oncologists tells the nurse: “Do you make sure that Patient X will also get an appointment with the anesthesiologist, with the radiologist and that you give her all the information about the operation?” The nurse makes some notes on her laptop and the team moves on to the second patient. It is 9:35.
The resident continues with the second patient, Patient Y. This patient is 35 and a doctor at another hospital discovered she had ovary cancer as she was starting with an IVF trajectory. As the resident starts doing the casuistry, one gyne-oncologist interrupts right away and takes it over. “I have already seen this patient once” is her argument for this interruption. The gyne-oncologist sums up what she knows about this patient and ends with the following statement: “The patient wanted to have a child, but when I talked to her and told her about the risks, she was hesitating as staying alive could be more important to her than having a child”. Another gyne-oncologist argues: “It is impossible to tell her about all the risks with certainty yet, as we miss some results from the lab tests from the pathologist. If she would not want children at all, then I would not hesitate to advise her to have both ovaries removed. However, I think we can still look at where the limits are to try to make it possible for her to have a child, depending on the pathologist’s results.” The team continues discussing this patient for a while, talking about guidelines and protocols, about how far they can go in this case to leave the possibility for Patient Y to have a child without it being dangerous for her and about how the missing information they need from the pathologist could affect their decision. It seems to me that the gyne-oncologists do not agree right away with each other, whereby some clearly want to follow the guidelines, while others are pushing the limits of these guidelines. I notice that both nurses do not participate in the discussion and that one of the residents tries to make one comment but gets overruled, while the gyne-oncologists continue to discuss Patient Y. In the end, they all consent to one advice as a team, depending however on what information they will get from the pathologist in the multidisciplinary meeting and what the pathologist’s advice will be. They wrap up this discussion as they have found consensus and continue with the rest of the patients. It is 9:45.
An hour later, the team has discussed all thirteen patients they had to discuss. The entire group moves to another meeting: the multidisciplinary meeting. I follow the team to another building and we enter a much larger meeting room where several people are already sitting. In the middle of the room, five tables are facing one side of the room in a U-shape. At that side, six big screens hang on the wall with different information displayed on each screen. I see one screen that I recognize from the meeting before, as Epic is also projected on it. On two other
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screens, I see people sitting in a similar setting in another hospital. Finally, on the three remaining screens, medical information is projected, like CT-scans, tables and lists with medical information. Next to the gyne-oncology team, other specialists like a pathologist, a radiologist and a medical oncologist are present at this meeting. The gyne-oncologists, the residents and the nurses also take place at the table in the middle of the meeting room, while some other people attending this meeting, like myself, take place on chairs at the side of the room.
The meeting starts at 11:00 sharp. One of the gyne-oncologists is the chairman and she has a secretary sitting next to her who takes minutes. As they are discussing all the patients, I notice that the average time taken to discuss a patient is three minutes, whereby the residents do the casuistry again, a gyne-oncologist often adds some information and another specialist answers a question when asked him or her, often using a screen with test results to illustrate an argument. The chairman concludes, and the secretary writes down every conclusion about a patient in the ‘Epic screen’ under a sub-heading called ‘Advice/Policy’.
After having discussed some patients, they start discussing Patient X. The resident recapitulates what has been said this morning at the other meeting and ends with: “We will thus advise her to do the operation and chemotherapy afterwards”. As no other specialist wants to add something to this, they all agree and move on quickly to the next patient, which is Patient Y. After the resident has done the casuistry, a gyne-oncologist takes over and states what they had concluded as a team in the meeting before. She asks the pathologist directly to give the results of the laboratory tests of the sample of body tissue they took from this patient. The pathologist gives an answer and an advice based on this result, which triggers a small discussion between the gyne-oncologists whereby again, the limits of the intervention are discussed. The gyne-oncologist who was more inclined to follow the guidelines in the previous meeting uses the pathologist’s answer as an argument for a more serious intervention, namely removing both
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ovaries, while another gyne-oncologist stresses that there are still possibilities to leave the option of having a child open. They finally stick to their initial advice of removing both the patient’s ovaries entirely for the patient’s safety but one of the gyne-oncologists does emphasize to ask the patient again what she wants and that the other option should be discussed too.
The meeting continues with this high speed of one patient per three minutes in average, as the other hospitals participating in this meeting via the screens also have some patients to discuss. The meeting stops around 12:45. In total 28 patients have been discussed. Everyone leaves the room, heading to a different direction to get on with their day.
In this vignette of a typical Tuesday morning at the gyne-oncologists’ department, I described two meetings the gyne-oncologists attend every week. The first meeting is one where the gyne-oncologists discuss the patients within their own team before having a medical encounter with them. The second is a
multidisciplinary meeting where often some of the same patients are discussed, but with different specialists and other doctors from other hospitals present at the meeting as well.
In this vignette, some important aspects of what I refer to as the ‘gyne-oncologists’ culture’ are reflected, which I will show and argue that they have an influence on the practice of SDM. As discussed earlier, SDM can be defined as “clinicians and patients making decisions together using the best available evidence” (Stiggelbout et al., 2012). Both parties thus have to agree, after having discussed all the options the patient has based on EBM (Barratt, 2008) and the patient’s individual situation and preferences (Charles et al., 1997).
In this vignette, which describes part of the decision-making process, it is striking to see that the patient is not included yet. In the case of Patient X, a patient who has been referred from another hospital, the gyne-oncologists already make a primary decision without involving the patient or without considering the patient’s current individual situation at all. At this point, the gyne-oncologists have not even seen the patient yet, and have thus not yet been able to ask the patient’s opinion about the situation. This is slightly different in the case of Patient Y, as one of the gyne-oncologists already knew the patient. In this case, there is a discussion about the patient, where the patient’s wish is considered by some gyne-oncologists, but where others do want to stick to the protocols, guidelines and EBM, not referring to this wish at all. It thus seems that the different characteristics of SDM as formulated above, are not incorporated in this phase of the decision-making process, as the patient is not yet involved in this process.
In the next sections, I will look at how the aspects of clinical practices and routines, which I refer to as the ‘gyne-oncology culture’, influence the use of SDM by the gyne-oncologists with their patients. This thesis is written with the assumption that medical culture influences how practitioners think and behave
(Suominen et al., 1997), and that medical culture thus also influences how the gyne-oncologists practice SDM in this medical department. It is also important to remember that socialization plays a role in how people internalize a culture and then also reproduce this culture (Jaye et al., 2006). Indeed, mostly in the interviews but also in observations, it became clear that, by the way they are educated and trained, gyne-oncologists, residents and nurses internalize the medical practices and routines in their social environment
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and adopt this behavior as well. Residents explicitly said in interviews that they learn by following the example of gyne-oncologists. The following quote nicely illustrates how residents learn from their role models about how to use SDM in practice, as one resident told me in an interview:
“(…), but that we learn very much from role models, so the more a supervisor uses it [SDM], the more it becomes a thing in our education. I think that we are more trained by the gyne-oncologists’ role model function with a subject like this, than in the education itself. Because you can learn something like this, but if afterwards a whole team of gyne-oncologists ignores it, then it is nice that you have learned, but… I think you learn most in practice”3.
The resident clearly states that people’s behavior in this setting is learned through socialization, and that using SDM depends on how you learn it in practice from your role models – in this case the
gyne-oncologists. For all the next sections, it is important to remember that a particular cultural aspect described is thus internalized by the different actors as well as reproduced.
The five cultural aspects I distinguished based on the analysis of the data are the ‘centrality of Evidence-Based Medicine’, the ‘search for consensus’, the ‘hierarchy’, the ‘pace’ and the ‘practice of SDM and space for individual values’. To illustrate these aspects, I will refer to Patient X and Patient Y throughout the next sections, and I will also illustrate my findings with other examples.
Centrality of Evidence-Based Medicine
Throughout the fieldwork period, I discovered how important EBM is in the gyne-oncologists’ culture. As already mentioned, EBM is an essential pre-requisite of SDM (Barratt, 2008), as it helps to give reliable information to the patient in the decision-making process. However, our observations showed that the extensive use of EBM in this setting also resulted in the fact that the gyne-oncologists valued this type of information more than any other information, like for example the patients’ wishes and opinions.
Overall, in most of the decision-making processes we have observed EBM, protocols and guidelines took a central place. In those cases, like for example in the case of Patient X, there was hardly any discussion about which treatment to do and the patient’s individual situation did not form a part of the discussion in the first phase of the decision-making process. Some national guidelines have been formulated, and the gyne-oncologists all know them in detail and try to stick to them as much as possible. Figure 1 shows a Dutch website (www.oncoline.nl), where all these guidelines are listed, and where it is stated whether the guideline is evidence-based or not. In practice, the gyne-oncologists often referred to these guidelines when making a decision about a patient. In our observations of this website, we concluded that the guidelines only contained medical information and almost nothing about how to involve a patient in the decision-making process.
3 Translation from: “(…) maar dat wij wel heel erg leren door rolmodellen, dus hoe meer je supervisoren dat uitdragen, hoe meer het in de opleiding een ding wordt. Ik denk dat wij meer opgeleid worden door de rolmodel functie van de oncologen in zo’n onderwerp als dit, dan in een opleiding. Want zoiets kan je wel leren, maar als er vervolgens een team oncologen daar lak aan heeft, dan is het wel leuk dat je het geleerd hebt… je leert denk ik het meest in de praktijk”.
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Figure 1. Guidelines per type of gynecological cancer on www.oncoline.nl (2018).
EBM during Meetings
Every time the gyne-oncologists would discuss a patient’s case in their meetings, we observed whether they would get into a discussion before formulating an advice for a patient or not. To illustrate this, I go back to the cases of Patient X and Patient Y described above. Patient X was a patient who, on paper, matched with a certain type of disease, based on her symptoms, the scans and the lab tests. As the patient’s medical situation was very clear, the team formulated an advice for treatment based on an evidence-based protocol without much discussion and without hesitating. Moreover, one of the gyne-oncologists added scientific information by mentioning a study she read, giving more evidence for continuing with the suggested and agreed
treatment. The gyne-oncologists often brought in results from one or another study to back up their opinions. In Patient X’s situation, there was a quick agreement among the gyne-oncologists on how to proceed as they had the appropriate knowledge and the way to treat the patient was obvious for them.
However, I have also seen discussions in meetings, where the gyne-oncologists did not agree with each other, as the following discussion in a Tuesday morning meeting shows:
The gyne-oncologists are talking about a dosage they have to give to a patient for her treatment. They all come up with a different dosage while arguing why they think they are right. One gyne-oncologist says: “Let’s find out, we obviously don’t know it, so let’s look at the
literature”. One of the residents opens an article on the big screen and they all start scanning it. They look at a table and look at what dosage is recommended for this situation, as they all have different views. They compare a few articles with Dutch guidelines on a website and decide to follow the international consensus. (Fieldnotes, Week 5).
This observation reflects once more the centrality of EBM, where the gyne-oncologists are looking to get evidence-based information to base their decisions on. In many situations, the gyne-oncologists would ‘admit’ that they did not have enough knowledge about something to make such a grounded decision. Often, when the patient did not fit into one category as was the case with Patient Y, they could not base their decision on EBM even though they wanted to. They would then search for evidence-based studies to make the ‘best possible decision’ about a treatment.
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Based on our observations, it seems that EBM clearly plays a central role in the gyne-oncologists culture and that it is a major part of their habitus, as it strongly shapes how they act when making a treatment decision. When the patient’s medical situation was clear, they would rely on the evidence-based knowledge they had, but when they were not sure or when their opinions differed, they would look into relevant evidence-based studies to make the ‘best possible decision’ for the patient.
One consequence of thinking and acting from this EBM point of view is that it makes practitioners act purely based on medical insights and forget about the patient’s personal situation. They often do not know a patient yet when discussing her at the first meeting on the Tuesday. This means that they cannot know yet the patient’s individual situation, wishes and opinions, and therefore only base their decision on medical information. They then try to make the – in their eyes – ‘best possible decision’, starting from the situation that the patient is fit enough to undergo a treatment and that the patient also actually wants to be treated. They thus base this decision purely on the protocols and guidelines there are on the type of disease the patient has, which in turn are based on EBM.
This emphasis on EBM, protocols and guidelines also comes back in multidisciplinary meetings:
When discussing a new patient at the multidisciplinary meeting, the resident sums up all the medical information she has about the patient. The lab results were missing this morning, which made it impossible for the gyne-oncologists to make a decision yet, as they did not know if the cancer had already spread to other areas. They thus ask the pathologist for this information right away. He shows some information on a screen and explains the significance by mentioning some markers and explaining what it means. He gives the advice to remove both ovaries based on his findings. The gyne-oncologists listen, one asks a question for clarification, and they then agree on proceeding with the pathologist’s advice (Fieldnotes, Week 2).
In the multidisciplinary meeting too, the patient’s individual situation was rarely mentioned, and the decisions were often only based on medical information. As in the example above, it is an enumeration of medical facts about the patient, and whenever there is a discussion about a treatment, it is usually based on these medical grounds.
The patient’s individual situation is often omitted at the multidisciplinary meetings. An explanation could be that the medical specialists present at these meetings, like the pathologists or radiologists never interact with the patients: their job is for example to analyze samples of body tissues in a laboratory or to analyze patient’s X-ray photography’s. They could be less inclined to take the patient’s personal situation into account than the gyne-oncologists, as they do not know and never will know the patient. They are thus often only able to base their decisions on medical knowledge such as test results, numbers and markers.
A gyne-oncologist I interviewed agreed with the fact that they often do not take the patient’s individual situation enough into account in the Tuesday morning meetings and said:
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“I am brainstorming with a group of people on how we can give the patient more a face during the multidisciplinary meetings, because we decide, we make important decisions, of which I think ‘the patient or the patient’s family might have an opinion about it’, and an example could be – we are still brainstorming now – but to for example ask every patient to make a short film answering a few standard questions. ‘What do you want to achieve?’ for example. Then you have a bit more an image of this patient”4.
In the interviews, all of the gyne-oncologists shared the opinion that the patient’s individual situation must be taken more into account in those meetings. Interestingly, they all mention that they themselves bring in the patients’ individual situation into the Tuesday morning meetings but that they question if others always do it as well. In practice however, only occasionally, when one gyne-oncologist did know a patient, like in the case of Patient Y, the individual situation would come up during the Tuesday meeting. There was more discussion about Patient Y, as she had already been able to give her opinion to one of the gyne-oncologists in an earlier consultation at another hospital. Moreover, this patient did not fit entirely into a protocol. As already shown in the vignette, based on only the medical information, some gyne-oncologists, also supported by the pathologist’s results, argued that both ovaries needed to be removed, while other gyne-oncologists were looking for a way to conserve one ovary for Patient Y, as they knew the patient was still considering having another child. In this case, because the patient had told her opinion, they considered it during the meeting, looking at where the limits were between EBM and the Patient Y’s opinion. This example shows that, even though EBM plays such a central role in the gyne-oncologists’ culture, knowing the patient’s opinion does influence the decision made by the gyne-oncologists. It also shows that, as we have also observed in other cases, some gyne-oncologists are more flexible than others to step outside the boundaries of EBM, and that they are also more inclined than others to take a certain level of risk and listen to the patient’s opinion, whereas others prefer to stick to the protocols and guidelines.
In sum, the discussion and the decision made after the Tuesday morning meetings often do not include any information about the patient’s individual situation, even if the example of Patient X shows that taking this information into account influences the final treatment decision. As the patients they discuss are often referred to them from other doctors or hospitals, the practitioners often do not know how the patients feel about the disease, have not been able to ask the patient’s opinion about a treatment yet and have not presented the various options with their consequences to the patient; yet, they already formulate a treatment plan during these meetings based solely on EBM.
4 Translation from: “Ik ben met een groepje mensen aan het brainstormen hoe we de patiënt wel wat meer gezicht kunnen geven in die bespreking, want wij beslissen, nemen best belangrijke beslissingen, waarvan ik denk ‘Daar kan de patiënt of de familie best een mening over hebben, en een voorbeeld zou kunnen zijn, we zijn alleen nog maar aan het brainstormen hoor, maar om bijvoorbeeld een heel kort filmpje met een paar standaard vragen aan de patiënt te vragen. ‘Wat wil u bereiken?’ bijvoorbeeld. En dan heb je toch als het waren een soort van beeld van die patiënt voor je”.
