JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 1, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0141
Original Articles
Terminally Ill Patients as Customers: The Patient’s Perspective Katharina Seibel, MA, Sara Celestina Valeo, MD, Carola Xander, MTh, MA, Sandra Adami, Dipl Psych, Thorsten Duerk, MD, and Gerhild Becker, MD, MTh, MSc Palliative Care
Abstract
Background: Consumerism in health care defines patients as self-determined, rational customers. Yet, it is questionable whether vulnerable patients, such as the terminally ill, also fulfill these criteria. Vulnerable contexts and the patient’s perspective on being a customer remain relatively unexplored. The present study addresses this research gap by analyzing terminally ill patients’ views on being customers. Aim: To explore the ways in which patients in palliative care refer to themselves as patients/customers, and how the patients’ concepts of self-determination are related to their attitudes toward the patient/customer role. Design: Qualitative interviews were conducted. Data were analyzed in three steps: narrative analysis, thematic content analysis, and typology construction. Setting/Participants: Researchers recruited 25 patients via the Department of Palliative Care, University Medical Center Freiburg, Germany. Results: In many ways, palliative patients contradict the image of a self-determined customer. The palliative patient role is characterized by the concept of relational self-determination rather than an unrestricted selfdetermination. Self-attribution as a customer still occurs when positively associated with a person-centered, individualized treatment. Thus, the customer and patient role overlap within the palliative care setting because of the focus on the individual. Conclusions: The idealized customer role cannot be arbitrarily applied to all medical fields. Palliative patients are dependent on the physician, regardless of whether the customer or patient role is preferred. Hence, selfdetermination must be understood in relational terms, and physicians must recognize their crucial role in promoting patients’ self-determination in the context of shared decision-making.
Yet when considering vulnerable patient groups such as the elderly, mentally, or terminally ill, it becomes questionable whether all patients can fulfill this ideal of rational consumer behavior.1,3 Despite a widespread discussion of consumerism in health care at different levels, in diverse settings, and various countries,1,9–14 these vulnerable contexts remain relatively unexplored. Moreover, published studies that directly focus on the patient’s perspective1,8 are quite rare, even though emerging discourses about patients’ roles and responsibilities do not always correspond directly with patients’ actions, experiences or desires.15 Furthermore, the economization of health care does not spare medical fields with vulnerable patients; palliative care as a politically promoted16 and emerging discipline17 is similarly affected by economic considerations, such as questions of cost effectiveness.18,19 Along with economic considerations at the macrolevel and mesolevel, a holistic research approach should
Introduction
I
n contemporary western societies, the modernization and economization of health care through privatization and deregulation has led to changes in medicine including an intensified discourse on consumerism, the appeal of which derives from the ability to combine social participation with economic benefits.1–3 Whereas consumerism presents opportunities for patient empowerment, freedom of choice, and improved service quality on the one hand, it simultaneously calls for the self-responsibility of individuals in health care and transforms social relations into the logic of customers and markets.1,4–6 Based on the premises of rationality and selfdetermination, patients are viewed as empowered customer– consumers7 who are ‘‘actively calculating and assessing and, if necessary, countering expert knowledge and autonomy with the objective of maximizing the value of services.’’8
Department of Palliative Care, Medical Center – University of Freiburg, Freiburg, Germany. Accepted September 3, 2013.
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include diverse stakeholders’ views,20 particularly the patient’s perspective. Consequently, the qualitative study presented here addresses this research gap by analyzing vulnerable patients’ perspectives on being customers, as exemplified in the field of palliative care. Semistructured interviews were used to gain a deeper understanding of the interviewees’ perceptions based on their described experience, attitude, and behavior.20 More precisely, the following research questions were explored. In what ways do palliative patients refer to themselves as patients, in what ways as customers? In regard to decision making, how is the patient’s concept of self-determination related to his or her attitude towards the customer/patient role? Palliative care provides a special setting for this analysis. These patients are particularly vulnerable due to complex physical and psychological suffering, existential crises, dependencies, and therapy-refractory symptoms, which can cumulate at the end of life and call their sovereign customer status into question. Nevertheless, due to the basic principle of enhancing quality of life, palliative care emphasizes a patient-centered approach that bears resemblance to customer orientation. Study Design and Data Analysis Sample The study participants (n = 25) were recruited between November 2009 and August 2010 as inpatients of the Department of Palliative Care at the University Medical Center Freiburg, Germany. All participants had an incurable, lifethreatening, progressive, and advanced disease with an average life expectancy of 6 months, which has been defined in this study as terminal illness. Further inclusion criteria were the patient’s physical, mental, and psychological ability to participate in an interview lasting 30–50 minutes. Ethical approval was granted by the ethics committee of the University of Freiburg.
After the department’s physicians and social workers had informed the patients about the study and its objectives in oral and written form, the patients had time to reflect on possible study participation. Thirty-one patients initially consented; 6 dropped out and 25 patients ultimately took part. Their informed consent was obtained as part of the interview process. To capture major variations, a stratified purposive sampling strategy21 was chosen, including men and women in equal number (12 males, 13 females), participants with a migration background (5/25), a wide age range (34–86 years; mean age, 65 years), and diverse clinical pictures (e.g., colon cancer, lung cancer, chronic obstructive pulmonary disease, HIV, heart disease, pancreas cancer, breast cancer, prostate cancer). Data collection and analysis For data collection, semistructured interviews on the basis of an interview guide (Table 1) were conducted by two trained interviewers, who were not involved in the patients’ treatments. The collection of data stopped with its saturation. The interviews (mean duration, 31 minutes) were digitally recorded and transcribed verbatim according to transcription standard rules.22 Data analysis proceeded in a multidisciplinary analysis team and was accomplished in three steps: narrative analysis, thematic content analysis, and typology construction. Methodological triangulation was carried out for the validation of analysis. First, the narrative analysis23,24 of each interview was conducted by a reconstructive, hermeneutic approach,25 which provides an in-depth analysis of semantics, syntax, figure of narration, content, and interaction. The results of the narrative analysis were then summarized in case excerpts. Based on the resulting excerpts of each interview, the second step entailed an inductive category development
Interview Guide 1. Could you please describe the course of your illness? 2. Tell me about what kind of experiences you have generally had with physicians in the course of your illness. 3. What do you think: what should physicians pay special attention to when making a decision for your future as patient? How do you interpret the process of making a decision together with the physician? What is especially important to you in this process? What kind of relationship do you have to physicians; how would you describe it? What do you understand by ‘‘partnership’’ between patient and physician? How important is it for you to understand the various options within the treatment process and why? 4. When in your life so far has independence and self-determination been especially important to you? Could you please describe those experiences when you acted self-determined and independently? To be self-determined—what does that mean to you personally? In your opinion, at what point can you no longer determine things for yourself? What do you think: what importance does it have for seriously ill to be self-determined? 5. What do you think: how can one be still self-determined as a patient on the palliative care unit? Can you maybe give me an example? Are there any areas where you would like to be more involved in the decision-making process? 6. When you come to the palliative care unit, what would you like to be: customer or patient? What do you generally associate with being a customer? At the moment there are a lot of discussions at the university medical center to treat patients as customers. What do you think about that idea? There is the saying: The customer is king. How does this apply to your experience on the palliative care unit? And why? Do you approve of treating seriously ill persons as customers? Why/why not? 7. Tell me what it is like being a patient on the palliative care unit.
TERMINALLY ILL PATIENTS AS CUSTOMERS according to the principles of thematic content analysis.23,26,27 The developed category system consisted of three main categories: customer role-patient role, self-determination, and decision making between physician and patient. The interview excerpts were then coded and compared by category. MAXQDA (www.maxqda.de/), a qualitative data analysis software tool, aided the coding procedure. The analysis team reconciled remaining coding differences after a full review of the interview excerpts. The final step consisted of a typology of the gained results. The typology construction21,28 was conducted in four phases: development of the dimensions of analysis, grouping the cases, type construction and characterization of constructed types. The three analyzing dimensions of the present study—self-attribution as patient/customer, self-perceived self-determination, and decision making between physician and patient—were cross-tabulated, and finally five empirical types of patients’ self-conceptions were identified. Results As shown above, the triangulation of the narrative analysis and thematic content analysis led to three main themes. In addition, the typology construction resulted in the identification of five empirical types. These main themes and types are described below. Main themes of the narrative analysis and thematic content analysis Customer role–patient role. Terminally ill patients associate the customer role with the classic role of a purchaser: an active agent with buying intentions, paying for the desired services. Central are volition, determining attitude, and autonomy. Based on the patient’s agency, he or she actively asks for services and has the option of accepting or declining: ‘‘Well, the customer has a will of his own, he wants something and he is willing to pay for that’’ (I 25). In general, customers perceive themselves as the center of attention and as recipients of individualized services. Their will is determining, meaning that the business standard, ‘‘The customer is king,’’ must be respected. Conversely, the patient role is most simply characterized by illness. Disease and physical restrictions lead to dependence on others and medical treatment. Additionally, the patients’ choices are considered to be limited to either accepting the treatment and receiving help or rejecting it and not being helped. Dependence and weakness require that patients receive help from others. Patients become the recipients—mainly of services from health professionals—and feel supported by their care and attention. The patient’s role as a care-receiver is self-attributed and ascribed by others and therefore legitimized. In summary, several inconsistencies between the patient and customer role become evident. Above all, the patient role does not include being a purchaser or chooser. Furthermore, dependence and physical weakness restrict the patient’s ability to act as a self-determined customer. However, some interviewees perceive themselves as customers; namely, if health professionals consult them in decision-making, act according to their individual wishes and regard the patient’s will as influential: ‘‘Well, I’m a customer as long as physicians and nurses are responsive to me as an individual. As long as they consider my own suggestions and
13 as long as I also deliberate the recommendations of the health care professionals.’’ (I 1) This customer characteristic—being treated as the center of attention—is seen as crucial in the case of terminally ill patients: ‘‘The more serious an illness and the less the hope for cure, the more focus on the customer role’’ (I 1). Self-determination of terminally ill patients. The analysis shows that there is a continuum between patients who identify themselves as highly self-determined and those who deny the presence of self-determination during illness. Between these poles are patients who perceive their selfdetermination as restricted. In addition, the patients describe self-determination during illness in two ways: decision-making ability and authority at a conceptual-abstract level and capacity to act according to one’s own will at the level of performance. Decision making between physician and patient. The third main theme of the analysis is decision making between physician and patient. Based on the results, there are three categories of decision making: the physician as decision maker, the patient as decision maker, and collaborative decision making. In the first case, the physician is seen as the professional and therefore considered the decision maker. Due to imbalances in constitution, knowledge, or power, patients delegate or feel forced to leave the decision-making authority to the physician. In the second case, the decision-making authority is attributed to the patient, whether by claiming this authority or truly experiencing it. Still, the patient’s decision-making authority is clearly tied to the physician. Without the physician’s medical knowledge and willingness to let the patient decide, the patient cannot take charge of the decision-making process. Third, decision making is explicitly considered as a collaborative process between the physician and patient. Again, the physician’s medical knowledge plays an important role, but the patient’s preferences are centrally involved in the consultation and treatment process. In the end, it is less important who decides; essential is the mutual deliberation process in advance. Results of typology construction As described above, the third step of data analysis was the typology construction. Based on the three dimensions of analysis—self-attribution as patient/customer, self-perceived self-determination, and decision making between physicianpatient—the grouping process of the interviews led to the following five empirical types (Fig. 1; only 24 cases could be applied to the cross-table). Type 1: Customer—high self-determination. Type 1 claims self-determination to be of high importance. Selfdetermination is most notably linked to decision-making authority. Accordingly, Type 1 regards his volition as influential to the decision-making process and attributes the customer role to himself as a result of experienced, individualized, patient-centered treatment. Nevertheless, self-determination in actual decision making is bound to collaboration with the health professionals and therefore emerges as relational selfdetermination.
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FIG. 1.
Typology results.
Type 2: Customer—restricted self-determination. Type 2 describes his self-determination as being restricted by illness. The restriction is apparent in regard to his decision-making authority and/or the agency to perform the decision. Due to knowledge asymmetry and physical/mental limitations, Type 2 considers himself as dependent on the physician in decision-making. It is the physician’s decision or collaborative decision-making that proves true. At the abstract-conceptual level, Type 2 considers himself a customer, despite lacking capacities to act as a customer in reality. Type 3: Patient—high self-determination. Type 3 conceptualizes self-determination as decision-making ability; therefore, the perception of high self-determination is not modified in illness despite apparent restrictions and perceived asymmetries that influence the decision-making process. Type 3 describes decision-making as a continuum between collaborative decision-making and physician as decision maker but not as patient as decision maker. Thus, he normalizes self-determination at the abstract-conceptual level but cannot perform it in reality. Furthermore, Type 3 perceives the customer and the patient role as incompatible. The customer is viewed as an active agent, demanding and purchasing services, whereas the patient is defined by his disease and need for care. Type 4: Patient—restricted self-determination. Type 4 resembles Type 3. Similarly, he dismisses the customer role and acknowledges the patient’s dependence in decision making due to asymmetries between the physician and the patient. The apparent difference between Type 3 and 4 is found within the conceptualization of self-determination. In
contrast to Type 3, Type 4 explicitly acknowledges that physical and psychosocial limitations restrict self-determination at the performance level. Type 5: Patient—heteronomy. Type 5 denies selfdetermination at both levels: as decision-making authority and as agency to perform decisions. Immobility, pain, dependence, and helplessness lead to the construction of heteronomy by disease. In addition, Type 5 stresses the asymmetry between the layman and professional, resulting in a strong dependence on the physician in decisionmaking. The motif of dependence is also crucial for the perception of the customer role. Customers are associated with autonomy whereas patients cannot perform independent decisions because of their illness and lack of medical knowledge. Self-determination in palliative care? The patients’ conceptualization of self-determination as decision-making authority and agency to perform their own decisions is also discussed in the field of medical ethics.29 Noticeable in the present data is the apparent discontinuity between the two levels (Fig. 2). Even when terminally ill patients state self-determination at the abstract-conceptual level (as in the case of Type 1 and 3), the construct of unrestricted self-determination is not found at the performance level, meaning that self-determination in decision-making is always affected by the physician. In conclusion, all five types reveal dependence on the physician at the performance level and hence exhibit a relational selfdetermination or heteronomy.
TERMINALLY ILL PATIENTS AS CUSTOMERS
FIG. 2.
Discontinuity of self-determination.
Discussion Terminally ill patients as customers? Should patients in palliative care then be interpreted as customers—even if self-determination, one of the most central characteristics of the customer role, is not always applicable within that patient group? This is especially contentious considering the fact that the customer role is not actively claimed but rather depends on the physician’s attitude, concession, and behavior. To summarize, many attributes of the sovereign customer role do not match the self-representation of terminally ill patients. Moreover, new participation opportunities and enhanced patient self-determination—as implied by consumerism—are neither cognitively represented nor acted out by the interviewed population. Rather, previous asymmetries are reproduced, and as shown elsewhere, professional power and dominance in health care do not fundamentally lose their relevance8,30–32— even in a modernized or, in the case of palliative care, patient-centered approach. Because patients cannot completely withdraw themselves from the physicians’ authority in decision making, palliative care and health care in general should be aware of false autonomy expectations in regard to consumerism, especially in vulnerable contexts.
FIG 3.
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Yet, in light of the stated positive connotations of the customer role, terminally ill patients express their wish for a person-centered, individualized treatment and responsive health professionals who consider their requests in counseling and treatment (Type 1–2). Strikingly, the desire for personalized treatment is characteristic of both the customer role and the role of the terminally ill patient (Type 3–5). Considering this overlap between both roles, the importance of an individualized treatment becomes clear (Fig. 3). In summary, this study helps to clarify the limitations of the customer role within the medical context. Although consumerism and economical considerations have influenced modern health care, it is not possible to transfer the idealized customer role to all medical settings, especially those dealing with vulnerable patients. In the palliative care setting, our findings show that terminally ill patients are dependent on the physician’s competence, knowledge and attitude in decision making, regardless of whether the customer or patient role is preferred. Hence, self-determination at the performance level must be understood in relational terms and needs to be promoted by the physician in an interactive decision-making process with the patient. Physicians should be aware of patients’ dependence on their integral role in decision-making.
Overlap between customer and patient role.
16 One could argue that individualized treatment and shared decision-making is nothing new in the field of palliative care. Yet, research shows that there are still shortcomings to be overcome. In a systematic mixed studies review on shared decision-making in palliative care, Be´langer et al.33 point out that most palliative care patients are not involved in the decision-making process to the extent that they would like to be. Furthermore, ‘‘patients, in practice, are seldom encouraged to participate in decision-making’’ and ‘‘options are not often discussed and consent remains implicit.’’33 In conlusion, the authors encourage health professionals to have an open discussion with patients regarding their role in the decisionmaking process.33 By following this recommendation and consciously putting shared decision-making into practice, the positive characteristics of the customer and patient role found in the current study, namely individualized care and patientcenteredness, can be better achieved. Limitations The present study has several limitations that should be considered. Despite using a stratified purposive sampling strategy to ensure quality standards in qualitative research, the results may not cover all possible perceptions of palliative patients. Second, the department’s physicians and social workers asked for the patients’ participation, which may have led to a selection bias. Furthermore, our study focused specifically on the patient-physician dyad although decisionmaking in clinical contexts often involves informal caregivers. Lastly, the study took place in Germany, where the health care system is embedded in the welfare state context. Thus, patients’ perspectives regarding the customer role are influenced by the particular health care system and may vary in other countries.2 Yet, the strengths of this qualitative approach are the exploration of terminally ill patients’ subjective viewpoints and the wealth of in-depth information. This provides useful data for reflection in medical ethics and clinical practice, such as the discontinuity of self-determination. Here, the methodological triangulation as well as the multidisciplinary discussion of the data contributes to the validation of the findings. Conclusion In conclusion, we offer the following suggestion for clinical practice. Our research showed that self-determination in palliative patients is characterized by its relational nature, which is centrally linked to the role of the physician. In order to take on this responsibility, physicians need to develop a reflective attitude and a patient approach which truly enables the terminally ill to participate in shared decision making. Physicians should transfer this reflective attitude into practice by framing information and options in a way that facilitates patients’ participation, specifically through an early introduction of decisions and assessment of patients’ expectations.33 Palliative care education should support physicians in this regard by intensifying its efforts to train this reflective attitude along with shared decision-making competences. Acknowledgments K.S. had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of
SEIBEL ET AL. the data analysis. K.S. contributed to the conception and design, acquisition, analysis and interpretation of data, drafting and critical revision of the manuscript, administrative and technical support and has given final approval of the submitted manuscript. S.C.V. has contributed to the acquisition, analysis and interpretation of data, critical revision of the manuscript and has given final approval of the submitted manuscript. C.X. has contributed to the acquisition of data, critical revision of the manuscript, supervision, and has given final approval of the submitted manuscript. S.A. has contributed to the analysis and interpretation of data, critical revision of the manuscript and has given final approval of the submitted manuscript. T.D. has contributed to analysis and interpretation of data, drafting of the manuscript, critical revision of the manuscript and has given final approval of the submitted manuscript. G.B. has contributed to conception and design, critical revision of the manuscript, obtaining funding and supervision and has given final approval of the submitted manuscript. Furthermore, we want to thank Karin Jors for her linguistic revision of the text and meaningful comments. The qualitative interview study from which this paper originates was supported by The Ministry of Science, Research and the Arts in the federal state of Baden Wuerttemberg, Germany. Author Disclosure Statement No competing financial interests exist. References 1. Kuhlmann E: Modernising Health Care: Reinventing Professions, the State and the Public. Bristol: The Policy Press, 2006. 2. Newman J, Kuhlmann E: Consumers enter the political stage? The modernization of health care in Britain and Germany. J Eur Soc Policy 2007;17:99–111. 3. Henderson S, Petersen A: Introduction: Consumerism in health care. In: Henderson S, Petersen A (eds): Consuming Health: The Commodification of Health Care. London/New York: Routledge, 2002, pp. 1–10. 4. McDonald R, Mead N, Cheraghi-Sohi S, Bower P, Whalley D, Roland M: Governing the ethical consumer: Identity, choice and the primary care medical encounter. Sociol Health Ill 2007;29:430–456. 5. Goode J, Greatbatch D, O’Cathain A, Luff D, Hanlon G, Strangleman T: Risk and the responsible health consumer: The problematics of entitlement among callers to NHS Direct. Crit Soc Policy 2004;24:210–232. 6. Lupton D, Donaldson C, Lloyd P: Caveat emptor or blissful ignorance? Patients and the consumerist ethos. Soc Sci Med1991;33:559–568. 7. Du Gay P, Salaman G: The culture of the customer. J Manage Stud 1992;29:615–633. 8. Lupton D: Consumerism, reflexivity and the medical encounter. Soc Sci Med 1997;45:373–381. 9. Newman J, Vidler E: Discriminating customers, responsible patients, empowered users: Consumerism and the modernisation of health care. J Soc Policy 2006;35:193–209. 10. Ewert B: Economization and marketization in the German healthcare system: How do users respond? German Policy Stud 2009;5:21–44. 11. Hartzband P, Groopman J: The new language of medicine. N Engl J Med 2011;3651372–1373.
TERMINALLY ILL PATIENTS AS CUSTOMERS 12. Andereck W: From patient to consumer in the medical marketplace. Camb Q Healthc Ethic 2007;16:109–113. 13. Henderson S, Petersen A (eds): Consuming Health: The Commodification of Health Care. London/New York: Routledge, 2002. 14. Figert A: The consumer term in medicalization: Future directions with historical foundations. In: Pescolido BA, Martin JK, McLeod JD, et al. (eds): Handbook of the Sociology of Health, Illness, and Healing: A Blueprint for the 21st Century. New York: Springer, 2011, pp. 291–307. 15. Sinding C, Hudak P, Wiernikowski J, Aronson J, Miller P, Gould J, Fitzpatrick-Lewis D: ‘‘I like to be an informed person but .’’ negotiating responsibility for treatment decisions in cancer care. Soc Sci Med 2010;71:1094–1101. 16. Council of Europe: Recommendation Rec (2003) 24 of the Committee of Ministers to member states on the organisation of palliative care. www.coe.int/t/dg3/health/Source/ Rec%282003%2924_en.pdf (Last accessed May 5, 2012). 17. Bruera E, Billings JA, Lupu D, Ritchie CS; Academic Palliative Medicine Task Force of the American Academy of Hospice and Palliative Medicine: AAHPM position paper: Requirements for the successful development of academic palliative care programs. J Pain Symptom Manage 2010;39:743–55. 18. Simoens S, Kutten B, Keirse E, Berghe PV, Beguin C, Desmedt M, Deveugele M, Le´onard C, Paulus D, Menten J: The costs of treating terminal patients. J Pain Symptom Manage 2010;40:436–448. 19. Viola D, Leven DC, Le Pere JC: End-of-life care: An interdisciplinary perspective. Am J Hosp Palliat Med 2009;26: 75–78. 20. Pope C, Mays N: Qualitative research: Reaching the parts other methods cannot reach. An introduction to qualitative methods in health and health services research. BMJ 1995;311:42. 21. Patton MQ: Qualitative Research and Evaluation Methods, 3rd ed. Thousand Oaks, CA: Sage, 2002. 22. Selting M, Auer P, Barth-Weingarten D, et al: Gespraechsanalytisches Transkriptionssystem 2 (GAT 2). Gespraechsforschung—Online-Zeitschrift zur verbalen Interaktion. 2009;10:353–402. www.gespraechsforschung-ozs.de/heft2009/ heft2009.htm (Last accessed November 8, 2011).
17 23. Green J, Thorogood N: Qualitative Methods for Health Research, 2nd ed. Los Angeles: Sage, 2009. 24. Riessmann CK: Narrative Analysis. Newbury Park: Sage, 1993. 25. Kruse J: Einfuehrung in die Qualitative Interviewforschung. Reader, Freiburg, October 2010. 26. Kohlbacher F: The use of qualitative content analysis in case study research. Forum Qual Soc Res 2005;7:Art.21. http:// nbn-resolving.de/urn:nbn:de:0114-fqs0601211 (Last accessed November 8, 2011). 27. Mayring P: Qualitative content analysis. Forum Qual Soc Res 2000;1:Art.20. www.qualitative-research.net/index.php/fqs/ article/view/1089/2385 (Last accessed November 8, 2011). 28. Kluge S: Empirically grounded construction of types and typologies in qualitative social research. Forum Qual Soc Res 2000;1:Art.14. www.qualitative-research.net/index.php/fqs/ article/view/1124/2499 (Last accessed November 8, 2011). 29. Sandman L, Munthe C: Shared decision-making and patient autonomy. Theor Med Bioeth 2009;30:289–310. 30. Kuhlmann E: Traces of doubt and sources of trust: Health professions in an uncertain society. Curr Soc 2006;54: 607–620. 31. Pescosolido BA: Professional dominance and the limits of erosion. Society 2006;43:21–29. 32. Sandman L, Granger BB, Ekman I, Munthe C: Adherence, shared decision-making and patient autonomy. Med Health Care Philos 2012;15:115–127. 33. Be´langer E, Rodrı´guez C, Groleau D: Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis. Palliat Med 2010;25:242–261.
Address correspondence to: Katharina Seibel, MA Department of Palliative Care Medical Center – University of Freiburg Robert-Koch-Strasse 3 79106 Freiburg Germany E-mail: [email protected]
Original Articles
Terminally Ill Patients as Customers: The Patient’s Perspective Katharina Seibel, MA, Sara Celestina Valeo, MD, Carola Xander, MTh, MA, Sandra Adami, Dipl Psych, Thorsten Duerk, MD, and Gerhild Becker, MD, MTh, MSc Palliative Care
Abstract
Background: Consumerism in health care defines patients as self-determined, rational customers. Yet, it is questionable whether vulnerable patients, such as the terminally ill, also fulfill these criteria. Vulnerable contexts and the patient’s perspective on being a customer remain relatively unexplored. The present study addresses this research gap by analyzing terminally ill patients’ views on being customers. Aim: To explore the ways in which patients in palliative care refer to themselves as patients/customers, and how the patients’ concepts of self-determination are related to their attitudes toward the patient/customer role. Design: Qualitative interviews were conducted. Data were analyzed in three steps: narrative analysis, thematic content analysis, and typology construction. Setting/Participants: Researchers recruited 25 patients via the Department of Palliative Care, University Medical Center Freiburg, Germany. Results: In many ways, palliative patients contradict the image of a self-determined customer. The palliative patient role is characterized by the concept of relational self-determination rather than an unrestricted selfdetermination. Self-attribution as a customer still occurs when positively associated with a person-centered, individualized treatment. Thus, the customer and patient role overlap within the palliative care setting because of the focus on the individual. Conclusions: The idealized customer role cannot be arbitrarily applied to all medical fields. Palliative patients are dependent on the physician, regardless of whether the customer or patient role is preferred. Hence, selfdetermination must be understood in relational terms, and physicians must recognize their crucial role in promoting patients’ self-determination in the context of shared decision-making.
Yet when considering vulnerable patient groups such as the elderly, mentally, or terminally ill, it becomes questionable whether all patients can fulfill this ideal of rational consumer behavior.1,3 Despite a widespread discussion of consumerism in health care at different levels, in diverse settings, and various countries,1,9–14 these vulnerable contexts remain relatively unexplored. Moreover, published studies that directly focus on the patient’s perspective1,8 are quite rare, even though emerging discourses about patients’ roles and responsibilities do not always correspond directly with patients’ actions, experiences or desires.15 Furthermore, the economization of health care does not spare medical fields with vulnerable patients; palliative care as a politically promoted16 and emerging discipline17 is similarly affected by economic considerations, such as questions of cost effectiveness.18,19 Along with economic considerations at the macrolevel and mesolevel, a holistic research approach should
Introduction
I
n contemporary western societies, the modernization and economization of health care through privatization and deregulation has led to changes in medicine including an intensified discourse on consumerism, the appeal of which derives from the ability to combine social participation with economic benefits.1–3 Whereas consumerism presents opportunities for patient empowerment, freedom of choice, and improved service quality on the one hand, it simultaneously calls for the self-responsibility of individuals in health care and transforms social relations into the logic of customers and markets.1,4–6 Based on the premises of rationality and selfdetermination, patients are viewed as empowered customer– consumers7 who are ‘‘actively calculating and assessing and, if necessary, countering expert knowledge and autonomy with the objective of maximizing the value of services.’’8
Department of Palliative Care, Medical Center – University of Freiburg, Freiburg, Germany. Accepted September 3, 2013.
11
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include diverse stakeholders’ views,20 particularly the patient’s perspective. Consequently, the qualitative study presented here addresses this research gap by analyzing vulnerable patients’ perspectives on being customers, as exemplified in the field of palliative care. Semistructured interviews were used to gain a deeper understanding of the interviewees’ perceptions based on their described experience, attitude, and behavior.20 More precisely, the following research questions were explored. In what ways do palliative patients refer to themselves as patients, in what ways as customers? In regard to decision making, how is the patient’s concept of self-determination related to his or her attitude towards the customer/patient role? Palliative care provides a special setting for this analysis. These patients are particularly vulnerable due to complex physical and psychological suffering, existential crises, dependencies, and therapy-refractory symptoms, which can cumulate at the end of life and call their sovereign customer status into question. Nevertheless, due to the basic principle of enhancing quality of life, palliative care emphasizes a patient-centered approach that bears resemblance to customer orientation. Study Design and Data Analysis Sample The study participants (n = 25) were recruited between November 2009 and August 2010 as inpatients of the Department of Palliative Care at the University Medical Center Freiburg, Germany. All participants had an incurable, lifethreatening, progressive, and advanced disease with an average life expectancy of 6 months, which has been defined in this study as terminal illness. Further inclusion criteria were the patient’s physical, mental, and psychological ability to participate in an interview lasting 30–50 minutes. Ethical approval was granted by the ethics committee of the University of Freiburg.
After the department’s physicians and social workers had informed the patients about the study and its objectives in oral and written form, the patients had time to reflect on possible study participation. Thirty-one patients initially consented; 6 dropped out and 25 patients ultimately took part. Their informed consent was obtained as part of the interview process. To capture major variations, a stratified purposive sampling strategy21 was chosen, including men and women in equal number (12 males, 13 females), participants with a migration background (5/25), a wide age range (34–86 years; mean age, 65 years), and diverse clinical pictures (e.g., colon cancer, lung cancer, chronic obstructive pulmonary disease, HIV, heart disease, pancreas cancer, breast cancer, prostate cancer). Data collection and analysis For data collection, semistructured interviews on the basis of an interview guide (Table 1) were conducted by two trained interviewers, who were not involved in the patients’ treatments. The collection of data stopped with its saturation. The interviews (mean duration, 31 minutes) were digitally recorded and transcribed verbatim according to transcription standard rules.22 Data analysis proceeded in a multidisciplinary analysis team and was accomplished in three steps: narrative analysis, thematic content analysis, and typology construction. Methodological triangulation was carried out for the validation of analysis. First, the narrative analysis23,24 of each interview was conducted by a reconstructive, hermeneutic approach,25 which provides an in-depth analysis of semantics, syntax, figure of narration, content, and interaction. The results of the narrative analysis were then summarized in case excerpts. Based on the resulting excerpts of each interview, the second step entailed an inductive category development
Interview Guide 1. Could you please describe the course of your illness? 2. Tell me about what kind of experiences you have generally had with physicians in the course of your illness. 3. What do you think: what should physicians pay special attention to when making a decision for your future as patient? How do you interpret the process of making a decision together with the physician? What is especially important to you in this process? What kind of relationship do you have to physicians; how would you describe it? What do you understand by ‘‘partnership’’ between patient and physician? How important is it for you to understand the various options within the treatment process and why? 4. When in your life so far has independence and self-determination been especially important to you? Could you please describe those experiences when you acted self-determined and independently? To be self-determined—what does that mean to you personally? In your opinion, at what point can you no longer determine things for yourself? What do you think: what importance does it have for seriously ill to be self-determined? 5. What do you think: how can one be still self-determined as a patient on the palliative care unit? Can you maybe give me an example? Are there any areas where you would like to be more involved in the decision-making process? 6. When you come to the palliative care unit, what would you like to be: customer or patient? What do you generally associate with being a customer? At the moment there are a lot of discussions at the university medical center to treat patients as customers. What do you think about that idea? There is the saying: The customer is king. How does this apply to your experience on the palliative care unit? And why? Do you approve of treating seriously ill persons as customers? Why/why not? 7. Tell me what it is like being a patient on the palliative care unit.
TERMINALLY ILL PATIENTS AS CUSTOMERS according to the principles of thematic content analysis.23,26,27 The developed category system consisted of three main categories: customer role-patient role, self-determination, and decision making between physician and patient. The interview excerpts were then coded and compared by category. MAXQDA (www.maxqda.de/), a qualitative data analysis software tool, aided the coding procedure. The analysis team reconciled remaining coding differences after a full review of the interview excerpts. The final step consisted of a typology of the gained results. The typology construction21,28 was conducted in four phases: development of the dimensions of analysis, grouping the cases, type construction and characterization of constructed types. The three analyzing dimensions of the present study—self-attribution as patient/customer, self-perceived self-determination, and decision making between physician and patient—were cross-tabulated, and finally five empirical types of patients’ self-conceptions were identified. Results As shown above, the triangulation of the narrative analysis and thematic content analysis led to three main themes. In addition, the typology construction resulted in the identification of five empirical types. These main themes and types are described below. Main themes of the narrative analysis and thematic content analysis Customer role–patient role. Terminally ill patients associate the customer role with the classic role of a purchaser: an active agent with buying intentions, paying for the desired services. Central are volition, determining attitude, and autonomy. Based on the patient’s agency, he or she actively asks for services and has the option of accepting or declining: ‘‘Well, the customer has a will of his own, he wants something and he is willing to pay for that’’ (I 25). In general, customers perceive themselves as the center of attention and as recipients of individualized services. Their will is determining, meaning that the business standard, ‘‘The customer is king,’’ must be respected. Conversely, the patient role is most simply characterized by illness. Disease and physical restrictions lead to dependence on others and medical treatment. Additionally, the patients’ choices are considered to be limited to either accepting the treatment and receiving help or rejecting it and not being helped. Dependence and weakness require that patients receive help from others. Patients become the recipients—mainly of services from health professionals—and feel supported by their care and attention. The patient’s role as a care-receiver is self-attributed and ascribed by others and therefore legitimized. In summary, several inconsistencies between the patient and customer role become evident. Above all, the patient role does not include being a purchaser or chooser. Furthermore, dependence and physical weakness restrict the patient’s ability to act as a self-determined customer. However, some interviewees perceive themselves as customers; namely, if health professionals consult them in decision-making, act according to their individual wishes and regard the patient’s will as influential: ‘‘Well, I’m a customer as long as physicians and nurses are responsive to me as an individual. As long as they consider my own suggestions and
13 as long as I also deliberate the recommendations of the health care professionals.’’ (I 1) This customer characteristic—being treated as the center of attention—is seen as crucial in the case of terminally ill patients: ‘‘The more serious an illness and the less the hope for cure, the more focus on the customer role’’ (I 1). Self-determination of terminally ill patients. The analysis shows that there is a continuum between patients who identify themselves as highly self-determined and those who deny the presence of self-determination during illness. Between these poles are patients who perceive their selfdetermination as restricted. In addition, the patients describe self-determination during illness in two ways: decision-making ability and authority at a conceptual-abstract level and capacity to act according to one’s own will at the level of performance. Decision making between physician and patient. The third main theme of the analysis is decision making between physician and patient. Based on the results, there are three categories of decision making: the physician as decision maker, the patient as decision maker, and collaborative decision making. In the first case, the physician is seen as the professional and therefore considered the decision maker. Due to imbalances in constitution, knowledge, or power, patients delegate or feel forced to leave the decision-making authority to the physician. In the second case, the decision-making authority is attributed to the patient, whether by claiming this authority or truly experiencing it. Still, the patient’s decision-making authority is clearly tied to the physician. Without the physician’s medical knowledge and willingness to let the patient decide, the patient cannot take charge of the decision-making process. Third, decision making is explicitly considered as a collaborative process between the physician and patient. Again, the physician’s medical knowledge plays an important role, but the patient’s preferences are centrally involved in the consultation and treatment process. In the end, it is less important who decides; essential is the mutual deliberation process in advance. Results of typology construction As described above, the third step of data analysis was the typology construction. Based on the three dimensions of analysis—self-attribution as patient/customer, self-perceived self-determination, and decision making between physicianpatient—the grouping process of the interviews led to the following five empirical types (Fig. 1; only 24 cases could be applied to the cross-table). Type 1: Customer—high self-determination. Type 1 claims self-determination to be of high importance. Selfdetermination is most notably linked to decision-making authority. Accordingly, Type 1 regards his volition as influential to the decision-making process and attributes the customer role to himself as a result of experienced, individualized, patient-centered treatment. Nevertheless, self-determination in actual decision making is bound to collaboration with the health professionals and therefore emerges as relational selfdetermination.
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FIG. 1.
Typology results.
Type 2: Customer—restricted self-determination. Type 2 describes his self-determination as being restricted by illness. The restriction is apparent in regard to his decision-making authority and/or the agency to perform the decision. Due to knowledge asymmetry and physical/mental limitations, Type 2 considers himself as dependent on the physician in decision-making. It is the physician’s decision or collaborative decision-making that proves true. At the abstract-conceptual level, Type 2 considers himself a customer, despite lacking capacities to act as a customer in reality. Type 3: Patient—high self-determination. Type 3 conceptualizes self-determination as decision-making ability; therefore, the perception of high self-determination is not modified in illness despite apparent restrictions and perceived asymmetries that influence the decision-making process. Type 3 describes decision-making as a continuum between collaborative decision-making and physician as decision maker but not as patient as decision maker. Thus, he normalizes self-determination at the abstract-conceptual level but cannot perform it in reality. Furthermore, Type 3 perceives the customer and the patient role as incompatible. The customer is viewed as an active agent, demanding and purchasing services, whereas the patient is defined by his disease and need for care. Type 4: Patient—restricted self-determination. Type 4 resembles Type 3. Similarly, he dismisses the customer role and acknowledges the patient’s dependence in decision making due to asymmetries between the physician and the patient. The apparent difference between Type 3 and 4 is found within the conceptualization of self-determination. In
contrast to Type 3, Type 4 explicitly acknowledges that physical and psychosocial limitations restrict self-determination at the performance level. Type 5: Patient—heteronomy. Type 5 denies selfdetermination at both levels: as decision-making authority and as agency to perform decisions. Immobility, pain, dependence, and helplessness lead to the construction of heteronomy by disease. In addition, Type 5 stresses the asymmetry between the layman and professional, resulting in a strong dependence on the physician in decisionmaking. The motif of dependence is also crucial for the perception of the customer role. Customers are associated with autonomy whereas patients cannot perform independent decisions because of their illness and lack of medical knowledge. Self-determination in palliative care? The patients’ conceptualization of self-determination as decision-making authority and agency to perform their own decisions is also discussed in the field of medical ethics.29 Noticeable in the present data is the apparent discontinuity between the two levels (Fig. 2). Even when terminally ill patients state self-determination at the abstract-conceptual level (as in the case of Type 1 and 3), the construct of unrestricted self-determination is not found at the performance level, meaning that self-determination in decision-making is always affected by the physician. In conclusion, all five types reveal dependence on the physician at the performance level and hence exhibit a relational selfdetermination or heteronomy.
TERMINALLY ILL PATIENTS AS CUSTOMERS
FIG. 2.
Discontinuity of self-determination.
Discussion Terminally ill patients as customers? Should patients in palliative care then be interpreted as customers—even if self-determination, one of the most central characteristics of the customer role, is not always applicable within that patient group? This is especially contentious considering the fact that the customer role is not actively claimed but rather depends on the physician’s attitude, concession, and behavior. To summarize, many attributes of the sovereign customer role do not match the self-representation of terminally ill patients. Moreover, new participation opportunities and enhanced patient self-determination—as implied by consumerism—are neither cognitively represented nor acted out by the interviewed population. Rather, previous asymmetries are reproduced, and as shown elsewhere, professional power and dominance in health care do not fundamentally lose their relevance8,30–32— even in a modernized or, in the case of palliative care, patient-centered approach. Because patients cannot completely withdraw themselves from the physicians’ authority in decision making, palliative care and health care in general should be aware of false autonomy expectations in regard to consumerism, especially in vulnerable contexts.
FIG 3.
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Yet, in light of the stated positive connotations of the customer role, terminally ill patients express their wish for a person-centered, individualized treatment and responsive health professionals who consider their requests in counseling and treatment (Type 1–2). Strikingly, the desire for personalized treatment is characteristic of both the customer role and the role of the terminally ill patient (Type 3–5). Considering this overlap between both roles, the importance of an individualized treatment becomes clear (Fig. 3). In summary, this study helps to clarify the limitations of the customer role within the medical context. Although consumerism and economical considerations have influenced modern health care, it is not possible to transfer the idealized customer role to all medical settings, especially those dealing with vulnerable patients. In the palliative care setting, our findings show that terminally ill patients are dependent on the physician’s competence, knowledge and attitude in decision making, regardless of whether the customer or patient role is preferred. Hence, self-determination at the performance level must be understood in relational terms and needs to be promoted by the physician in an interactive decision-making process with the patient. Physicians should be aware of patients’ dependence on their integral role in decision-making.
Overlap between customer and patient role.
16 One could argue that individualized treatment and shared decision-making is nothing new in the field of palliative care. Yet, research shows that there are still shortcomings to be overcome. In a systematic mixed studies review on shared decision-making in palliative care, Be´langer et al.33 point out that most palliative care patients are not involved in the decision-making process to the extent that they would like to be. Furthermore, ‘‘patients, in practice, are seldom encouraged to participate in decision-making’’ and ‘‘options are not often discussed and consent remains implicit.’’33 In conlusion, the authors encourage health professionals to have an open discussion with patients regarding their role in the decisionmaking process.33 By following this recommendation and consciously putting shared decision-making into practice, the positive characteristics of the customer and patient role found in the current study, namely individualized care and patientcenteredness, can be better achieved. Limitations The present study has several limitations that should be considered. Despite using a stratified purposive sampling strategy to ensure quality standards in qualitative research, the results may not cover all possible perceptions of palliative patients. Second, the department’s physicians and social workers asked for the patients’ participation, which may have led to a selection bias. Furthermore, our study focused specifically on the patient-physician dyad although decisionmaking in clinical contexts often involves informal caregivers. Lastly, the study took place in Germany, where the health care system is embedded in the welfare state context. Thus, patients’ perspectives regarding the customer role are influenced by the particular health care system and may vary in other countries.2 Yet, the strengths of this qualitative approach are the exploration of terminally ill patients’ subjective viewpoints and the wealth of in-depth information. This provides useful data for reflection in medical ethics and clinical practice, such as the discontinuity of self-determination. Here, the methodological triangulation as well as the multidisciplinary discussion of the data contributes to the validation of the findings. Conclusion In conclusion, we offer the following suggestion for clinical practice. Our research showed that self-determination in palliative patients is characterized by its relational nature, which is centrally linked to the role of the physician. In order to take on this responsibility, physicians need to develop a reflective attitude and a patient approach which truly enables the terminally ill to participate in shared decision making. Physicians should transfer this reflective attitude into practice by framing information and options in a way that facilitates patients’ participation, specifically through an early introduction of decisions and assessment of patients’ expectations.33 Palliative care education should support physicians in this regard by intensifying its efforts to train this reflective attitude along with shared decision-making competences. Acknowledgments K.S. had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of
SEIBEL ET AL. the data analysis. K.S. contributed to the conception and design, acquisition, analysis and interpretation of data, drafting and critical revision of the manuscript, administrative and technical support and has given final approval of the submitted manuscript. S.C.V. has contributed to the acquisition, analysis and interpretation of data, critical revision of the manuscript and has given final approval of the submitted manuscript. C.X. has contributed to the acquisition of data, critical revision of the manuscript, supervision, and has given final approval of the submitted manuscript. S.A. has contributed to the analysis and interpretation of data, critical revision of the manuscript and has given final approval of the submitted manuscript. T.D. has contributed to analysis and interpretation of data, drafting of the manuscript, critical revision of the manuscript and has given final approval of the submitted manuscript. G.B. has contributed to conception and design, critical revision of the manuscript, obtaining funding and supervision and has given final approval of the submitted manuscript. Furthermore, we want to thank Karin Jors for her linguistic revision of the text and meaningful comments. The qualitative interview study from which this paper originates was supported by The Ministry of Science, Research and the Arts in the federal state of Baden Wuerttemberg, Germany. Author Disclosure Statement No competing financial interests exist. References 1. Kuhlmann E: Modernising Health Care: Reinventing Professions, the State and the Public. Bristol: The Policy Press, 2006. 2. Newman J, Kuhlmann E: Consumers enter the political stage? The modernization of health care in Britain and Germany. J Eur Soc Policy 2007;17:99–111. 3. Henderson S, Petersen A: Introduction: Consumerism in health care. In: Henderson S, Petersen A (eds): Consuming Health: The Commodification of Health Care. London/New York: Routledge, 2002, pp. 1–10. 4. McDonald R, Mead N, Cheraghi-Sohi S, Bower P, Whalley D, Roland M: Governing the ethical consumer: Identity, choice and the primary care medical encounter. Sociol Health Ill 2007;29:430–456. 5. Goode J, Greatbatch D, O’Cathain A, Luff D, Hanlon G, Strangleman T: Risk and the responsible health consumer: The problematics of entitlement among callers to NHS Direct. Crit Soc Policy 2004;24:210–232. 6. Lupton D, Donaldson C, Lloyd P: Caveat emptor or blissful ignorance? Patients and the consumerist ethos. Soc Sci Med1991;33:559–568. 7. Du Gay P, Salaman G: The culture of the customer. J Manage Stud 1992;29:615–633. 8. Lupton D: Consumerism, reflexivity and the medical encounter. Soc Sci Med 1997;45:373–381. 9. Newman J, Vidler E: Discriminating customers, responsible patients, empowered users: Consumerism and the modernisation of health care. J Soc Policy 2006;35:193–209. 10. Ewert B: Economization and marketization in the German healthcare system: How do users respond? German Policy Stud 2009;5:21–44. 11. Hartzband P, Groopman J: The new language of medicine. N Engl J Med 2011;3651372–1373.
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Address correspondence to: Katharina Seibel, MA Department of Palliative Care Medical Center – University of Freiburg Robert-Koch-Strasse 3 79106 Freiburg Germany E-mail: [email protected]
