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Applying patient perspectives on caring to curriculum development
Patient Education and Counseling 72 (2008) 367–373 www.elsevier.com/locate/pateducou
Applying patient perspectives on caring to curriculum development David Hatem a,*, Kathy Mazor a,c, Melissa Fischer a,c, Mary Philbin a, Mark Quirk b a
Department of Internal Medicine, University of Massachusetts Medical School, 55 Lake Avenue North,Worcester, MA 01655, USA b Department of Family Medicine and Community Health, University of Massachusetts Medical School, Worcester, USA c Meyers Primary Care Institute, University of Massachusetts Medical School, Worcester, USA Received 16 February 2008; received in revised form 18 May 2008; accepted 28 May 2008
Abstract Objective: To report how patient viewpoints on caring inform curriculum development for teaching sessions on delivering bad news, making the transition to palliative care, and communicating about a medical error. Methods: We conducted focus groups that used patients recruited from the surrounding community to view videotapes of physicians delivering bad news, talking with a patient about palliative care, and communicating about a medical error. We used focus group results, combined with evidence from the medical literature to inform curriculum content for workshops conducted with Internal Medicine and Family Medicine residents at the University of Massachusetts Medical School. Results: Patient perspectives on caring gathered through focus groups differed in significant ways from the existing medical literature on caring when providers are communicating in the challenging situations that were depicted. Our data pointed out that individual reactions were unique and sometimes contradictory in that one person saw behavior as caring that others thought was uncaring. Participants often used qualifiers in their comments like ‘‘appropriate’’ amounts of information, ‘‘measured’’ empathy, chooses words carefully to reflect the relative nature of caring. ‘‘Arranges to meet healthcare needs,’’ an issue that extends beyond the encounter, was seen as a new component of caring not previously described. Applying these concepts to curriculum required that we not only focus on the behavioral skills involved in these tasks, but also the processes of assessing patient’s informational and emotional needs, and then taking steps to meet them, while adjusting behavior in real time to meet patients needs for caring. Workshops delivered were highly evaluated by residents. Conclusion: Patient perspectives on caring when providers deliver bad news, discuss transitions to palliative care, and communicate about a medical error reinforce that patient expectations for caring are highly contextualized and physician behavior needs to be individualized. We taught residents not only behavioral skills, but also the process skills of anticipating patient reactions, recognizing patient clues, planning and choosing effective strategies on the fly, and assessing one’s own performance characteristic of communication expertise. Practice implications: Teaching caring attitudes with challenging communication tasks requires that learners appreciate and value not only caring behaviors but also learn the process by which they must adjust and titrate their actions to meet patient needs. # 2008 Elsevier Ireland Ltd. All rights reserved. Keywords: Caring attitudes; Patient perspectives; Medical education; Delivering bad news; Medical error; Palliative care
1. Introduction
The secret of the care of the patient is in caring for the patient—Francis Peabody The physician’s caring attitude is essential to the patient’s perception of the quality of healthcare. Accrediting bodies call for care that is ‘‘compassionate, appropriate, and effective’’ [1],
* Corresponding author. Tel.: +1 508 856 5972; fax: +1 508 856 8085. E-mail address: [email protected] (D. Hatem). 0738-3991/$ – see front matter # 2008 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2008.05.020
a sentiment echoed by medical educators [2] and public reporting agencies [3]. There has been a recent focus on developing curricula and training faculty in this area [4–6]. Yet, current research demonstrates that physicians often miss the opportunity to express caring in their interactions with patients. Levinson, for example, found that both primary care physicians and surgeons failed to positively address emotional clues in their interactions with patients in nearly two thirds of the cases reviewed [7]. Evidence in trainees also suggests that patientcentered attitudes, felt by many to be a proxy for caring, decline as students progress through medical school [8]. Several things may contribute to this. Caring is an elusive concept and lacks clear definition. Recent literature that defines caring behaviors
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in clinical care [9] and teaching [4] generated perspectives on caring through expert opinion. Patient perspectives on these topics are less common. While patient perspectives on palliative care [10–12], communicating about medical error [13] and delivering bad news [14] do exist, teaching and learning about these specific situations that represent challenges to caring also rely chiefly on expert opinion [15,16]. The literature that details patient perspectives in these areas demonstrates a significant discrepancy between what patients want to talk about and what physicians are ready to discuss. [14,17,18]. When a medical error is committed literature suggests that patients desire full disclosure of details, assumption of responsibility, an apology, and detailing next steps to take care of the patient [14], while physicians report that 42% would explicitly state that an error occurred, only 19% would volunteer any information about the error’s cause, and 63–92% would not provide specific information about preventing future errors [17,18]. In a study with standardized patients, surgeons who committed an error apologized in only 47% of encounters [18]. This paper presents the second part of a two-part study that first sought to define caring from the patient’s perspective, in situations in which caring is likely to be challenged. The first study demonstrated that (1) patient viewpoints in focus groups differed from trained raters’ views of videotaped encounters in which physicians interviewed standardized patients to help them make transitions to palliative care, hear bad news, and hear about a medical error in their care and (2) individual patient viewpoints were varied and sometimes even contradictory when focus group members viewed videotapes of physicians rated by checklists as particularly caring or uncaring. Opinions of one individual who was thought of as particularly caring were often contradicted by those of others. Contextual features of encounters were found to be critical as demonstrated when participants in the focus groups discussed a relational aspect to caring that they captured in several ways. Participants used qualifiers in some of their comments about providers (gives information in ‘‘appropriate’’ doses; offers measured empathy; carefully crafts empathic statements), describing communication in a way that focused on the process of the interview more than the content, suggesting a give and take or a focus on the relationship between individuals (chooses words carefully and checks for meaning; exhibits a soft but confident tone, slow pace, and comfortable appearance; acts quickly and decisively while preserving patient autonomy), and commented on behavior that extended beyond the encounter (helps the patient move forward with next steps). Thus, rather than being able to define a set of caring behaviors, what emerged is that a key element of caring seemed to be the ability of the provider to anticipate the potential needs of patients, assess and address the individual patient’s perspective, reflect on the patient’s responses and adjust behaviors based on these patient responses [19]. The purpose of our second study is to translate the research findings into an evidence-based curriculum taught to Internal Medicine and Family Medicine residents at the University of Massachusetts Medical School. In planning our curriculum, we supplemented current literature on
Table 1 Themes and categories of caring behaviors from focus group data Communicate effectively Listening requires asking and using intuition Give information in appropriate doses (Inform as needed) Choose words carefully and check for meaning Be direct and straightforward but not abrupt Be consistent in your verbal and nonverbal behaviors Exhibit a soft but confident tone, slow pace, and comfortable appearance Arrange to meet healthcare needs Help the patient move forward with the next steps (follow-up) Act quickly and decisively while preserving patient autonomy Respectful Know the patient but focus on the problem Offer hope but be realistic Apologize after an error Empathic Offer measured empathy Carefully craft empathic statements
delivering bad news, helping patients to make a transition from curative to palliative care, and in disclosing a medical error, with our research findings that incorporated patient perspectives on these three challenging tasks. This report presents the curriculum and residents perception of its value and impact (Table 1). 2. Methods We carried out several steps in order to derive curriculum content. Our first study’s focus was designed to generate patient viewpoints about caring when providers delivered bad news, helped patients make a transition to palliative care, and communicated about medical error. We used previously developed and rated videotapes depicting physician-standardized patient encounters for the three scenarios. In the first study [19], twelve focus groups viewed videotapes of those physicians deemed most and least caring for one of the three scenarios. During the focus groups we asked group members to comment on specific behaviors that they saw in two encounters as caring and uncaring. Transcripts were analyzed qualitatively with methods described previously [19]. We compared the data generated from the focus groups to the existing medical literature to determine whether the focus groups would provide new viewpoints about caring attitudes that we needed to incorporate into our teaching intervention. We then reviewed literature on the individual skills of delivering bad news, transitioning patients to palliative care, and communicating about medical error, and compared the existing literature’s recommendations with our focus group conclusions. We utilized our focus group viewpoints to inform curriculum development of our educational intervention. We designed our curriculum to establishing residents needs by assessing their prior knowledge at the beginning of the workshop, followed by a videotape demonstration of the featured skills utilizing interviews used in the study to give
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participants an example of the skills that we were aiming for. Consistent with having participants learn skills, we then used role plays in small groups to allow participants an opportunity to practice these skills in a safe environment prior to their needing them to perform these during their clinical duties. Cases were developed to include a range of situations in which the skills would be needed. We used acting patients, people trained to accurately portray a role, but also to pay attention to their own reactions and respond to participant-interviewers as themselves, not in a standardized way often done with standardized patients. We evaluated the workshops by asking participants about the workshops’ clarity, ability to hold participant’s interest, utility
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to their clinical practice, and quality (of the presentation and the supporting audio-visual material). 3. Results 3.1. Application of research findings to curriculum Focus group data was organized and adapted to aid in the teaching. Major categories of caring were organized by using the mnemonic CARE (see Table 1). We did this to facilitate organization of a teaching framework that would promote learning and retention of the material delivered to Internal Medicine and Family Medicine residents. This overarching
Table 2 Case scenarios for caring challenges Case 1
Case 2
Case 3
Bad news
54-Year-old with diabetes, worsening control with new neuropathy and retinopathy who will now need to go on insulin
65-Year-old with fatigue and iron deficiency anemia who has a colonic mass identified on colonoscopy and whose pathology just returned and shows a colonic adenocarcinoma
Discussion with the daughter of a 93-year-old who suffered a severe stroke 5 days prior. Your goal is to discuss prognosis, rehabilitation plans, and the low likelihood of recovery to former level of function
Palliative care
64-Year-old woman with dialysis-dependent renal failure, leading her to be wheelchair-bound and dependent in her ADLs. She resides in a nursing home
84-Year-old man with advanced prostate cancer, a recent increase in need for pain control due to worsening metastatic disease, and generalized weakness and poor nutrition since his disease reactivated. Most of his day is spent in bed
She is in the hospital for care of painful infected lower extremity and groin skin ulcers for which there is no curative therapy
His daughter is scheduled to see you today, and you intend to raise enrollment in a hospice care program
59-Year-old woman with severe, coronary artery disease, surgically corrected in the past, but now with a year of progressive angina with minimal activity despite maximal medical therapy and inoperable disease by catheterization. She currently leads a ‘‘bed to chair’’ existence Her cardiologist has concluded that there is little to offer this patient other than a palliative approach. Your goal is to inform her of this decision and discuss options
You go to discuss the prospect of stopping hemodialysis treatments and making the patient ‘‘CMO’’ Medical error
65-Year-old with Type 2 diabetes in the hospital for pneumonia who was given his insulin via tuberculin syringe, not an insulin syringe so that they got 60 units of regular insulin instead of 6 units
Discussion with the adult child of a patient of yours, a 84-year-old Nursing Home resident with a history of seizures. You increased his seizure medications because of the suspicion of seizure activity reported to you at your last appointment 4 weeks ago
The Emergency Department calls today and relates that your patient was unsteady and had fallen and broken his right hip. His anti seizure medication level is in the toxic range. You review the record and realize that you did not check anti seizure medication drug levels since his dose increase. You approach your patient’s child
Patient is a 65-year-old white woman admitted to the ICU for diarrhea and hypotension who is being treated appropriately. Admission chest x-ray shows a large right pleural effusion and hilar adenopathy and multiple pulmonary nodules on the left side of the lung, all thought likely to represent malignant disease You have not seen the patient recently due to a prolonged stay in a rehabilitation hospital from a broken hip. Record review reveals a chest x-ray from 1 year ago that showed pneumonia (you treated this), and an enlarging pulmonary nodule on the right and recommended a follow-up CAT scan. There is no record that a CAT scan had been done You need to discuss the situation with the patient
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Table 3 Focus group and literature findings on caring in challenging circumstances Workshop
Literature
Research findings
Transitioning to palliative care
Elicit patient concerns, goals, values and follow up on responses
Listening deeply (‘‘to every word’’), give information skillfully (neutral tone, patient in charge), support patients individually without abandonment
Acknowledge patients’ emotions, explore meaning, encourage patients to say more Screen for unaddressed emotional concerns Delivering bad news
SPIKES [15] (Setting, elicit Perception, Invitation to disclose, provide Knowledge of disease, Empathize, Summary)
Anticipate bad news, imagine, assess and address cognitive and emotional reactions Convey knowledge of the patient and their situation Make timely referral to trusted colleagues while assuring ongoing presence
Communicating about medical error
Full disclosure of error and reasons
Conduct preliminary investigation to convey reasons for error Facilitate necessary diagnostic and therapeutic tests quickly (work system)
framework was supplemented by more specific findings when it was applied to the individual scenarios. Skills in the three scenarios were detailed under the categories of the CARE mnemonic so that the framework helped participants with their interview tasks. 3.2. Teaching intervention Resident sessions for each of these communication challenges included an interactive plenary, and videotape review of selected encounters focusing on specific skills derived from the research findings. Discussion in the plenary session focused on the participants’ recognition of provider behavior that they saw as caring and uncaring in the encounters, followed by patient viewpoints from the focus groups so that they could compare their views about caring to the patient’s views. Participants then took part in facilitated small group skills practice utilizing trained acting patients who portrayed scenarios in written cases. Case scenrios portrayed by acting patients are seen in Table 2. Feedback on learner performance in these scenarios was given by faculty facilitators, peers and acting patients to reinforce skills done well and those in need of improvement. During feedback, acting patients were encouraged to report on their personal reactions to physician behavior in their role as the patient, not in a standardized way expected of standardized patients. Internal Medicine residents were taught all three 2-hour long modules in 1 day, while Family Medicine residents were taught on three separate days. Each 2-h session consisted of approximately 35 min of the interactive plenary with videotape review, 75 min of role play with feedback, and 10 min of evaluation of the session. Case scenarios are depicted in Table 2.
There were several ways that our curriculum was altered by the research findings. Our focus groups and our teaching emphasized the variation in individual patient viewpoints thus suggesting that the provider needed to utilize an individualized approach in applying skills with the specific patient being addressed. This suggests that even if case descriptions were identical, no two encounters would truly be alike, since different individuals would be involved. While some focus group participants saw providing information as caring, others found the same behavior overwhelming. Across all three scenarios, focus group research informed the teaching content by emphasizing that key features of caring involved listening deeply (‘‘to every word’’), anticipating patient reaction to the information, acknowledging patient concerns, imagining then assessing and addressing cognitive and emotional reactions while avoiding the patient perception of trivializing them. Conveying knowledge of the patient as well as the patient’s situation (husband in one scenario was also sick), praising the patient, reassuring the patient of ongoing care and presence in the case as well as making timely referrals to trusted colleagues were also critical to the perception of caring. Providers also gave information but in a sensitive and skillful way, allowing patients to remain in charge of decisions and delivering information in a way that it would not covertly sway the patient or leave them feeling abandoned. Further detail of how research findings supplemented findings from the medical literature is included in Table 3. Curriculum evaluation data show that the sessions were highly evaluated by both Internal Medicine and Family Medicine residents. Fifty-two residents took part in the workshop and rated the workshop at 4.5 (SD 0.85) for clarity of the presentation, 4.33 (SD 0.90) on quality, and 4. 42 (SD 0.87) for its usefulness in their clinical setting on a rating scale of 1–5 with 1 being that you strongly disagree and 5 being that
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you strongly agree. Resident comments focused on the value of watching video examples of the skills being discussed, the active nature of role play to keep them engaged and working on skills, the feedback and discussion after the role play to help them improve performance, and the engaging faculty who they saw as trying to improve their skills. 4. Discussion and conclusion 4.1. Discussion Gathering patient perspectives on caring through focus groups generated new categories of caring attitudes or behaviors that we applied to our teaching. The category of caring, ‘‘Arranges to meet healthcare needs,’’ suggests that part of caring extends beyond the exam room and what we say to the patient, yet is conveyed through our actions separate from the encounter. Other behaviors that are part of the encounter were seen as highly contextualized by focus group participants, were dependent on individual patient viewpoints, and depended on the give and take between provider and patient that is characteristic of the many unique conversations that take place in exam rooms and hospitals each day. Caring behavior such as giving the ‘‘appropriate’’ amount of information suggests that caring is truly in the ‘‘eye of the beholder.’’ Patient perspectives on communicating about medical errors [14,20] and calls for reporting of errors from accrediting organizations [21] are reinforced by our findings. Our study using patient perspectives reinforced and extends Mazor’s findings, more explicitly calling for assessing and addressing patient emotions, while also suggesting the expectation for follow-up care included taking extra steps to make the system work in a setting where the system has let the patient down. In our teaching, we also emphasized examining one’s own feelings and deciding whether to talk about this with others, because prior studies suggest that physicians feel a need for emotional support at these times [22]. Expert recommendations for delivering bad news include a series of steps [15]. Our data emphasized more than the content of a step-wise approach, but the importance of the process of the interview, assessing patient emotion, reacting and adjusting in real time to refine an approach to individual patient care. In considering communication in palliative care, studies of the patient perspective on these conversations focused on the critical transition from curative to palliative cancer care. These studies point out that many of these conversations are impersonal and technical, yet the authors did not end with clear guidance as to how to optimally perform this challenging skill [10]. Limited literature exists that discusses patient and family viewpoints in talking about palliative care [11,12]. One study talked about six areas of importance, being honest and straightforward in communication, being willing to talk about dying, delivering bad news sensitively, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death [11]. Our study reinforces these opportunistic and reactive skills in which the provider needs to respond to clues and direct questions with
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honesty, while preserving hope for patients nearing the end of life. We applied these findings to our curriculum and delivered a highly evaluated series of workshops with our Internal Medicine and Family Medicine residents. Residents appreciated the teaching methods of using videotaped demonstrations to give them an example of skills that they were striving for combined with the role play that allowed them to practice their skills and get feedback from faculty and peers in situations that were challenging, yet simulated. These findings have significant implications for teaching of communication skills to learners. While prior literature has emphasized a skills-based approach using a discrete skill set that should be carried out systematically and uniformly for a given task [23,24], our study points out that patient’s viewpoints are unique and individualized, patient response is very context dependent, and that the medical interview is a dynamic process. This calls for a more interactive skill set in which the provider utilizes only those skills for a particular task that the patient in front of them needs. This study reinforces the need for providers in the clinic and on the floors of the hospital to repeatedly adjust their behavior to patient responses in the middle of encounters, a skill referred to as reflection-in-action that is not accounted for in much of the previous medical interview teaching [25]. Others have suggested that this is the way that we can unite the worlds of evidence-based medicine and relationship centered care [26] and have suggested that these reactive, in the moment adjustments of our encounters with individual patients to meet their needs can be likened to the creativity of jazz improvisation [27]. Our focus groups data also suggests that the contextualized nature of patient viewpoints may not be amenable to traditional checklists or purely behavioral teaching so commonly used in our medical schools. While standardized patients offer consistent portrayals and have been demonstrated to have excellent reliability and validity, issues important in high-stakes evaluation exercises [28], our study points out the difference between standardized patient exercises and clinical care. Our study reinforces our choice to use acting patients, not standardized patients for the role plays in this curriculum. We trained our patients to play a certain role, but in giving feedback, we asked them to respond as themselves and the way that they felt during the encounter. There are several limitations of this study. Scenarios depicted included three challenging scenarios in which patients are likely to have multiple challenges. Therefore, patient viewpoints regarding these scenarios may not generalize to all scenarios or all communication skills teaching. While our focus groups reached saturation in viewpoints, other viewpoints of non-volunteers may not be represented. We also did not determine whether any of our focus group participants had ever received bad news, had experience with transitioning to palliative care, or experienced a medical error. Patient viewpoints from groups with experience with these scenarios might have yielded additional viewpoints. With regard to our curriculum implemented, we are only reporting on evaluation of sessions, not evaluation of skills. Next steps include looking
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at methods of evaluating these sessions that entail having participants view video vignettes in which they are asked to respond in writing to a communication challenge similar to those presented in the workshop presented by the patient in the video. We are analyzing vignette responses before and after the intervention and attempting to correlate their responses with evaluation of their skills on the hospital wards as assessed by their faculty physicians. 4.2. Conclusion Teaching about caring attitudes and behaviors is altered when research findings of patient perspectives supplement expert opinion. Our research findings reinforce the principles of relationship-centered care in which behavior is repeatedly adjusted to meet patient needs [29]. This is consistent with other literatures view of communication expertise, in which action is followed by reflection with subsequent adjustment of communication behavior in real time. Communication expertise suggests that in addition to eliciting and providing information, providers must be able to anticipate patient’s reactions, recognize and respond to patient clues, plan and choose a strategy effectively ‘on the fly,’ reflect on one’s thoughts, feelings and behaviors, assess one’s own performance, and understand the perspectives of others [30]. Ways of integrating patient perspectives into communication research and practice should be utilized further, especially in areas where expert opinion predominates 4.3. Practice implications The data suggest that traditional methods of teaching caring attitudes are incomplete because they do not incorporate a research base that includes individualized patient viewpoints. In addition to learning caring behaviors such as empathy, apology, listening, straightforwardness, and displaying expertise, physicians must learn to assess the patient’s perception of caring, and recognize the patient’s ‘caring needs,’ and adjust their behavior to meet those needs during patient encounters. Acknowledgements We thank Heather-Lyn Haley and Kate Sullivan for their assistance with data collection. We thank Gerry Gleich, M.D., Alexander Bount, Ph.D., and Rick Forster, M.D., for their assistance in the teaching of the workshops. Role of funding. This work was supported by a grant from the Arthur Vining Davis Foundation. The funding did not have any role in design or conduct of the study, management, collection or analyses of the data, or preparation, review or approval of this manuscript. Conflict of interest The authors of this paper report no financial, personal or other conflicts of interest in relation to this work.
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[27] Haidet P. Jazz and the ‘art’ of medicine: improvisation in the medical encounter. Ann Fam Med 2007;5:164–9. [28] Matsell D, Wolfish N, Hsu E. Reliability and validity in objective structured clinical examinations. Med Educ 1991;25:293–9. [29] Tresolini CP, Pew-Fetzer Task Force. Health professions education and relationship-centered care. San Francisco: Pew Health Professions Commission; 1994. [30] Quirk M. Intuition and metacognition in medical education: keys to developing expertise. New York: Springer Publishing Company; 2006 .
Applying patient perspectives on caring to curriculum development David Hatem a,*, Kathy Mazor a,c, Melissa Fischer a,c, Mary Philbin a, Mark Quirk b a
Department of Internal Medicine, University of Massachusetts Medical School, 55 Lake Avenue North,Worcester, MA 01655, USA b Department of Family Medicine and Community Health, University of Massachusetts Medical School, Worcester, USA c Meyers Primary Care Institute, University of Massachusetts Medical School, Worcester, USA Received 16 February 2008; received in revised form 18 May 2008; accepted 28 May 2008
Abstract Objective: To report how patient viewpoints on caring inform curriculum development for teaching sessions on delivering bad news, making the transition to palliative care, and communicating about a medical error. Methods: We conducted focus groups that used patients recruited from the surrounding community to view videotapes of physicians delivering bad news, talking with a patient about palliative care, and communicating about a medical error. We used focus group results, combined with evidence from the medical literature to inform curriculum content for workshops conducted with Internal Medicine and Family Medicine residents at the University of Massachusetts Medical School. Results: Patient perspectives on caring gathered through focus groups differed in significant ways from the existing medical literature on caring when providers are communicating in the challenging situations that were depicted. Our data pointed out that individual reactions were unique and sometimes contradictory in that one person saw behavior as caring that others thought was uncaring. Participants often used qualifiers in their comments like ‘‘appropriate’’ amounts of information, ‘‘measured’’ empathy, chooses words carefully to reflect the relative nature of caring. ‘‘Arranges to meet healthcare needs,’’ an issue that extends beyond the encounter, was seen as a new component of caring not previously described. Applying these concepts to curriculum required that we not only focus on the behavioral skills involved in these tasks, but also the processes of assessing patient’s informational and emotional needs, and then taking steps to meet them, while adjusting behavior in real time to meet patients needs for caring. Workshops delivered were highly evaluated by residents. Conclusion: Patient perspectives on caring when providers deliver bad news, discuss transitions to palliative care, and communicate about a medical error reinforce that patient expectations for caring are highly contextualized and physician behavior needs to be individualized. We taught residents not only behavioral skills, but also the process skills of anticipating patient reactions, recognizing patient clues, planning and choosing effective strategies on the fly, and assessing one’s own performance characteristic of communication expertise. Practice implications: Teaching caring attitudes with challenging communication tasks requires that learners appreciate and value not only caring behaviors but also learn the process by which they must adjust and titrate their actions to meet patient needs. # 2008 Elsevier Ireland Ltd. All rights reserved. Keywords: Caring attitudes; Patient perspectives; Medical education; Delivering bad news; Medical error; Palliative care
1. Introduction
The secret of the care of the patient is in caring for the patient—Francis Peabody The physician’s caring attitude is essential to the patient’s perception of the quality of healthcare. Accrediting bodies call for care that is ‘‘compassionate, appropriate, and effective’’ [1],
* Corresponding author. Tel.: +1 508 856 5972; fax: +1 508 856 8085. E-mail address: [email protected] (D. Hatem). 0738-3991/$ – see front matter # 2008 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2008.05.020
a sentiment echoed by medical educators [2] and public reporting agencies [3]. There has been a recent focus on developing curricula and training faculty in this area [4–6]. Yet, current research demonstrates that physicians often miss the opportunity to express caring in their interactions with patients. Levinson, for example, found that both primary care physicians and surgeons failed to positively address emotional clues in their interactions with patients in nearly two thirds of the cases reviewed [7]. Evidence in trainees also suggests that patientcentered attitudes, felt by many to be a proxy for caring, decline as students progress through medical school [8]. Several things may contribute to this. Caring is an elusive concept and lacks clear definition. Recent literature that defines caring behaviors
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in clinical care [9] and teaching [4] generated perspectives on caring through expert opinion. Patient perspectives on these topics are less common. While patient perspectives on palliative care [10–12], communicating about medical error [13] and delivering bad news [14] do exist, teaching and learning about these specific situations that represent challenges to caring also rely chiefly on expert opinion [15,16]. The literature that details patient perspectives in these areas demonstrates a significant discrepancy between what patients want to talk about and what physicians are ready to discuss. [14,17,18]. When a medical error is committed literature suggests that patients desire full disclosure of details, assumption of responsibility, an apology, and detailing next steps to take care of the patient [14], while physicians report that 42% would explicitly state that an error occurred, only 19% would volunteer any information about the error’s cause, and 63–92% would not provide specific information about preventing future errors [17,18]. In a study with standardized patients, surgeons who committed an error apologized in only 47% of encounters [18]. This paper presents the second part of a two-part study that first sought to define caring from the patient’s perspective, in situations in which caring is likely to be challenged. The first study demonstrated that (1) patient viewpoints in focus groups differed from trained raters’ views of videotaped encounters in which physicians interviewed standardized patients to help them make transitions to palliative care, hear bad news, and hear about a medical error in their care and (2) individual patient viewpoints were varied and sometimes even contradictory when focus group members viewed videotapes of physicians rated by checklists as particularly caring or uncaring. Opinions of one individual who was thought of as particularly caring were often contradicted by those of others. Contextual features of encounters were found to be critical as demonstrated when participants in the focus groups discussed a relational aspect to caring that they captured in several ways. Participants used qualifiers in some of their comments about providers (gives information in ‘‘appropriate’’ doses; offers measured empathy; carefully crafts empathic statements), describing communication in a way that focused on the process of the interview more than the content, suggesting a give and take or a focus on the relationship between individuals (chooses words carefully and checks for meaning; exhibits a soft but confident tone, slow pace, and comfortable appearance; acts quickly and decisively while preserving patient autonomy), and commented on behavior that extended beyond the encounter (helps the patient move forward with next steps). Thus, rather than being able to define a set of caring behaviors, what emerged is that a key element of caring seemed to be the ability of the provider to anticipate the potential needs of patients, assess and address the individual patient’s perspective, reflect on the patient’s responses and adjust behaviors based on these patient responses [19]. The purpose of our second study is to translate the research findings into an evidence-based curriculum taught to Internal Medicine and Family Medicine residents at the University of Massachusetts Medical School. In planning our curriculum, we supplemented current literature on
Table 1 Themes and categories of caring behaviors from focus group data Communicate effectively Listening requires asking and using intuition Give information in appropriate doses (Inform as needed) Choose words carefully and check for meaning Be direct and straightforward but not abrupt Be consistent in your verbal and nonverbal behaviors Exhibit a soft but confident tone, slow pace, and comfortable appearance Arrange to meet healthcare needs Help the patient move forward with the next steps (follow-up) Act quickly and decisively while preserving patient autonomy Respectful Know the patient but focus on the problem Offer hope but be realistic Apologize after an error Empathic Offer measured empathy Carefully craft empathic statements
delivering bad news, helping patients to make a transition from curative to palliative care, and in disclosing a medical error, with our research findings that incorporated patient perspectives on these three challenging tasks. This report presents the curriculum and residents perception of its value and impact (Table 1). 2. Methods We carried out several steps in order to derive curriculum content. Our first study’s focus was designed to generate patient viewpoints about caring when providers delivered bad news, helped patients make a transition to palliative care, and communicated about medical error. We used previously developed and rated videotapes depicting physician-standardized patient encounters for the three scenarios. In the first study [19], twelve focus groups viewed videotapes of those physicians deemed most and least caring for one of the three scenarios. During the focus groups we asked group members to comment on specific behaviors that they saw in two encounters as caring and uncaring. Transcripts were analyzed qualitatively with methods described previously [19]. We compared the data generated from the focus groups to the existing medical literature to determine whether the focus groups would provide new viewpoints about caring attitudes that we needed to incorporate into our teaching intervention. We then reviewed literature on the individual skills of delivering bad news, transitioning patients to palliative care, and communicating about medical error, and compared the existing literature’s recommendations with our focus group conclusions. We utilized our focus group viewpoints to inform curriculum development of our educational intervention. We designed our curriculum to establishing residents needs by assessing their prior knowledge at the beginning of the workshop, followed by a videotape demonstration of the featured skills utilizing interviews used in the study to give
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participants an example of the skills that we were aiming for. Consistent with having participants learn skills, we then used role plays in small groups to allow participants an opportunity to practice these skills in a safe environment prior to their needing them to perform these during their clinical duties. Cases were developed to include a range of situations in which the skills would be needed. We used acting patients, people trained to accurately portray a role, but also to pay attention to their own reactions and respond to participant-interviewers as themselves, not in a standardized way often done with standardized patients. We evaluated the workshops by asking participants about the workshops’ clarity, ability to hold participant’s interest, utility
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to their clinical practice, and quality (of the presentation and the supporting audio-visual material). 3. Results 3.1. Application of research findings to curriculum Focus group data was organized and adapted to aid in the teaching. Major categories of caring were organized by using the mnemonic CARE (see Table 1). We did this to facilitate organization of a teaching framework that would promote learning and retention of the material delivered to Internal Medicine and Family Medicine residents. This overarching
Table 2 Case scenarios for caring challenges Case 1
Case 2
Case 3
Bad news
54-Year-old with diabetes, worsening control with new neuropathy and retinopathy who will now need to go on insulin
65-Year-old with fatigue and iron deficiency anemia who has a colonic mass identified on colonoscopy and whose pathology just returned and shows a colonic adenocarcinoma
Discussion with the daughter of a 93-year-old who suffered a severe stroke 5 days prior. Your goal is to discuss prognosis, rehabilitation plans, and the low likelihood of recovery to former level of function
Palliative care
64-Year-old woman with dialysis-dependent renal failure, leading her to be wheelchair-bound and dependent in her ADLs. She resides in a nursing home
84-Year-old man with advanced prostate cancer, a recent increase in need for pain control due to worsening metastatic disease, and generalized weakness and poor nutrition since his disease reactivated. Most of his day is spent in bed
She is in the hospital for care of painful infected lower extremity and groin skin ulcers for which there is no curative therapy
His daughter is scheduled to see you today, and you intend to raise enrollment in a hospice care program
59-Year-old woman with severe, coronary artery disease, surgically corrected in the past, but now with a year of progressive angina with minimal activity despite maximal medical therapy and inoperable disease by catheterization. She currently leads a ‘‘bed to chair’’ existence Her cardiologist has concluded that there is little to offer this patient other than a palliative approach. Your goal is to inform her of this decision and discuss options
You go to discuss the prospect of stopping hemodialysis treatments and making the patient ‘‘CMO’’ Medical error
65-Year-old with Type 2 diabetes in the hospital for pneumonia who was given his insulin via tuberculin syringe, not an insulin syringe so that they got 60 units of regular insulin instead of 6 units
Discussion with the adult child of a patient of yours, a 84-year-old Nursing Home resident with a history of seizures. You increased his seizure medications because of the suspicion of seizure activity reported to you at your last appointment 4 weeks ago
The Emergency Department calls today and relates that your patient was unsteady and had fallen and broken his right hip. His anti seizure medication level is in the toxic range. You review the record and realize that you did not check anti seizure medication drug levels since his dose increase. You approach your patient’s child
Patient is a 65-year-old white woman admitted to the ICU for diarrhea and hypotension who is being treated appropriately. Admission chest x-ray shows a large right pleural effusion and hilar adenopathy and multiple pulmonary nodules on the left side of the lung, all thought likely to represent malignant disease You have not seen the patient recently due to a prolonged stay in a rehabilitation hospital from a broken hip. Record review reveals a chest x-ray from 1 year ago that showed pneumonia (you treated this), and an enlarging pulmonary nodule on the right and recommended a follow-up CAT scan. There is no record that a CAT scan had been done You need to discuss the situation with the patient
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Table 3 Focus group and literature findings on caring in challenging circumstances Workshop
Literature
Research findings
Transitioning to palliative care
Elicit patient concerns, goals, values and follow up on responses
Listening deeply (‘‘to every word’’), give information skillfully (neutral tone, patient in charge), support patients individually without abandonment
Acknowledge patients’ emotions, explore meaning, encourage patients to say more Screen for unaddressed emotional concerns Delivering bad news
SPIKES [15] (Setting, elicit Perception, Invitation to disclose, provide Knowledge of disease, Empathize, Summary)
Anticipate bad news, imagine, assess and address cognitive and emotional reactions Convey knowledge of the patient and their situation Make timely referral to trusted colleagues while assuring ongoing presence
Communicating about medical error
Full disclosure of error and reasons
Conduct preliminary investigation to convey reasons for error Facilitate necessary diagnostic and therapeutic tests quickly (work system)
framework was supplemented by more specific findings when it was applied to the individual scenarios. Skills in the three scenarios were detailed under the categories of the CARE mnemonic so that the framework helped participants with their interview tasks. 3.2. Teaching intervention Resident sessions for each of these communication challenges included an interactive plenary, and videotape review of selected encounters focusing on specific skills derived from the research findings. Discussion in the plenary session focused on the participants’ recognition of provider behavior that they saw as caring and uncaring in the encounters, followed by patient viewpoints from the focus groups so that they could compare their views about caring to the patient’s views. Participants then took part in facilitated small group skills practice utilizing trained acting patients who portrayed scenarios in written cases. Case scenrios portrayed by acting patients are seen in Table 2. Feedback on learner performance in these scenarios was given by faculty facilitators, peers and acting patients to reinforce skills done well and those in need of improvement. During feedback, acting patients were encouraged to report on their personal reactions to physician behavior in their role as the patient, not in a standardized way expected of standardized patients. Internal Medicine residents were taught all three 2-hour long modules in 1 day, while Family Medicine residents were taught on three separate days. Each 2-h session consisted of approximately 35 min of the interactive plenary with videotape review, 75 min of role play with feedback, and 10 min of evaluation of the session. Case scenarios are depicted in Table 2.
There were several ways that our curriculum was altered by the research findings. Our focus groups and our teaching emphasized the variation in individual patient viewpoints thus suggesting that the provider needed to utilize an individualized approach in applying skills with the specific patient being addressed. This suggests that even if case descriptions were identical, no two encounters would truly be alike, since different individuals would be involved. While some focus group participants saw providing information as caring, others found the same behavior overwhelming. Across all three scenarios, focus group research informed the teaching content by emphasizing that key features of caring involved listening deeply (‘‘to every word’’), anticipating patient reaction to the information, acknowledging patient concerns, imagining then assessing and addressing cognitive and emotional reactions while avoiding the patient perception of trivializing them. Conveying knowledge of the patient as well as the patient’s situation (husband in one scenario was also sick), praising the patient, reassuring the patient of ongoing care and presence in the case as well as making timely referrals to trusted colleagues were also critical to the perception of caring. Providers also gave information but in a sensitive and skillful way, allowing patients to remain in charge of decisions and delivering information in a way that it would not covertly sway the patient or leave them feeling abandoned. Further detail of how research findings supplemented findings from the medical literature is included in Table 3. Curriculum evaluation data show that the sessions were highly evaluated by both Internal Medicine and Family Medicine residents. Fifty-two residents took part in the workshop and rated the workshop at 4.5 (SD 0.85) for clarity of the presentation, 4.33 (SD 0.90) on quality, and 4. 42 (SD 0.87) for its usefulness in their clinical setting on a rating scale of 1–5 with 1 being that you strongly disagree and 5 being that
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you strongly agree. Resident comments focused on the value of watching video examples of the skills being discussed, the active nature of role play to keep them engaged and working on skills, the feedback and discussion after the role play to help them improve performance, and the engaging faculty who they saw as trying to improve their skills. 4. Discussion and conclusion 4.1. Discussion Gathering patient perspectives on caring through focus groups generated new categories of caring attitudes or behaviors that we applied to our teaching. The category of caring, ‘‘Arranges to meet healthcare needs,’’ suggests that part of caring extends beyond the exam room and what we say to the patient, yet is conveyed through our actions separate from the encounter. Other behaviors that are part of the encounter were seen as highly contextualized by focus group participants, were dependent on individual patient viewpoints, and depended on the give and take between provider and patient that is characteristic of the many unique conversations that take place in exam rooms and hospitals each day. Caring behavior such as giving the ‘‘appropriate’’ amount of information suggests that caring is truly in the ‘‘eye of the beholder.’’ Patient perspectives on communicating about medical errors [14,20] and calls for reporting of errors from accrediting organizations [21] are reinforced by our findings. Our study using patient perspectives reinforced and extends Mazor’s findings, more explicitly calling for assessing and addressing patient emotions, while also suggesting the expectation for follow-up care included taking extra steps to make the system work in a setting where the system has let the patient down. In our teaching, we also emphasized examining one’s own feelings and deciding whether to talk about this with others, because prior studies suggest that physicians feel a need for emotional support at these times [22]. Expert recommendations for delivering bad news include a series of steps [15]. Our data emphasized more than the content of a step-wise approach, but the importance of the process of the interview, assessing patient emotion, reacting and adjusting in real time to refine an approach to individual patient care. In considering communication in palliative care, studies of the patient perspective on these conversations focused on the critical transition from curative to palliative cancer care. These studies point out that many of these conversations are impersonal and technical, yet the authors did not end with clear guidance as to how to optimally perform this challenging skill [10]. Limited literature exists that discusses patient and family viewpoints in talking about palliative care [11,12]. One study talked about six areas of importance, being honest and straightforward in communication, being willing to talk about dying, delivering bad news sensitively, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death [11]. Our study reinforces these opportunistic and reactive skills in which the provider needs to respond to clues and direct questions with
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honesty, while preserving hope for patients nearing the end of life. We applied these findings to our curriculum and delivered a highly evaluated series of workshops with our Internal Medicine and Family Medicine residents. Residents appreciated the teaching methods of using videotaped demonstrations to give them an example of skills that they were striving for combined with the role play that allowed them to practice their skills and get feedback from faculty and peers in situations that were challenging, yet simulated. These findings have significant implications for teaching of communication skills to learners. While prior literature has emphasized a skills-based approach using a discrete skill set that should be carried out systematically and uniformly for a given task [23,24], our study points out that patient’s viewpoints are unique and individualized, patient response is very context dependent, and that the medical interview is a dynamic process. This calls for a more interactive skill set in which the provider utilizes only those skills for a particular task that the patient in front of them needs. This study reinforces the need for providers in the clinic and on the floors of the hospital to repeatedly adjust their behavior to patient responses in the middle of encounters, a skill referred to as reflection-in-action that is not accounted for in much of the previous medical interview teaching [25]. Others have suggested that this is the way that we can unite the worlds of evidence-based medicine and relationship centered care [26] and have suggested that these reactive, in the moment adjustments of our encounters with individual patients to meet their needs can be likened to the creativity of jazz improvisation [27]. Our focus groups data also suggests that the contextualized nature of patient viewpoints may not be amenable to traditional checklists or purely behavioral teaching so commonly used in our medical schools. While standardized patients offer consistent portrayals and have been demonstrated to have excellent reliability and validity, issues important in high-stakes evaluation exercises [28], our study points out the difference between standardized patient exercises and clinical care. Our study reinforces our choice to use acting patients, not standardized patients for the role plays in this curriculum. We trained our patients to play a certain role, but in giving feedback, we asked them to respond as themselves and the way that they felt during the encounter. There are several limitations of this study. Scenarios depicted included three challenging scenarios in which patients are likely to have multiple challenges. Therefore, patient viewpoints regarding these scenarios may not generalize to all scenarios or all communication skills teaching. While our focus groups reached saturation in viewpoints, other viewpoints of non-volunteers may not be represented. We also did not determine whether any of our focus group participants had ever received bad news, had experience with transitioning to palliative care, or experienced a medical error. Patient viewpoints from groups with experience with these scenarios might have yielded additional viewpoints. With regard to our curriculum implemented, we are only reporting on evaluation of sessions, not evaluation of skills. Next steps include looking
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at methods of evaluating these sessions that entail having participants view video vignettes in which they are asked to respond in writing to a communication challenge similar to those presented in the workshop presented by the patient in the video. We are analyzing vignette responses before and after the intervention and attempting to correlate their responses with evaluation of their skills on the hospital wards as assessed by their faculty physicians. 4.2. Conclusion Teaching about caring attitudes and behaviors is altered when research findings of patient perspectives supplement expert opinion. Our research findings reinforce the principles of relationship-centered care in which behavior is repeatedly adjusted to meet patient needs [29]. This is consistent with other literatures view of communication expertise, in which action is followed by reflection with subsequent adjustment of communication behavior in real time. Communication expertise suggests that in addition to eliciting and providing information, providers must be able to anticipate patient’s reactions, recognize and respond to patient clues, plan and choose a strategy effectively ‘on the fly,’ reflect on one’s thoughts, feelings and behaviors, assess one’s own performance, and understand the perspectives of others [30]. Ways of integrating patient perspectives into communication research and practice should be utilized further, especially in areas where expert opinion predominates 4.3. Practice implications The data suggest that traditional methods of teaching caring attitudes are incomplete because they do not incorporate a research base that includes individualized patient viewpoints. In addition to learning caring behaviors such as empathy, apology, listening, straightforwardness, and displaying expertise, physicians must learn to assess the patient’s perception of caring, and recognize the patient’s ‘caring needs,’ and adjust their behavior to meet those needs during patient encounters. Acknowledgements We thank Heather-Lyn Haley and Kate Sullivan for their assistance with data collection. We thank Gerry Gleich, M.D., Alexander Bount, Ph.D., and Rick Forster, M.D., for their assistance in the teaching of the workshops. Role of funding. This work was supported by a grant from the Arthur Vining Davis Foundation. The funding did not have any role in design or conduct of the study, management, collection or analyses of the data, or preparation, review or approval of this manuscript. Conflict of interest The authors of this paper report no financial, personal or other conflicts of interest in relation to this work.
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