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Doctors’ Experience of Becoming Patients and its Influence on their Medical Practice: A Literature Review Mariko Morishita , Junko Iida , Hiroshi Nishigori PII: DOI: Reference:
S1550-8307(19)30549-X https://doi.org/10.1016/j.explore.2019.10.007 JSCH 2436
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Please cite this article as: Mariko Morishita , Junko Iida , Hiroshi Nishigori , Doctors’ Experience of Becoming Patients and its Influence on their Medical Practice: A Literature Review, EXPLORE (2019), doi: https://doi.org/10.1016/j.explore.2019.10.007
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Highlights
When doctors become patients, they experience drastic life changes. (67)
The literature reveals the multidimensionality of their experiences. (67)
Doctors gain insights from their experiences, which impact their medical practice. (83)
Sociocultural, historical, and biomedical aspects of doctor-patients are lacking. (81)
Further research addressing this gap and integrating the aspects is needed. (75)
Article type: Literature Review
Doctors’ Experience of Becoming Patients and its Influence on their Medical Practice: A Literature Review Mariko Morishitaa* Junko Iidab Hiroshi Nishigoric a*
Corresponding Author: Doctoral Program, Medical Education Center, Graduate School of Medicine, Kyoto University Postal address: Yoshida-Konoe-cho, Sakyo-ku, Kyoto Kyoto Prefecture, Japan; Postal code: 606-8501 E-mail:
[email protected] Tel: +81-75-753-9454 Fax: +81-75-753-9339 b
Faculty of Health and Welfare, Kawasaki University of Medical Welfare Postal address: 288 Matsushima, Kurashiki 701-0193, Okayama, Japan E-mail:
[email protected] Tel: +81-86-462-1111 c
Medical Education Center, Graduate School of Medicine, Kyoto University Postal address: Yoshida-Konoe-cho, Sakyo-ku, Kyoto Kyoto Prefecture, Japan; Postal code: 606-8501 E-mail:
[email protected] Tel: +81-75-753-9454 Fax: +81-75-753-9339
Author Biographies Mariko Morishita is a Ph. D student and teaching assistant at the Medical Education Center at the Graduate School of Medicine, Kyoto University, where she studies medical education and medical anthropology. Her research interests include doctors‘ experiences with becoming patients, doctors‘ wellbeing, and undergraduate primary care education. Junko Iida is a professor of anthropology at the Comprehensive Education Center (Faculty of Health and Welfare), Kawasaki University of Medical Welfare, Japan. Her research interests include Thai traditional medicine, local healing practices in northern Thailand, palliative care in Japan, and anthropology education for (future) health professionals. Hiroshi Nishigori is a professor in the Center for Medical Education, Graduate School of Medicine, Nagoya University and is the Visiting Project Leader professor in the Medical Education Center at the Graduate School of Medicine, Kyoto University. His research interests include medical professionalism, medical education within the humanities, and virtue ethics in medical education.
Abstract Purpose: Doctors‘ illness experiences can deeply influence not only their perceptions of illness and roles but also their medical practice. Researchers and doctors have sought to understand what happens when doctors become patients. However, currently, literature reviews focused exclusively on their illness experiences are lacking. This review examines academic literature and combines it with illness narratives (i.e., pathographies) written by doctors to elucidate the unknown about doctors‘ experiences and its subsequent influence on medical practice. Methods: An electronic search of the databases Academic Search Complete, Google Scholar, PubMed, ProQuest, and Ichushi-Web was conducted using relevant keywords. The literature reviewed included studies that described doctors‘ illness experiences or doctors‘ perspectives on their experiences of being patients. Results: Previous studies showed that doctors‘ disease prognoses are generally better than or similar to those of patients belonging to the general population. However, doctors‘ documented illness experiences are multi-dimensional and have several common themes. These include the concept of the ‗medical self‘ (behaving as a doctor despite being a patient) and ‗role reversal‘ (the doctor adjusting to the patient role). The other elements of their experiences include barriers to health care, self-treatment and self-doctoring, presenteeism, and ‗wounded healers‘ (those who can heal others using the wisdom from their illness experiences). Most previous literature has omitted the sociocultural and historical dispositions of doctors and their biomedical perspectives of their own afflictions, even though these strongly impact their illness experiences. Conclusion: Further research that re-contextualises the meaning of illness for doctors is necessary.
Keywords: Illness experience; doctor-patient; illness narratives; literature review
Introduction That doctors should always be healthy is an age-old premise in Western medicine (Edelstein et al., 1984; Fox et al., 2011; Ingstad and Christie, 2001; Jaye and Wilson, 2003; Stanton and Randal, 2016; Thompson et al., 2001). This idea possibly originates from a quote in the Corpus Hippocraticum (as edited in the Roman era) that ‗Doctors should look healthy‘ (Hippocrates-b, n.d.: 993). A quote based on the same premise, ‗Isha no Fuyojoh‘, which literally means ‗Doctors do not care about their health‘ appeared in a Japanese book written in the 18th century and was coined to tease a doctor who fell sick. This quote has been widely used since then and continues to be frequently heard in Japan when doctors fall sick. Therefore, doctors have long been expected to remain healthy. Doctors also take it for granted that they would always be healthy. Ironically, many of them appear to not care about their health (Vincent et al., 1969; Campbell and Delva, 2003). Kay et al. (2008) reported that medical students and doctors are seldom taught how to deal with their own illnesses throughout their medical education and training. However, owing to recent concerns about the psychological, social, and physical well-being of medical students and doctors (Campbell and Delva, 2003; Kemp et al., 2019; Taub et al., 2006; Wasson et al., 2016; World Medical Association, 2015), the influence of the educational environment on learners‘ wellness has been investigated and interventions geared toward improving students‘ and doctors‘ well-being have been implemented by medical schools (Wasson et al., 2016) and training hospitals (Cedfeldt et al., 2015; West et al., 2019) . Therefore, it can be said that doctors, medical educators, and educational institutions have begun to seriously tackle issues related to doctors‘ health and well-being.
Another well-known but contradictory idea persists that doctors should become patients at least once to be able to understand their patients (Rosenbaum, 1991; Murakami and Hinohara, 2003). This alludes to the notion that without experiencing patienthood, doctors cannot truly understand what it means to be ill, despite seeing patients almost every day. Thus, this idea suggests that there is a disconnect between the doctor and patient until the doctor falls ill.
These themes have long garnered the interest of doctors and researchers. In his book, Sickness and Healing: An Anthropological Perspective, the American epidemiologist and anthropologist Robert Hahn points out that ‗the written accounts in the genre of doctors‘ illnesses had been seen for over thirty years‘ (Hahn, 1996: 235). In 2018, there are far more illness narratives written by doctors and researchers than in the past, along with guidelines and guidebooks for when doctors become ill. Nevertheless, as there are no literature reviews on the illness experiences of doctors and how these experiences influence doctors‘ medical practice, it is difficult to determine how to further explore this topic.
We reviewed the existing literature on doctors‘ illness experiences to deepen our understanding of how these experiences influence doctors‘ medical practice. We also reviewed illness narratives (both articles and pathographies) by doctors and compared them with academic studies. These reviews lead us to highlighting the necessity of further research on doctors‘ experiences as patients and how these experiences influence their medical practice.
Method Search strategy We reviewed literature published until 2017 on the electronic databases Academic Search Complete, Google Scholar, PubMed, ProQuest and Ichushi-Web; although owing to its own limitations, the fifth database, which is an electronic database for Japanese medical journals, only included papers published between 1961 and 2016. The keywords used were ‗doctors become patients‘ and ‗doctors as patients‘ for Google Scholar and ‗doctors become patients‘ and ‗physicians become patients‘ for Academic Search Complete, PubMed and ProQuest. For the Japanese database IchushiWeb, two Japanese phrases, ‗Isha ga byo-ki ni natta toki (when doctors get sick)‘ and ‗ishi ga kanja (doctors are patients)‘, were used. We also searched the reference lists of the retrieved articles. Only those English and Japanese articles of which we could obtain the full texts were included in the review.
Data extraction and analysis A total of 1117 works, consisting of articles and books, were initially retrieved by the electronic search. Of these, 186 were selected for having a title relevant to our research questions: 1) What happens to doctors when they become patients? 2) How does a personal experience with illness influence one‘s medical practice? We read the abstracts of these articles in order to determine whether or not they should be included, based on the following criteria. Inclusion criteria: original research articles and literature reviews, dissertations for master‘s or doctoral degrees and books comprising original research articles. Exclusion criteria: guidebooks, guidelines, editorials, letters on doctors‘ illnesses; recommendations for ill doctors and works from the perspectives of doctors caring for ill medical professionals. Furthermore, to elucidate the perspectives of doctors rather than medical students, articles detailing the latter‘s experiences were excluded.
After applying the inclusion and exclusion criteria, we extracted 30 articles and 2 books relevant to our research questions. A hand search of the reference lists of these articles and books retrieved 15 additional articles. The electronic search results also included illness narratives (10 articles and 2 books) written by doctors having the experience of being patients. A hand search of the references of these narratives further yielded two articles and four books. Thus, the final number of documents included in this review was 65, which includes 57 articles and 8 books.
Results In the first section of the results, we review the academic studies of doctors‘ illness experiences. In the second section, we review the illness narratives to enrich our understanding of the academic studies. By combining a study of narratives with that of formal studies, a deeper understanding of physicians‘ illness experiences is expected.
Academic studies of doctors‘ illness experiences Good prognosis for doctors‘ health problems, excluding mental illness The mortality rate of doctors has been found to be lower than that of the general population (Frank et al., 2000; Tyssen, 2007; Kay et al., 2008; Tarkowski et al., 2016), and epidemiological data show that the prognosis of doctors‘ diseases is relatively better than (Ridker et al., 1992; Frank et al., 2000; Tomizawa, 2001; Deng et al., 2006; Shen et al., 2014) or similar to that of the general population (Hsu et al., 2015). These studies explain that the possible reason for better prognoses in doctors is that the presence of symptoms causes an ailing doctor to fear that he or she has a serious disease, thus prompting him or her to seek immediate health care (Ridker et al., 1992; Shen et al., 2014). Shen et al. (2014) proposed that health care accessibility is another mechanism that may provide such better prognoses, although it warrants further research.
On the other hand, the likeliness of doctors acquiring diseases has also been highlighted by researchers. Hsu et al. (2015), who conducted a study in the Department of Public Health and Health Service Administration of China Medical University in Taiwan, found that female doctors have a higher risk of advanced cancer at diagnosis. Furthermore, in contrast to the better prognosis of physical diseases, there is a higher prevalence of suicide and mental health conditions among doctors because of their high levels of work-related stress (Tyssen, 2007; Tarkowski et al., 2016; Spiers et al., 2017). Burnout, which is a manifestation of mental distress, is particularly of concern. While burnout among medical professionals is well-researched, it is marked by a lack of definitional clarity, low validity of diagnostic criteria, and a categorical confusion between burnout and depression (Bianchi et al., 2017). As the objective of this
review is to explore the overall experience of doctors when they become patients rather than any specific symptoms or diagnosis, this article does not provide detailed information on the condition of ‗burnout‘ among doctors.
Medical self and role reversal When doctors become aware of their symptoms, even the subtle ones, they begin to consider a differential diagnosis. Robert Hahn (1996) analysed 14 doctors‘ pathographies and described how they initially reacted to their illnesses. He found that a few doctors regarded themselves as merely medical cases and even presented themselves in this manner to colleagues (Hahn, 1996: 237). Robert Klitzman (2008), a psychiatrist and an anthropologist, interviewed 70 doctors in the U.S. who had undergone the experience of being patients. He too found that doctors often approached their own illnesses as if they were examining a patient (as opposed to themselves). According to Klitzman, they seemed to be able to distance themselves from their own ill bodies, viewing them from the vantage point of a doctor. Klitzman quoted the term ‗medical self‘ from one of the interviews and used it to refer to the act of behaving like a doctor even when the doctor is a patient (Klitzman, 2008: 58).
During the illness, this medical self automatically applies medical knowledge and experience to symptoms, which can lead to denial and a delay in diagnosis and treatment. Klitzman (2008) referred to this phenomenon as ‗postresidency disease‘ as he noticed that doctors were prone to deny or minimise their own illnesses after their residency training (Jaye and Wilson, 2003; Klitzman, 2008: 27–28; McKevitt and Morgan, 1997; Stanton and Randal, 2016). This is contrary to ‗medical students‘ disease‘ (Moss-Morris and Petrie, 2001), which refers to the condition of medical students suffering from intrusive thoughts of serious diseases they study about.
However, Tarkowski et al. (2016), who examined literature by authors from Poland and various Western countries on the functions of doctors as patients, reported that subtle symptoms can trigger the ‗catastrophic thinking‘ characteristic in medical students‘ disease, even in doctors. This causes doctors to deny their own illness (Hahn, 1996; Tarkowski et al., 2016). Taken together, doctors‘ medical knowledge and experience, along with the medical self, can ironically make them suffer in silence instead of relieving or solving their health problems.
Ingstad and Christie (2001), anthropologists from Norway, proposed that the reason doctors deny their illness stems from sources other than the medical self, such as the fear of being seen as ‗squeamish‘ as well as the fear of making mistakes in the diagnosis in front of colleagues. Doctors often try to be superhuman, not only for their patients but also for the members of their own community. This desire for invulnerability among doctors has been reported in other studies as well (Jaye and Wilson, 2003; Kay et al., 2008; Klitzman, 2008: 33). There is also an external pressure
from patients and communities for doctors to always be healthy (Edelstein et al., 1984; Thompson et al., 2001; Jaye and Wilson, 2003; Kay et al., 2008; Stanton and Randal, 2011). Doctors are urged to ‗not be a burden on their colleagues or others‘ (Jaye and Wilson, 2003; Kay et al., 2008; Klitzman, 2008: 41). All these factors can enhance doctors‘ denial of their illness. From the beginning of his/her illness and through the experience, the doctor‘s life is influenced by the medical self, the culture among doctors and the overall medical system.
The expectations from society, their communities and even themselves are deeply ingrained in the lives of doctors; however, becoming patients can force a transformation, which past studies have referred to as ‗role reversal‘ or ‗role dilemma‘. This role reversal is considered a highly difficult transformation because the roles of doctors and patients are considered quite distinct and difficult to merge (Ingstad and Christie, 2001; McKevitt and Morgan, 1997). Doctors often suffer from role reversal, which leaves them confused regarding how they should behave—as a doctor or as a patient—during their consultations (Hahn, 1996; Klitzman, 2008). Anthropologist Jaye and general practitioner (GP) Wilson, who studied GPs‘ experiences of illness in New Zealand, termed this confusion ‗role ambiguity‘. These ‗doctorpatients‘ also address how difficult it can be to define their roles during consultations (Jaye and Wilson, 2003). According to Hahn (1996) and Jaye and Wilson (2003), doctor-patients often seek to become the ‗good patients‘ they have encountered in their practice. Moreover, some try to simply obey doctors‘ orders because they believe in the ancient model of the doctor-patient relationship wherein patients must obey doctors‘ orders and doctors behave paternalistically. In essence, they find it difficult to ‗surrender control and competence‘ (Jaye and Wilson, 2003).
However, other studies have shown that doctors do not cling to the controlling role. For example, McKevitt and Morgan (1997) found a number of different types of doctor-patient relationships based on interviews with doctors who had recently become ill. They reported that some of the interviewees willingly strove to become ‗mere‘ patients. Ingstad and Christie (2001) showed that doctors at times wished someone else would take over the responsibility of making important decisions for them. Fromme et al. (2004) noted in their qualitative study investigating doctors‘ strategies of seeking medical care that doctor-patients perceive their roles as unfixed and situational along a continuum ranging from emphasising the doctor‘s role to emphasising that of the patient. Doctors might be willing to become ‗pure‘ patients in some situations, and might try to maintain the doctor‘s role in others. Accordingly, doctor-patients have varied roles, and many experience difficulties in establishing their role when managing their own illness. Besides role determination, which fits into the social and psychological domains of the doctors‘ illness experience, doctor-patients often physically experience the patients‘ perspective, such as when hospitalised. In this situation, they begin to recognise what the hospital environment is like for their patients. Gyntelberg et al. (2006)
investigated whether doctors and nurses in Denmark who had been hospitalised were satisfied with their environment and amenities during hospitalisation. Through the questionnaires they administered as part of the study, they found that the respondents were generally satisfied with the information shared by and communication from medical professionals, while 20–30% were dissatisfied with hospital amenities, such as toilets, bathing facilities and beds. According to Gyntelberg et al. (2006), the adoption of a patient‘s perspective can lead to an improvement in medical care and hospital facilities.
In summary, the medical self is embedded in the minds of doctor-patients and, therefore, doctor-patients must deal with role reversal and role determination. They also gain patients‘ perspectives regarding their work environments through the experience.
Barriers to health care Besides the medical self and difficulties with role determination, there are a number of obstacles that doctor-patients must overcome to obtain medical care. Collectively, these obstacles can be called ‗barriers to health care‘, and they are one of the most explored areas in research on doctors‘ illness experiences. These barriers are embedded not only in the doctor-patients themselves but also in their surrounding medical culture and systems. One of the barriers to accessing formal health care is informal consultations, also called ‗corridor consultations‘, with colleagues or friends who are doctors (Baldwin et al., 1997; Kay et al., 2008). Although Percival‘s medical ethics, published in 1803 (Pellegrino, 1986, considered it to be one of the origins of the ethical code of the American Medical Association), established that doctors should not treat themselves or their close relatives, it is well-known that doctors tend to informally consult their colleagues and doctor friends and are generally not reluctant to engage in self-doctoring. According to Jaye and Wilson (2003), informal consultations were found to be a part of doctors‘ obligations to their own community in New Zealand, a notion that might stem from the professional courtesies outlined by Hippocrates in ancient Greece (Hippocrates-a, n.d.: 581).
However, several studies have documented that institutions and colleagues often do not support doctors who are unwell (Thompson et al., 2001; Kay et al., 2008), which can make it impossible for them to engage in corridor consultations or even casual conversations about their health issues. According to Thompson et al. (2001), the professional culture may prevent doctors from discussing their health with each other. Stanton and Randal (2011)
reported that doctors may hesitate to ‗step into‘ the mental health issues of colleagues to avoid humiliating them; as a result, they may ‗draw away‘ from these issues.
In addition to corridor consultations, Kay et al. (2008) reported that the cost of insurance, taking time off and doctors‘ fees are other concerns of doctor-patients that act as barriers to health care access, even though doctors are generally assumed to be members of a privileged socioeconomic group. Their insider knowledge of medical providers is also an obstacle to their becoming patients as they often know which providers have limitations in medical care or have poor reputations (McKevitt and Morgan, 1997; Kay et al., 2008). Time is another important factor in doctors‘ use of health care services; many doctors use their professional obligations as a reason to not take days off to consult their own GPs (Foster and Anderson, 1978; Kay et al., 2008; Jenkins, 2017). Some scholars assume that having a GP may influence doctors‘ well-being and have surveyed the prevalence of GP registration among doctors. Kay et al. (2008) found that this prevalence ranges rather widely, from 21% to 100%. Some studies have noted that many doctors do not consult their own GPs despite having registered with them (Jaye and Wilson, 2003; Kay et al., 2008). Furthermore, whether or not doctors have their own GPs largely depends on the health care system and medical services in their region (Kay et al., 2008); this aspect of accessibility has not been discussed with much nuance in previous studies.
Self-treatment/self-doctoring Besides barriers to health care, self-treatment/self-doctoring is another well-researched area of doctors‘ illness experiences. In fact, self-treatment is rather common among doctors, which has been confirmed by studies conducted in countries such as Australia (Davidson and Schattner, 2003), Hong Kong (Chen et al., 2008), Finland (Töyry et al., 2000), Germany (Schulz et al., 2017), Ireland (Clarke et al., 1998), Ghana (Boateng, 2009), Nigeria (Agaba et al., 2011; Fadare and Desalu, 2014), Malaysia (Ali et al., 2012), Norway (Rosvold and Tyssen, 2005), the U.S. (Rosen et al., 2000; Krall, 2008) and the U.K. (Baldwin et al., 1997; Forsythe et al., 1999). A literature review of this theme arrived at the same conclusion (Montgomery et al., 2011). Despite this, as previously noted, self-treatment and treating significant others is not recommended by most codes and guidelines, such as the Good Medical Practice guidelines of the U.K. (British Medical Association, 2010; General Medical Council, 2013), the ethical code of the American Medical Association (American Medical Association, 2016), the brochures produced by the Ministry of Health, Labour and Welfare in Japan (Japanese Ministry of Health, Labour and Welfare, 2018) and similar organisations in other countries, such as Australia (Medical Board of Australia, 2014) and Canada (The College of Physicians and Surgeons of Ontario, 2016). This admonition stems from concerns about compromised objectivity and the fear of a possible development of drug
dependence in self-treating physicians (General Medical Council, 2016; The College of Physicians and Surgeons of Ontario, 2016). Nevertheless, self-treatment continues to be encouraged by colleagues (Kay et al., 2008) and may be accepted in isolated areas (Jaye and Wilson, 2003), in case of emergencies (American Medical Association, 2012) or for trivial diseases (Kay et al., 2008).
The reasons for self-treatment/self-doctoring may be similar to those identified as barriers to health care access for doctors. In a mail survey among internal medicine residents in the U.S. on the reasons for self-doctoring Rosen et al. (2000) found that residents‘ unpredictable working hours prevented them from accessing health care services (Montgomery et al., 2011). Ali et al. (2012) also investigated the reasons predisposing doctors and other health professionals to self-medication in Malaysia. Respondents answered that the primary reasons were ‗familiarity with treatment options‘ (McKevitt and Morgan, 1997; Montgomery et al., 2011) and that they did ‗not have a primary physician nearby‘.
Several studies noted that confidentiality (Kay et al., 2008; Montgomery et al., 2011; Kay et al., 2012) and future career concerns (McKevitt and Morgan, 1997; Fox et al., 2011; Montgomery et al., 2011; Bianchi et al., 2016) prevent doctors from consulting their GPs or other doctors. Most doctors understand that confidentiality of their personal information cannot be maintained, especially when they seek help in the hospital or clinic where they work (Bianchi et al., 2016).
Confidentiality concerns is a particular issue in the context of psychological diseases, such as depression, as well as alcohol and drug dependence, more so than for physical diseases (Thompson et al., 2001; Bianchi et al., 2016). Bianchi et al. (2016), researchers of primary care and population health in the U.K., explored senior doctors‘ attitudes toward mental illnesses. They found that having a mental illness could leave a huge impact not only on doctors‘ health but also on their future career prospects. According to Bianchi et al. (2016), doctors with mental illness may be viewed as being unfit to work, particularly in terms of decision-making in medical practice. Indeed, in the U.K., if doctors are marked as having a mental illness, they may lose their licence to practise medicine. This is one of the main reasons doctors with mental illness try to hide their health conditions and worry so much about confidentiality. The stigma of mental health problems can also influence their attitudes toward disclosing the illness (White et al., 2006; Spiers et al., 2017). Using a questionnaire survey, Hassan et al. (2009) found that Canadian psychiatry residents would only disclose a mental illness if they had informal support. In contrast, physical illnesses do not appear to influence the perceptions of a doctor‘s ability to work, so long as the doctor recovers. Still, even doctors with physical illness have concerns about confidentiality and fear disclosing their medical conditions (Kay et al., 2008).
Considering the reasons for self-treatment/self-doctoring, doctors appear to be besieged by an environment and culture that encourages them to treat themselves. Still, some doctors are reluctant to engage in self-treatment/selfdoctoring. Several studies revealed that doctors show both a preference and a reluctance for self-treatment and selfdoctoring (Rosen et al., 2000; Jaye and Wilson, 2003; George et al., 2014), with the latter being dominant. According to Jaye and Wilson (2003), their study participants were reluctant to provide care for themselves or their close relatives, although one participant reported a preference for self-managing her care because she did not trust the abilities of other doctors.
Presenteeism ‗Presenteeism‘, or the act of working while ill, is a notable problem among doctors (Davidson and Schattner, 2003; Anupam et al., 2012). The rate of presenteeism was especially high among young doctors (Baldwin et al., 1997; Anupam et al., 2012). The reasons for presenteeism include a feeling of responsibility toward patients‘ care and a strong obligation to one‘s colleagues (Anupam et al., 2012). In a qualitative study of junior doctors‘ illness experiences, Fox et al. (2011) found that doctors generally perceived absence due to illness as a ‗failure‘ because of strong expectations of competency and competitiveness within the medical culture. In this way, the reasons for presenteeism are similar to those of self-treatment/self-doctoring—while it is not explicitly encouraged, it is implicitly required by the culture, despite its risk to the health of both patient and doctor.
Wounded healers: Working after experiencing patienthood As compared with studies on role reversal, barriers to seeking help and self-treatment, there are few articles on doctors‘ experiences of working after a sick leave. Hahn (1996: 259-260) provided examples of the discerning selection process for healers in ethnomedicine and of psychoanalyst training to show that there are analogies between disabled doctors and healers in ethnomedicine. Traditionally, in ethnomedicine practices around the world, healers were often chosen to work in the field because they had experienced severe illnesses (Foster and Anderson, 1978; Hahn, 1996). Their experience of illness is considered a source of wisdom and knowledge; this is different from Western medicine, where candidates in relatively good health and with good grades apply to medical schools of their own volition (Sinclair, 1997). Doctors who study Western medicine do not have explicit training and support systems for utilising their illness experience as traditional healers do. Klitzman (2008) introduced a similar paradigm called the ‗wounded healer‘. Initially proposed by psychoanalyst Carl Jung, this term refers to doctors who experience an illness and ‗acquire deep wisdom‘ after
recovering from it (Klitzman, 2008). When doctors recover from their illnesses and return to work, there are likely to be shared phenomena between them and these ‗wounded healers‘ of ethnomedicine.
According to Ingstad and Christie (2001), once doctor-patients return to work, they become much closer to their patients. However, they also noted that doctors remained doctors; the study participants realised they could not become ‗co-patients‘ who shared the same perspectives. Fox et al. (2009) found that doctors who had been patients showed improved communication skills and tried to be more involved in patients‘ care as they felt greater sympathy for and empathy with patients as a result of their experiences.
Through illness experiences, doctors can better understand the predicaments of patients and may liberate themselves from the medical culture, full of competition and its varied requirements. However, Fältholm (2007), in a qualitative study of physicians on long-term sick leave in Sweden, found working as a doctor remained important for several participants. Nearly all participants wanted to return to work as full-time doctors. Similarly, according to Klitzman (2008), doctors continue to remain doctors—even after they retire. As the professional identity is pervasive in doctors‘ lives, they are often eager to work in the same way they did before becoming ill. However, Hahn (1996: 254-256) reported that the doctors who experienced patienthood were aware of the changes in their perceptions toward the medical profession and care. Indeed, some doctors became more aware of how clinical medicine based on natural science, such as biology and biochemistry (so-called ‗biomedicine‘), were tools for healing patients (Hahn, 1996: 256). Doctors‘ spirituality and religious beliefs were occasionally influenced by ‗mystical‘ experiences that occurred during the illness; as a result, some began to believe in god/gods or the supernatural (Klitzman, 2008: 241-253). Accepting the experience of being ill and feeling empathetic toward their patients can free doctors from the notion that they must always be tough and emotionally distant from their patients (Fox et al., 2009; Ingstad and Christie, 2001).
Personal illness narratives Within doctors‘ illness narratives, including pathographies, we observed several aspects not documented in academic studies on doctors‘ illness experiences. These include personal accounts of illness-related experiences, such as their bodily sensations as patients (Hosokawa, 1977; Mandell and Spiro, 1988; Onji, 1989; Couper, 1994; Maekawa, 2008; Haver, 2010; Hariri and Hay, 2016), social relationships inside and outside of medical services (Mandell and Spiro, 1988; Murakami and Hinohara, 2003; Jones, 2005; Hariri and Hay, 2016), influences of the illness on their own medical education and work (Mandell and Spiro, 1988; Jones, 2005; Brook, 2011; Cappell, 2011; Murakami et al., 2015), their
reflections on patients they saw while working (Mandell and Spiro, 1988; Anonymous, 2013; Gold et al., 2016), lessons they learnt (Mandell and Spiro, 1988; Murakami and Hinohara, 2003; Jones, 2005; Takaku, 2007) and a criticism of the medicine and medical care they were provided with (Onji, 1989; Murakami and Hinohara, 2003; Jones, 2005; Takaku, 2007; Haver, 2010). The illness narratives published in scientific journals tended to advocate for patients‘ perspectives and quality improvement within the scope of the journal (Takaku, 2007; Takeuchi, 2011a; Takeuchi, 2011b). The illness narratives in edited books or pathographies by doctors with illness experience were mostly didactic, although longer works provided deeper insights. In this sense, pathographies, rather than article- or short story-based illness narratives, were filled with information and perspectives on doctors‘ illness experiences. Wada (2003), a Japanese researcher in nursing, investigated Japanese pathographies and found that stories were typically written with didactic intentions in mind, allowing authors to reflect on the life values or meanings they had cultivated. Hawkins (1999) pointed out in her study of pathographies in the U.S. that ‗the intent and the tone of pathographies‘ are largely influenced by time and context, which accords with the illness narratives retrieved as part of our literature review. Therefore, doctors‘ illness narratives have the possibility of enlightening us about both the internal sphere of doctor-patients, such as the values and meanings of their lives, and the external sphere, such as the historical and sociocultural aspects of the experiences that are seldom dealt with simultaneously in academic literature.
Although illness narratives are undoubtedly worth analysing, these have several limitations. For instance, some parts of a pathography may be fabricated or overly poetic, and occasionally, authors‘ intentions could be commercial (Aronson, 2000). These facts can distort or influence the descriptions of the doctor-as-patient experience.
Discussion The existing literature illustrates how doctors‘ afflictions result in them changing their perspectives about themselves and others through their experiences of becoming patients. Academic literature has explored these issues qualitatively and quantitatively, not only in the field of medicine but in other fields too, such as sociology and anthropology. Doctors‘ experiences as patients differ from those of the general public because they navigate between their medical selves, role reversals and barriers to health care embedded within the medical system and culture. Doctors often engage in selftreatment, despite the prohibitions against this in ethical codes as well as presenteeism and even when they know it is not advisable from the perspective of risk management. The theme ‗doctors as wounded healers‘ is both ancient and contemporary, allowing comparisons between modern Western medicine and traditional ethnomedicine. Altogether, doctors‘ illness experiences are treated mainly as problems or obstacles in academic studies, while better prognosis of
doctors‘ diseases and lower mortality in the epidemiological studies explain that medical knowledge, awareness of symptoms, and easier access to health care could be beneficial for doctors; moreover, the concept of the ‗wounded healer‘ tells us that doctors can learn from their own patienthood experiences and gain wisdom.
It is a somewhat one-sided oversimplification to say that being a doctor is either beneficial or disadvantageous when one becomes ill, as doctors‘ illness experiences can be multifaceted. Studies by Hahn (1996) and Klitzman (2008: 44) have illuminated the sociocultural aspects of doctors‘ experiences. Both authors conducted their studies in the U.S. and pointed out changes in doctors‘ perspectives toward their societies, environments, relationships and spirituality through their experience of becoming patients. In addition, they shed light on the unique culture and ethos of the U.S. that influenced those experiences. The sociocultural aspects of illness experiences have also been well-described in studies from other disciplines. For example, American anthropologist Robert Murphy, who described his experience of limb paralysis, spoke at length about the influence of the illness on his life and perspectives of the American society and compared it with his anthropological studies in the Amazon (Murphy, 2001). Another example of a sociocultural analysis of illness comes from Canadian sociologist Arthur Frank, who described his experience as a patient with prostate carcinoma and how his family and medical professionals perceived his disease (Frank, 2002). Both authors analysed their experiences emotionally, privately, and academically from the perspectives of their respective disciplines—cultural anthropology and sociology. Although their works are considered autoethnographies and differ from objective investigations by other researchers, these can also be considered academic studies in their own right. As compared with these autobiographies, most previous studies do not document the full influence of illness on doctors‘ lives. Previous research on doctors‘ illness experiences also provides us with an insight into how contemporary medical cultures and systems strongly influence these experiences. However, the phenomena described and the analyses conducted range from the specific to the superficial and present moments that can be observed only in medical settings. The theme of doctors‘ illness experiences can be explored by considering a variety of dispositions of each doctor-patient. Even though a few previous studies showed that the working experiences of doctors affected their perceptions of diseases (Hahn, 1996; Klitzman, 2008; Tarkowski et al., 2016), the experience of each doctor-patient as a medical student and a doctor were seldom described. The experience of a doctor-patient who is a cardiologist treating patients with myocardial infarction may be different from the experience of the same disease for another specialist. A doctor-patient with a family member who suffered from the same disease as him or her may be more deeply afflicted. Therefore, each doctor‘s education and training in medicine and personal experience should be considered when analysing illness experiences.
Aside from these socio-cultural and individual contexts, the biomedical viewpoints of each doctor-patient toward his or her disease are also lacking in most existing academic studies. This lack exists despite the fact that the medical self (which has an inherently biomedical perspective) is a prominent characteristic of doctor-patients. These previous studies only differentiate between doctors‘ diseases based on whether they are mental or physical, even though any disease involves various processes that influence the experiences. A look at general illness narratives clearly demonstrates that each disease—whether acute or chronic—is accompanied by a specific experience of suffering (Aronson, 2000; Hawkins, 1999). Therefore, the illness narratives of doctors meticulously describe the diseases and bodily sensations that they experience from biomedical perspectives (Mandell and Spiro, 1988; Rosenbaum, 1991; Maekawa, 2008). For example, one pathography showed that a doctor diagnosed with cancer imagined the cancer cells spreading throughout his body, as per his pathological knowledge (Rosenbaum, 1991). Thus, disparities may exist between the descriptions of doctors‘ experiences in studies by academics and in their own illness narratives.
The reason that the accounts of academic studies tend to omit the sociocultural and individual contexts and biomedical perspectives of doctors‘ experiences may be Western medicine. As Foucault (1963) indicated in Birth of the Clinic, which discussed the rise of contemporary Western medicine after the French Revolution, Western medicine has prioritised observation, experiment, objectification, materialisation and generalisation, while ignoring the more detailed sociocultural and individual contexts. Another potential reason for the neglect of sociocultural and individual contexts and biomedical perspectives by previous studies is that most authors are medical professionals or are strongly associated with medical fields. As such, these contexts and perspectives may be invisible to them, such as water is to fish—a common criticism against native anthropology in which native researchers investigate their own communities (Kubica, 2016). Moreover, the descriptions of the biomedical aspects of the experiences may have been avoided even in studies conducted by sociologists and anthropologists because biomedicine has long been considered a topic that only doctors can appropriately describe (Mol, 2002, p. 8).
Recently, an increasing number of qualitative studies in the medical field as well as collaborative research involving other disciplines have begun to unravel a tradition of positivism in Western medicine (Bradley et al., 2007; Green and Britten, 1998; Williams et al., 2019). This has opened windows for examining different aspects of doctors‘ illness experiences and enriched our understanding of them. On the other hand, the personal illness narratives of doctors in this review reveal things that have been overlooked in previous academic studies—including their individual contexts, biomedical perspectives, as well as senses and emotions. Considering the socio-cultural aspects of doctors‘ illness experiences is intertwined with various factors, as mentioned above. Therefore, further research should be conducted
from multidisciplinary perspectives to examine multiple resources, including narratives of doctors who became patients and their individual contexts.
Acknowledgements:
Declaration of Conflicting Interests: The authors declare no potential conflicts of interest with respect to the research, authorship or publication of this paper.
Funding: This research did not receive any grant from funding agencies in the public, commercial or non-profit sectors.
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