Promoting Interprofessional Shared Decision Making Communication Skills Training in Palliative Cancer Care Danique Bos-van den Hoek

Promoting Interprofessional Shared Decision Making Communication Skills Training in Palliative Cancer Care Danique Bos-van den Hoek

Promoting Interprofessional Shared Decision Making – Communication Skills Training in Palliative Cancer Care PhD dissertation, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands ISBN 978-94-6419-700-6 Cover Douwe Oppewal Layout Douwe Oppewal Bookmark backside Judith van der Sloot - de Jonge Printing Gildeprint Copyright © 2022 Danique Bos-van den Hoek, Maarssen, The Netherlands. All rights reserved. No part of this dissertation may be reproduced or transmitted in any form by any means, without written permission of the author. The copyrights of articles in this dissertation are retained by the authors or transferred to the journal where applicable. Financial support for the research in this dissertation was provided by a grant from the Netherlands Organisation of Health Research and Development (ZonMw, #844001514). Financial support for printing of this dissertation was kindly provided and supported by Cancer Center Amsterdam.

Promoting Interprofessional Shared Decision Making Communication Skills Training in Palliative Cancer Care ACADEMISCH PROEFSCHRIFT ter verkrijging van de graad van doctor aan de Universiteit van Amsterdam op gezag van de Rector Magnificus prof. dr. ir. P.P.C.C. Verbeek ten overstaan van een door het College voor Promoties ingestelde commissie, in het openbaar te verdedigen in de Agnietenkapel op maandag 13 februari 2023, te 14.00 uur door Daniëlle Wilhelmina van den Hoek geboren te Utrecht

AMC-UvA AMC-UvA prof. dr. E.M.A. Smets prof. dr. H.W.M. van Laarhoven dr. I. Henselmans AMC-UvA prof. dr. B.M. Buurman-van Es dr. M.P. Fransen dr. C.W. Helsper prof. dr. S.C.C.M. Teunissen prof. dr. D.T. Ubbink prof. dr. C. van Zuylen AMC-UvA AMC-UvA UMC Utrecht Universiteit Utrecht AMC-UvA Vrije Universiteit Amsterdam Promotiecommissie Promotores: Copromotores: Overige leden: Faculteit der Geneeskunde

5 CONTENTS Chapter 1 General introduction 7 PART I THE ROLE OF GENERAL PRACTITIONERS AND HOSPITAL NURSES IN SHARED DECISION MAKING 11 Chapter 2 The role of general practitioners in shared decision making with patients about palliative cancer treatment: A qualitative study in the Netherlands 13 Chapter 3 The role of hospital nurses in shared decision making about life-prolonging treatment: A qualitative interview study 45 PART II EFFECTIVE COMMUNICATION SKILLS TRAINING IN SHARED DECISION MAKING 69 Chapter 4 Communication skills training for healthcare professionals in oncology over the past decade: A systematic review of reviews 71 Chapter 5 Online blended communication skills training for oncologists to improve skills in shared decision making about palliative chemotherapy: A pre-posttest evaluation 101 Chapter 6 The effects of a blended communication skills training for general practitioners and hospital nurses on skills to support shared decision making about palliative cancer treatment: A one-group pre-posttest study 123 Chapter 7 Through the eyes of patients: The effect of training general practitioners and nurses on perceived shared decision making support 159 Chapter 8 General discussion 181 Chapter 9 English summary 201 Chapter 10 Nederlandse samenvatting (Dutch summary) 207 ADDENDUM 213 Appendix A – Evaluation Els Borst-conversations 214 Appendix B – Evaluation conversation aids 222 Author contributions 238 Dankwoord (acknowledgements) 243 PhD portfolio 247

7 Chapter 1 General introduction

8 Chapter 1 Good medical communication between clinicians and patients should be at the heart of medicine to facilitate patient-centredness [1, 2]. Patient-centredness is described as a biopsychosocial approach to delivery of care that is respectful, individualised, and empowering and implies participation of the patient based on a relationship of mutual trust and knowledge [3]. Shared decision making (SDM), part of the functions of medical communication [1], is considered the pinnacle of patient-centred care [4, 5] and is endorsed by key national and international bodies [6, 7]. SDM enables the choosing of treatment best fitting a patient’s personal values and preferences, which is essential when no single best treatment strategy exists. This applies eminently to treatment selection for patients with advanced cancer. SDM demands healthcare professionals (HCPs) to possess high order communication skills, which can be taught and improved by communication skills training (CST). This dissertation focuses on the effective promotion of SDM in palliative cancer care through CST for HCPs. Patients with incurable cancer Recently, the Netherlands Comprehensive Cancer Organisation (IKNL) reported that the number of new cancer diagnoses will increase significantly in the coming ten years [8]. Besides, cancer is one of the leading causes of death worldwide [9]. Nearly ten million patients passed away due to cancer in 2020 globally [9, 10]. In The Netherlands, one in five patients has metastatic cancer at diagnosis and in a slightly smaller group metastases occur later in the disease trajectory [11]. It is widely valued that patients who cannot be cured receive appropriate healthcare and have a dignified end of life [12]. However, what is considered appropriate may vary from patient to patient [13]. In the early palliative phase, advanced cancer patients can choose disease-targeted treatment such as systemic therapy. Unfortunately, such treatment may have uncertain, possibly limited benefits and significant symptom burden [14]. Alternatively, patients can choose forgoing diseasetargeted treatment, focussing on best supportive care [15]. Decisions about cancer treatment in the palliative phase are considered highly preference-sensitive – meaning that the best choice of treatment depends on patients’ values and preferences [16, 17]. Shared decision making (SDM) To incorporate patients’ values and preferences in the treatment decision, SDM is widely advocated [16, 18]. The goal of SDM is to reach high-quality treatment decisions, i.e. decisions that are conscious, informed, and person-centred [19, 20]. SDM has been defined and conceptualised in various ways over the years. Although a shared definition to describe SDM lacks [18, 21-23], most descriptions of SDM overlap [21]. Charles, Gafni, and Whelan [18] were the first to describe key characteristics of SDM [18]. Based on Elwyn et

9 General introduction 1 al.’s three-talk model of SDM, i.e. team talk, option talk, and decision talk [24], Stiggelbout et al. [16, p.1173] distinguished the following stages, which will be used throughout this dissertation: “1) the professional informs the patient that a decision is to be made and that the patients’ opinion is important, 2) the professional explains the options and the pros and cons of each relevant option, 3) the professional and patient discuss the patient’s preferences; the professional supports the patient in deliberation, and 4) the professional and patient discuss patient’s decisional role preference, make or defer the decision, and discuss possible follow-up.” SDM has been advocated for several reasons. First, SDM’s value is attributed to ideological and bioethical principles [5], such as beneficence and non-maleficence [25], with patient autonomy being a central ethical imperative [16, 26]. Related, SDM is regarded a key element of patient-centred care [27]. Second, SDM may improve patient outcomes, even on the long term [28], although the evidence is still tentative [29-33]. A comprehensive review showed that SDM improves affective-cognitive outcomes, among which patient satisfaction, understanding, and trust [29]. Besides, multiple studies addressed the effect of SDM-related interventions on patient outcomes. Patient decision aids, i.e. evidencebased tools to help patients make deliberate healthcare choices [34], make patients feel more knowledgeable, better informed, and clearer about values [34]. In a similar fashion, early conversations about the end of life may lead to higher quality of life, less aggressive treatment, better matches of care with patients’ preferences, and lower healthcare costs [15, 35-37]. As a last reason for advocating SDM, patients generally prefer to be involved in decision making about their treatment [38, 39], especially in later phases of the disease trajectory [40]. Although many physicians value SDM, there seems to be a disconnect between what is being advocated and clinical practice [41-43]. Observational studies showed that often neither sufficient awareness was created about the availability of multiple treatment options, including the option to forgo disease-targeted treatment, nor were these options presented equivalently during clinical consultations if discussed [44, 45]. The survival benefit of palliative chemotherapy was not discussed or only vaguely [46] and joint deliberation of treatment options and preference construction often did not take place [44, 47]. Last, physicians seemed to be reluctant to engage in explicit role clarification, i.e. who eventually makes the decision, and match the decision-making process accordingly [48]. Interprofessional SDM and decision support Delivery of care and decision making has become increasingly distributed and interdisciplinary, which has shifted the focus in SDM from the single patient-primary physician encounter to interprofessional SDM happening with multiple collaborating

10 Chapter 1 HCPs both during and outside consultations [49-52]. In this context, decision support, i.e. “structured assistance in deliberating about the decision” has gained a more prominent role [53, p.382]. Decision support interventions include clinical counselling, patient decision aids, and decision coaching [53]. First, clinical counselling is provided by the HCP who has the competence, authority, and accountability to diagnose the health problem, identify options, and facilitate implementation of the final treatment decision, in this dissertation called the ‘primary physician’ [53]. They may counsel during consultations or refer to other decision support interventions. Second, patient decision aids are tools to prepare a patient to participate in SDM with one’s HCP, used alone or together with a decision coach [53]. Third, decision coaching is guidance by trained HCPs to develop patients’ skills for their final deliberation with the primary physician [20, 53]. Decision coaches may have a particularly important role in SDM for patients with advanced cancer. In the Netherlands, patients with incurable cancer make treatment choices with their primary physician, the oncologist. Yet, in this healthcare system, both GPs and hospital oncology nurses, i.e. registered oncology nurses and nurse practitioners, provide care to patients with cancer and may take on the role of decision coach [54-57]. GPs have longstanding, continuous relationships with patients, thereby understanding their medical and psychosocial context, are accessible, and operate in a familiar setting [54, 58, 59]. In addition, GPs are accustomed to a holistic approach to health problems [54]. Similarly, hospital nurses have different relationships with patients than oncologists and unique expertise [60]. Among identified decision-making related tasks for nurses are educating patients about treatment as well as side effects and advocating on patients’ behalf [6163]. In the palliative phase, both types of HCPs have an important role in broaching endof-life matters [60, 64]. A recent survey among cancer patients and survivors showed that the majority appreciates involvement of GPs and/or hospital nurses after a cancer diagnosis [65, 66]. Moreover, albeit evidence is still uncertain, involvement of these HCPs in palliative care decisions may lead to positive patient outcomes, such as improved knowledge, satisfaction with the HCP, and reduced decisional conf lict [67-69]. This all implies that GPs’ and nurses’ involvement in SDM about palliative cancer care could be of significant value. However, it seems that their role in this process is currently undervalued, understudied, and undefined, being a barrier to interprofessional SDM [55]. Communication skills training (CST) programmes Successful and wide implementation of (interprofessional) SDM is complex, requiring multifaceted strategies aimed at awareness, knowledge, and skills of all involved stakeholders [5, 16, 70]. One may differentiate between interventions focused on patients, HCPs, or both [71]. Examples of interventions focused on patients are decision aids, which

11 General introduction 1 were mentioned before as a decision support intervention, and conversation aids [34, 72, 73]. Interventions focusing on HCPs include educational meetings or materials [74]. Lastly, interventions targeting multiple types of stakeholders simultaneously can include a combination of both previously mentioned interventions [71] or conversations between HCPs and patients [75]. As good medical communication is key for SDM, HCPs need to possess high order communication skills [1, 76-79]. Communication skills training (CST) aims to advance communication skills of HCPs. Multiple CST programmes on SDM have been developed [80] and shown to improve SDM [74]. In the palliative cancer care setting, a CST in SDM developed and evaluated in randomised controlled trials by Henselmans et al. [81, 82] was found to be highly effective in the simulated as well as in the clinical context and was the starting point of some research in this dissertation. CST can take on different formats. The CST by Henselmans et al. was intensive (10 hours) and entirely face-to-face. Increasingly, blended learning formats, i.e. online learning with some level of learner control (e.g. over time, place, or pace) combined with more traditional instructor-led synchronous learning [83, 84], are adopted for CST because of their f lexibility, richness, cost-effectiveness [85, 86], and cautiously promising outcomes [87-92]. Nevertheless, little is known about which ingredients of CST, including training formats, are most effective. Evaluation methods In literature, it has been argued that measuring the effectiveness of medical communication in general and SDM specifically is too focused on short-term outcomes and a broader conceptualisation of outcomes, e.g. on the long term and patients, is needed [1, 93]. Similarly, evaluating CST can be done at different levels and from different perspectives. Kirkpatrick’s Model of Training Evaluation discerns four levels of training outcomes [94]: 1) reaction refers to HCPs’ experiences with the CST itself, 2) learning concerns all that HCPs learned from CST, both through self-reported learning and observed learning in simulated settings, 3) behaviour involves behavioural changes of HCPs in clinical settings, ref lecting the transfer of skills, and 4) results encompasses the impact of CST on patient and HCP outcomes. Regarding the perspectives with which outcomes of CST in (simulated) consultations are evaluated, four different quadrants can be distinguished: perspectives of stakeholders being either present in the consultation or not and carrying out either a subjective or an objective evaluation [95]. For example, real patients are present and subjective, while trained observers are not present and considered objective. It has been demonstrated that patients’ and observers’ experiences about SDM do not necessarily correspond [96-99]. This underscores the importance of incorporating not only observers’ perspectives, but also those of patients when evaluating CST in SDM.

12 Chapter 1 Aim and outline of the thesis Given that SDM is essential for appropriate care for incurable cancer patients, but that it is not always optimally applied and that the potentially valuable role of GPs and hospital nurses in this process is still underexposed, the overall aim of the research project was to effectively promote interprofessional SDM in palliative cancer care through CST for HCPs. The main objectives of this dissertation are 1) to gain insight into the role of GPs and hospital nurses in the SDM process and 2) to establish the effects of CST in (supporting) SDM about palliative cancer care. We address the following overarching research questions: 1. How do GPs and hospital nurses perceive their role in SDM about palliative (cancer) care? 2. What are the effects of CST in SDM (support) about palliative cancer care? • What is the current evidence for the effectiveness of CST for HCPs in cancer care? • W hat are the effects of (online) blended CST in (supporting) SDM about palliative cancer care for medical oncologists, GPs, and nurses? This dissertation consists of two parts (Figure 1.1). In part I, we explore how GPs and hospital nurses perceive their role in the SDM process about life-prolonging (cancer) treatment and thus their contribution to interprofessional SDM. Chapter 2 describes GPs’ perceptions of their role in SDM about palliative cancer treatment and chapter 3 describes hospital nurses’ perceptions of their contribution to SDM about life-prolonging treatment. For both HCP groups, the perceived preconditions for such a contribution will be explored and described as well. In part II, we establish the effects of CST in SDM about palliative cancer care. Chapter 4 summarises the evidence for the effectiveness of CST as well as for effective CST features, i.e. intensity, format, and content, and synthesises the current opinion on CST in cancer care. Chapter 5 establishes the effects of an online blended CST for oncologists in SDM about palliative cancer care and compares the effects of this blended format with those of a more extensive, face-to-face format. Chapter 6 demonstrates the effects of a blended CST for GPs and hospital nurses in supporting SDM about palliative cancer care, which was largely based on findings from part I. Chapter 7 examines the effects of this CST for GPs and nurses on cancer patients’ and survivors’ perceived SDM support. Chapter 8 highlights and interprets the main findings of this dissertation, presents implications for practice and research, and gives final conclusions.

13 General introduction 1 Figure 1.1 Structure of this dissertation Abbreviations: Ch = chapter; CST = communication skills training; GP = general practitioner; HCP = healthcare professional; SDM = shared decision making

14 Chapter 1 REFERENCES 1. de Haes H, Bensing J. Endpoints in medical communication research, proposing a framework of functions and outcomes. Patient Educ Couns. 2009;74(3):287-94. 2. de Haes H, Koedoot N. Patient centered decision making in palliative cancer treatment: A world of paradoxes. Patient Educ and Couns. 2003;50(1):43-9. 3. Castro EM, Van Regenmortel T, Vanhaecht K, et al. Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review. Patient Educ Couns. 2016;99(12):1923-39. 4. Barry MJ, Edgman-Levitan S. Shared decision-making: the pinnacle of patient-centered care. N Engl J Med. 2012;366(9):780-1. 5. Stiggelbout AM, Van der Weijden T, De Wit MP, et al. Shared decision making: Really putting patients at the centre of healthcare. Brit Med J. 2012;344:e256. 6. Salzburg Global Seminar. Salzburg statement on shared decision making. Brit Med J. 2011;342(d1745). 7. VVD, D66, CDA, ChristenUnie. [Looking after each other, looking ahead to the future. Coalition agreement 2021-2025]. 2021 [Available from: coa l it ieakkoord-omz ien-naa r-el kaa r-vooruit k ijken-naa r-de-toekoms t /6 .-gezondheid/ gezondheidszorg#]. 8. Praagman J, Slotman E, van Disseldorp L, et al. [Cancer in The Netherlands. Trends & forecasts up to and including 2032]. Utrecht: Netherlands Comprehensive Cancer Organisation (IKNL); 2022. 9. Sung H, Ferlay J, Siegel RL, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin. 2021;71(3):209-49. 10. (IARC) WHOIAfRoC. GLOBOCAN 2020: Fact sheet all cancers 2020 [cited 2022. Available from: 11. Netherlands Comprehensive Cancer Organisation (IKNL). [Metastatic cander in the picture]. IKNL; 2020. 12. Guo Q, Jacelon CS. An integrative review of dignity in end-of-life care. Palliat Med. 2014;28(7):93140. 13. Bolt EE, Pasman HR, Willems D, Onwuteaka-Philipsen BD. Appropriate and inappropriate care in the last phase of life: An explorative study among patients and relatives. BMC Health Serv Res. 2016;16(1):655. 14. Prigerson HG, Bao Y, Shah MA, et al. Chemotherapy use, performance status, and quality of life at the end of life. JAMA Oncol. 2015;1(6):778-84. 15. Howie L, Peppercorn J. Early palliative care in cancer treatment: Rationale, evidence and clinical implications. Ther Adv Med Oncol. 2013;5(6):318-23. 16. Stiggelbout AM, Pieterse AH, de Haes JC. Shared decision making: Concepts, evidence, and practice. Patient Educ Couns. 2015;98(10):1172-9. 17. Wennberg JE, Fisher ES, Skinner JS. Geography and the debate of medicare reform. Health Aff. 2002. 18. Charles C, Gafni A, Whelan T. Shared decision making in the medical encounter: What does it mean? (Or it takes at least two to tango). Soc Sci Med. 1997;44(5):681-92. 19. Epstein RM, Street RLJ. Patient-centered communication in cancer care. Promoting healing and reducing suffering. National Cancer Institute; 2007. Contract No.: NIH Publication No. 07-6225. 20. Stacey D, Murray MA, Legare F, et al. Decision coaching to support shared decision making: A framework, evidence, and implications for nursing practice, education, and policy. Worldviews Evid Based Nurs. 2008;5(1):25-35. 21. Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns. 2006;60(3):301-12.

15 General introduction 1 22. Moumjid N, Gafni A, Bremond A, Carrere MO. Shared decision making in the medical encounter: Are we all talking about the same thing? Med Decis Making. 2007;27(5):539-46. 23. Bomhof-Roordink H, Gartner FR, Stiggelbout AM, Pieterse AH. Key components of shared decision making models: a systematic review. BMJ Open. 2019;9(12):e031763. 24. Elwyn G, Durand MA, Song J, et al. A three-talk model for shared decision making: multistage consultation process. Brit Med J. 2017;359:j4891. 25. Beauchamp TL, Childress JF. Principles of biomedical ethics: Oxford University Press, USA; 2001. 26. Gulbrandsen P, Clayman ML, Beach MC, et al. Shared decision-making as an existential journey: Aiming for restored autonomous capacity. Patient Educ Couns. 2016;99(9):1505-10. 27. de Haes H. Dilemmas in patient centeredness and shared decision making: A case for vulnerability. Patient Educ Couns. 2006;62(3):291-8. 28. Bieber C, Muller KG, Blumenstiel K, et al. Long-term effects of a shared decision-making intervention on physician-patient interaction and outcome in fibromyalgia. A qualitative and quantitative 1 year follow-up of a randomized controlled trial. Patient Educ Couns. 2006;63(3):35766. 29. Shay LA, Lafata JE. Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Making. 2015;35(1):114-31. 30. Hajizadeh N, Uhler L, Herman SW, Lester J. Is shared decision making for end-of-life decisions associated with better outcomes as compared to other forms of decision making? A systematic literature review. MDM Policy Pract. 2016;1(1):2381468316642237. 31. Hauser K, Koerfer A, Kuhr K, et al. Outcome-relevant effects of shared decision making. Dtsch Arztebl Int. 2015;112(40):665-71. 32. Joosten EA, DeFuentes-Merillas L, de Weert GH, et al. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychother Psychosom. 2008;77(4):219-26. 33. Kashaf MS, McGill E. Does Shared decision making in cancer treatment improve quality of life? A systematic literature review. Med Decis Making. 2015;35(8):1037-48. 34. Stacey D, Legare F, Lewis K, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:CD001431. 35. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. J Am Med Assoc. 2008;300(14):1665-73. 36. Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life. Associations with end-of-life conversations. Arch Intern Med. 2009;169(5):480-8. 37. Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28(7):1203-8. 38. Dutch Federation of Cancer Patient Organisations (NFK). [Shared decision making about the cancer treatment: How do patients experience it?]. Utrecht: NFK; 2018. 39. Chewning B, Bylund CL, Shah B, et al. Patient preferences for shared decisions: A systematic review. Patient Educ Couns. 2012;86(1):9-18. 40. Brom L, Pasman HR, Widdershoven GA, et al. Patients’ preferences for participation in treatment decision making at the end of life: Qualitative interviews with advanced cancer patients. PLoS One. 2014;9(6):e100435. 41. Driever EM, Stiggelbout AM, Brand PLP. Shared decision making: Physicians’ preferred role, usual role and their perception of its key components. Patient Educ Couns. 2020;103(1):77-82.

16 Chapter 1 42. Zeuner R, Frosch DL, Kuzemchak MD, Politi MC. Physicians’ perceptions of shared decision making behaviours: A qualitative study demonstrating the continued chasm between aspirations and clinical practice. Health Expect. 2015;18(6):2465-76. 43. Couet N, Desroches S, Robitaille H, et al. Assessments of the extent to which health-care providers involve patients in decision making: A systematic review of studies using the OPTION instrument. Health Expect. 2015;18(4):542-61. 44. Brom L, De Snoo-Trimp JC, Onwuteaka-Philipsen BD, et al. Challenges in shared decision making in advanced cancer care: A qualitative longitudinal observational and interview study. Health Expect. 2017;20(1):69-84. 45. Koedoot CG, Oort FJ, de Haan RJ, et al. The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are: Palliative chemotherapy and watchful-waiting. Eur J Cancer. 2004;40(2):225-35. 46. Audrey S, Abel J, Blazeby JM, et al. What oncologists tell patients about survival benefits of palliative chemotherapy and implications for informed consent: Qualitative study. Brit Med J. 2008;337:a752. 47. Henselmans I, Van Laarhoven HW, Van der Vloodt J, et al. Shared decision making about palliative chemotherapy: A qualitative observation of talk about patients’ preferences. Palliat Med. 2017;31(7):625-33. 48. Bieber C, Nicolai J, Gschwendtner K, et al. How does a shared decision making (SDM) intervention for oncologists affect participation style and preference matching in patients with breast and colon cancer? J Cancer Educ. 2018;33(3):708-15. 49. Bomhof-Roordink H, Fischer MJ, van Duijn-Bakker N, et al. Shared decision making in oncology: A model based on patients’, health care professionals’, and researchers’ views. Psychooncology. 2019;28(1):139-46. 50. Rapley T. Distributed decision making: The anatomy of decisions-in-action. Sociol Health Illn. 2008;30(3):429-44. 51. Legare F, Stacey D, Pouliot S, et al. Interprofessionalism and shared decision making in primary care: A stepwise approach towards a new model. J Interprof Care. 2011;25(1):18-25. 52. Clayman ML, Gulbrandsen P, Morris MA. A patient in the clinic; a person in the world. Why shared decision making needs to center on the person rather than the medical encounter. Patient Educ Couns. 2017;100(3):600-4. 53. Stacey D, Legare F, Boland L, et al. 20th anniversary Ottawa Decision Support Framework: Part 3 overview of systematic reviews and updated framework. Med Decis Making. 2020;40(3):379-98. 54. de Wit NJ. A “time out consultation” in primary care for elderly patients with cancer: Better treatment decisions by structural involvement of the general practitioner. Eur J Cancer Care (Engl). 2017;26:e12711. 55. McCarter SP, Tariman JD, Spawn N, et al. Barriers and promoters to participation in the era of shared treatment decision making. West J Nurs Res. 2016;38(10):1282-97. 56. Dutch College of General Practitioners (NHG). [NHG position on oncological care in general practice]. Utrecht: NHG; 2014. 57. Dutch Nursing Society (V&VN). [Area of expertise oncology nurse]. Hilversum: V&VN; 2015. 58. Dahlhaus A, Vanneman N, Guethlin C, et al. German general practitioners’ views on their involvement and role in cancer care: A qualitative study. Fam Pract. 2014;31(2):209-14. 59. Haggerty JL, Reid RJ, Freeman GK, et al. Continuity of care: A multidisciplinary review. Brit Med J. 2003(327):1219-21. 60. Buiting HM, Rurup ML, Wijsbek H, et al. Understanding provision of chemotherapy to patients with end stage cancer: Qualitative interview study. BMJ Support Palliat Care. 2011;1(1):33-41. 61. McCullough L, McKinlay E, Barthow C, et al. A model of treatment decision making when patients have advanced cancer: How do cancer treatment doctors and nurses contribute to the process? Eur J Cancer Care (Engl). 2010;19(4):482-91.

17 General introduction 1 62. Tariman JD, Szubski KL. The evolving role of the nurse during the cancer treatment decision making process: A literature review. Clin J Oncol Nurs. 2015;19(5):548-56. 63. Tariman JD, Mehmeti E, Spawn N, et al. Oncology nursing and shared decision making for cancer treatment. Clin J Oncol Nurs. 2016;20(5):560-3. 64. Lang V, Walter S, Fessler J, et al. The role of the general practitioner in cancer care: A survey of the patients’ perspective. J Cancer Res Clin Oncol. 2017;143(5):895-904. 65. Dutch Federation of Cancer Patient Organisations (NFK). [You have (had) cancer: How do you experience the support of your general practitioner and nurse?]. Utrecht: NFK; 2019. 66. Noteboom EA, Perfors IA, May AM, et al. GP involvement after a cancer diagnosis; Patients’ call to improve decision support. BJGP Open. 2021;5(1). 67. O’Toole E, Step MM, Engelhardt K, et al. The role of primary care physicians in advanced cancer care: Perspectives of older patients and their oncologists. J Am Geriatr Soc. 2009;57(52):S265-8. 68. Wieldraaijer T, de Meij M, Zwaard S, et al. Introducing a time out consultation with the general practitioner between diagnosis and start of colorectal cancer treatment: Patient-reported outcomes. Eur J Cancer Care (Engl). 2019;28(6):e13141. 69. Baik D, Cho H, Masterson Creber RM. Examining interventions designed to support shared decision making and subsequent patient outcomes in palliative Care: A systematic review of the literature. Am J Hosp Palliat Care. 2019;36(1):76-88. 70. Joseph-Williams N, Lloyd A, Edwards A, et al. Implementing shared decision making in the NHS: Lessons from the MAGIC programme. Brit Med J. 2017;357:j1744. 71. Legare F, Adekpedjou R, Stacey D, et al. Interventions for increasing the use of shared decision making by healthcare professionals. Cochrane Database Syst Rev. 2018;7:CD006732. 72. ShepherdHL, Barratt A, Jones A, et al. Can consumers learn to ask three questions to improve shared decisionmaking? A feasibility study of the ASK (AskShareKnow) Patient-Clinician Communication Model® intervention in a primary health-care setting. Health Expect. 2016;19(5):1160-8. 73. Henselmans I, Brugel SD, de Haes H, et al. Promoting shared decision making in advanced cancer: Development and piloting of a patient communication aid. Patient Educ Couns. 2019;102(5):91623. 74. Coates D, Clerke T. Training interventions to equip health care professionals with shared decision making skills: A systematic scoping review. J Contin Educ Health Prof. 2020;40(2):100-19. 75. Plum NM, Hoogstraten CE, Borst-Eilers E, Kruize AA. Sighing no longer an option: Healthcare professionals and patients help each other in a unique learning environment. Patient Educ Couns. 2013;90(3):338-40. 76. Elwyn G, Frosch D, Thomson R, et al. Shared decision making: A model for clinical practice. J Gen Intern Med. 2012;27(10):1361-7. 77. Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: The competences of involving patients in healthcare choices. Br J Gen Pract. 2000;50:892-7. 78. Samant R, Aivas I, Bourque JM, Tucker T. Oncology residents’ perspectives on communication skills and shared decision making. J Cancer Educ. 2010;25(4):474-7. 79. Stalnikowicz R, Brezis M. Meaningful shared decision making: Complex process demanding cognitive and emotional skills. J Eval Clin Pract. 2020;26(2):431-8. 80. Diouf NT, Menear M, Robitaille H, et al. Training health professionals in shared decision making: Update of an international environmental scan. Patient Educ Couns. 2016;99(11):1753-8. 81. Henselmans I, van Laarhoven HWM, de Haes H, et al. Training for medical oncologists on shared decision making about palliative chemotherapy: A randomized controlled trial. Oncologist. 2019;24(2):259-65. 82. Henselmans I, van Laarhoven HWM, van Maarschalkerweerd P, et al. Effect of a skills training for oncologists and a patient communication aid on shared decision making about palliative systemic treatment: A randomized clinical trial. Oncologist. 2020;25(3):e578-e88.

18 Chapter 1 83. Hrastinski S. What do we mean by blended learning? TechTrends. 2019;63(5):564-9. 84. Watson J. Blended learning: The convergence of online and face to face education. North American Council for Online Learning; 2008. 85. Maloney S, Nicklen P, Rivers G, et al. A cost-effectiveness analysis of blended versus face-to-face delivery of evidence-based medicine to medical students. J Med Internet Res. 2015;17(7). 86. Goh PS. eLearning or technology enhanced learning in medical education-Hope, not hype. Med Teach. 2016;38(9):957-8. 87. BergMN, Ngune I, Schofield P, et al. Effectiveness of online communication skills training for cancer and palliative care health professionals: A systematic review. Psychooncology. 2021;30(9):1405-19. 88. Pelayo-Alvarez M, Perez-Hoyos S, Agra-Varela Y. Clinical effectiveness of online training in palliative care of primary care physicians. J Palliat Med. 2013;16(10):1188-96. 89. Cook DA, Levinson AJ, Garside S, et al. Internet-based learning in the health professions a metaanalysis. J Am Med Assoc. 2008;300(10):1181-96. 90. Voutilainen A, Saaranen T, Sormunen M. Conventional vs. e-learning in nursing education: A systematic review and meta-analysis. Nurse Educ Today. 2017;50:97-103. 91. Thepwongsa I, Kirby C, Schattner P, Piterman L. Online continuing medical education (CME) for GPs: does it work? A systematic review. Aust Fam Physician. 2014;43(10):717-21. 92. Vallee A, Blacher J, Cariou A, Sorbets E. Blended learning compared to traditional learning in medical education: Systematic review and meta-analysis. J Med Internet Res. 2020;22(8):e16504. 93. Elwyn G, Frosch DL, Kobrin S. Implementing shared decision making: Consider all the consequences. Implement Sci. 2016;11:114. 94. Kirkpatrick D, Kirkpatrick J. Evaluating training programs: The four levels: Berrett-Koehler Publishers; 2006. 95. Blanch-Hartigan D, Hall JA, Krupat E, Irish JT. Can naive patients put themselves in patients’s shoes? Reliability and validity of the analogue patient methodology. Med Care. 2013;51(3):e16-e21. 96. Diendere G, Farhat I, Witteman H, Ndjaboue R. Observer ratings of shared decision making do not match patient reports: An observational study in 5 family medicine practices. Med Decis Making. 2021;41(1):51-9. 97. Kasper J, Heesen C, Kopke S, et al. Patients’ and observers’ perceptions of involvement differ. Validation study on inter-relating measures for shared decision making. PLoS One. 2011;6(10):e26255. 98. Wunderlich T, Cooper G, Divine G, et al. Inconsistencies in patient perceptions and observer ratings of shared decision making: The case of colorectal cancer screening. Patient Educ Couns. 2010;80(3):358-63. 99. Geessink NH, Ofstad EH, Olde Rikkert MGM, et al. Shared decision making in older patients with colorectal or pancreatic cancer: Determinants of patients’ and observers’ perceptions. Patient Educ Couns. 2018;101(10):1767-74.

19 General introduction 1


23 Chapter 2 The role of general practitioners in shared decision making with patients about palliative cancer treatment: A qualitative study in the Netherlands This chapter is published as: Bos-van den Hoek DW, van der Velden NCA, Huisman R, van Laarhoven HWM, Tange D, Wind J, Smets EMA, Henselmans I. Role of GPs in shared decision making with patients about palliative cancer treatment: A qualitative study in the Netherlands. British Journal of General Practice. 2022;72(717):e276-84.

24 Chapter 2 ABSTRACT Background: General practitioners (GPs) are well placed to enhance shared decision making (SDM) about treatment for patients with advanced cancer. However, to date, little is known about GPs’ views about their contribution to SDM. Aim: To explore GPs’ perspectives on their role in SDM about palliative cancer treatment and the requirements they report to fulfil this role. Design and setting: Qualitative interview study among Dutch GPs. Method: GPs were sampled purposefully and conveniently. In-depth, semi-structured interviews were conducted, recorded, and transcribed verbatim. Transcripts were analysed by thematic analysis. Results: Fifteen GPs took part in this study. Most of them reported practices that potentially support SDM: checking the quality of a decision, complementing SDM, and enabling SDM. Even though most of the GPs believed that decision making about systemic cancer treatment is primarily the oncologist’s responsibility, they did recognise their added value in the SDM process because of their gatekeeper position, the additional opportunity they offer patients to discuss treatment decisions, and their knowledge and experience as primary healthcare providers at the end of life. Requirements for supporting the SDM process were described as: good collaboration with oncologists, sufficient information about the disease and its treatment, time to engage in conversations about treatment, a trusting relationship with patients, and patient-centred communication. Conclusion: GPs may support SDM by checking the quality of a decision and by complementing and enabling the SDM process to reach high-quality decisions. This conceptualisation of the GP’s supporting role in SDM may help understand how SDM is carried out through interprofessional collaboration and provide tools for how to adopt a role in the interprofessional SDM process.

25 Role GPs in SDM 2 INTRODUCTION Patients with advanced cancer often deal with complex treatment decisions that depend on their values and preferences and, hence, require shared decision making (SDM) [1-3]. SDM is the process of decision making in which the healthcare professional and patient jointly discuss pros and cons of different treatment options, as well as the patient’s values and preferences to come to an agreed treatment decision [3-5]. The relevance of SDM is underscored by ethical considerations of patient-centred care and patient autonomy [6], as well as by its positive impact on patient outcomes [7-13]. In the context of palliative cancer care, most patients wish to be involved in making decisions about treatment [1416]. However, SDM is not always visible in observational studies. These studies suggest insufficient discussion of patients’ values and the option to refrain from disease-targeted treatment [17-20]. It is increasingly recognised that SDM often takes place across multiple encounters with and between different clinicians [21, 22]. Although oncologists have expert knowledge about cancer treatment and often make the final choices about treatment with patients, GPs are well placed to enhance SDM and contribute to high-quality decisions [23]. GPs have continuous relationships with patients, which can help them understand the medical and psychosocial context [24-26]. They are accustomed to using a holistic approach to health problems and, generally, receive training in effective communication [24]. A recent survey among patients with cancer found that the majority appreciate the GP’s involvement in cancer care after diagnosis [27]. GPs’ involvement might also increase patient satisfaction with the decision [28] and patient satisfaction with GPs’ involvement [29], and may reduce decisional conf lict for patients with advanced cancer [30]. While GPs are involved in cancer screening, diagnosis, follow-up, and terminal palliative care, they seem to hardly be involved in decision making about cancer treatment [25, 29, 31-34]. Despite suggestions that GPs should collaborate with oncologists to discuss treatment decisions with patients throughout the palliative phase [35-37], little is known about how GPs could contribute to SDM about advanced cancer treatment. By examining GPs’ existing practices in SDM about advanced cancer treatment from their own perspective and conceptualising them, the study wished to identify ways of strengthening GPs’ contribution and ultimately guarantee patient-centred care for people with advanced cancer. Thus, the aim was to explore GPs’ perspectives on their role in SDM about palliative cancer treatment and the requirements to fulfil this role.

26 Chapter 2 METHODS Design Semi-structured, in-depth interviews were conducted with GPs. Data were analysed thematically. This report meets the standards for reporting qualitative research items [38]. Recruitment GPs were eligible to participate in the study if they reported experience with patients with advanced cancer. GPs were recruited using purposeful and convenience sampling. The authors aimed to recruit a diverse sample of GPs with respect to sex, work experience, patient population, location (urban/suburban/rural), and type of practice (solo/duo/group practice). Interested GPs were sent information and an informed consent form. Data collection Interviews were conducted face-to-face by two researches in GPs’ consultation rooms. The researchers’ different backgrounds combined a conceptual approach to healthcare with practical experience in medicine, which helped them refine the interview guide and understand the experiences of GPs. An interview guide was created and piloted with two GPs, resulting in small modifications (Table 2.1). The interview started with the participant reading the example case in Table 2.1 to set the scene to discuss the interview topics. The example case described a patient diagnosed with advanced stomach cancer who was considering palliative chemotherapy with a median survival gain of five months. While discussing the GPs’ role in the example case, the interviewer probed for general ref lections and opinions on the following topics: the current and desired role of GPs in (conversations about) treatment decision making, as well as the requirements to be able to fulfil this role. The interviews lasted 30-45 minutes each and were conducted between October 2018 and January 2019. All participants signed informed consent forms and reimbursement was offered to all GPs for their time.

27 Role GPs in SDM 2 Table 2.1. Topic guide A. Short introduction to the interview Introducing interviewer and research Explaining confidentiality and anonymity Signing informed consent Asking permission for audio recording B. Substantive part of the interview Presentation of a case of a patient with incurable cancer who had to decide on treatment with a lifeprolonging intent: “Pieter de Vries, aged 74, is single, has two daughters and one grandson. He lives on a remote farm. His wife died a few years ago. He has been dizzy for some time and has little appetite. He also lost a lot of weight. After two visits to the GP, he was referred to the hospital and received bad news last week. He has stomach cancer, with metastases to the bones. The same week he had a conversation with the medical oncologist about treatment. He is eligible for palliative chemotherapy (CapOx). The median survival without chemotherapy is 6 months; with chemotherapy 11 months. Chemotherapy has side effects, including nausea or vomiting, fatigue, diarrhoea, tingling or numbness of the fingers and feet, hand-foot syndrome (redness, chapping).” Current role and ideal role for involvement in treatment decision making Current and desired role Position with respect to other health professionals Goals in conversations with patients Steps or actions to reach these goals Involvement in four stages of shared decision making: 1) informing about decision, 2) explaining options with pros and cons, 3) discussing preferences and supporting deliberation, and 4) making decision [5]). Added value of conversation with general practitioner Moments for conversation Stimulating and restraining factors for fulfilling the role Needs required in order to fulfil the role C. Conclusion of the interview Issues that were not addressed Data analysis Interviews were audio recorded, transcribed verbatim, anonymised, and analysed by thematic analysis [39]. Coding was performed using MAXQDA software (versions 2018 and 2020). The approach was largely inductive; no coding sheet was prepared beforehand. The final categorisation of some themes and subthemes was informed, and likely inf luenced, by the simultaneous analysis of interviews with hospital nurses about their role in SDM about palliative treatment [40]. Three researchers were involved in the coding process. Four interviews were double-coded independently by two researchers and discussed until they reached consensus. Another combination of two researchers repeated this for another four interviews. As coding agreement was high, one of these two researchers coded the consecutive seven transcripts, and they both discussed uncertainties until they reached consensus.

28 Chapter 2 During analysis, sections that referred to decision making in settings other than cancer care in the early palliative phase were not coded. Data saturation was monitored and considered achieved when no new substantial codes appeared in the final four interviews. A structure of categories and subcategories was developed throughout the analysis (Table 2.2). Two researchers refined potential overarching themes and the content of these themes was analysed to generate clear definitions and names for each theme. Participants received a short summary of the analysis to which they could respond. This is known as member checking, a technique for responder validation. Twelve GPs responded, and their comments led to small refinements. Table 2.2. Themes and subthemes resulting from the thematic analysis Involvement of GPs in the SDM process Moments to engage in conversations about treatment Initiative for the GP-patient conversation Supporting role of GPs in the SDM process Checking the quality of a decision (high-quality decision: conscious, informed and appropriate) Checking choice awareness Checking if decision is informed Checking if decision is aligned with patient’s values Complementing SDM (adding to the decision-making process to reach a high-quality decision) Increasing choice awareness Clarifying and adding information Exploring values and supporting preference construction Enabling SDM (organising activities to ensure reaching a high-quality decision) Acting as a patient advocate Preparing upcoming conversations with the oncologist Interprofessional SDM: GPs’ added value The unique position of GP in healthcare system Additional and different conversations about treatment Primary healthcare provider in the terminal stage Requirements for fulfilling a role in the SDM process Collaboration with the oncologist Information about cancer and treatment options Time to engage in conversations about treatment Trusting relationship with patient Patient-centred communication Abbreviations: GP = general practitioner; SDM = shared decision making

29 Role GPs in SDM 2 Ethics Ethical clearance was obtained from the Human Ethics Committee at the Amsterdam UMC, location AMC (reference number W18_268 # 18.312). RESULTS Fifteen Dutch GPs participated; they were based at fourteen different practices representing eleven different health centres located in two provinces around Amsterdam. Eleven participants were recruited through the researchers’ network, one through snowballing, and three GPs responded to an invitation sent by the academic network of GPs of the authors’ institute. Table 2.3 gives the participants’ characteristics. The themes and subthemes resulting from the thematic analysis are outlined in Table 2.2. Involvement of GPs in the SDM process Moments to engage in conversations about treatment Most GPs mentioned having conversations with patients about their physical and psychological wellbeing on several occasions throughout the cancer trajectory: before referral and after patients received their diagnosis or other bad news, such as disease progression. These latter conversations were mentioned as possible starting points for GPs’ involvement in the SDM process: Often, when someone has received bad news, I’m definitely involved. So I get in touch with them and tell them I’d love to drop by and talk to you about this. (…) To hear what you’ve learned. And whether you’ve decided for yourself yet? (GP10) Initiative for the GP-patient conversation GPs differed in their opinions about whether patients, oncologists, or GPs should initiate such conversations. A major consideration was the importance of tailoring contact to patients’ needs, with some GPs waiting for patients to take the initiative while others contacted patients more proactively. Some GPs mentioned that, during cancer treatment, patients generally did not express needing GP involvement. Occasionally, oncologists actively referred patients to GPs to discuss treatment options: Only in rare cases, the oncologist goes: talk to your GP about this. Then it’s usually in the letter, uhm, and that’s of course fine by me. And that’s generally to do with me knowing the circumstances just that bit better. (GP01)

30 Chapter 2 Table 2.3. Participants characteristics (N=15) Characteristics Years of experience, mean (range) 17.43 (4-30) <10 years, n (%) 4 (26.7) 10-20 years, n (%) 4 (26.7) >20 years, n (%) 7 (46.7) Sex, n (%) Male 6 (40.0) Female 9 (60.0) Patient population Origin, n (%) Mixed 11 (73.3) Mostly native-born 2 (13.3) Mostly foreign-born 2 (13.3) Age group, n (%) Younger than average 5 (33.3) Average 5 (33.3) Older than average 5 (33.3) Type of practicea Type, n (%) Solo 3 (20.0) Duo 8 (53.3) Group 4 (26.7) Location, n (%) Rural 2 (13.3) Suburban 8 (53.3) Urban 5 (33.3) Affinity with palliative careb, n (%) High 8 (53.3) Average 6 (40.0) Low 1 (6.7) a General practitioners (GPs) worked in fourteen dif ferent practices; two GPs worked at the same practice b Combined score of received training on palliative care (yes/no) and indicated af fection with palliative care (yes/no); indicating having both was scored as high af finity, having either one was scored as average af finity, and having none was scored as low af finity with palliative care Supporting role All GPs reported practices that potentially support SDM. These were categorised into three categories: checking the quality of the decision, complementing SDM, and enabling SDM. GPs appear to deploy these strategies to ensure that decision making about treatments is conscious, where the patient is aware of the choice; well informed so the patient knows about the various possibilities and their pros and cons; and appropriate, in that the decision aligns with patients’ values and preferences [41, 42]. Figure 2.1 represents these strategies that GPs may use to reach high-quality decisions.