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Education
Should we involve terminally ill patients in teaching medical students? A systematic review of patient’s views Dylan Gareth Harris,1 Bernadette Coles,2 Hannah May Willoughby3
▸ Additional material is published online only. To view please visit the journal online (http://dx.doi.org/10.1136/ bmjspcare-2013-000535). 1
Department of Palliative Care, Prince Charles Hospital, Merthyr Tydfil, UK 2 Department of Information Services, Cardiff University, Velindre Hospital, Cardiff, UK 3 Department of Postgraduate General Practice Education, Cardiff University School of Medicine, Cardiff, UK Correspondence to Dr Dylan Harris, Department of Palliative Care, Prince Charles Hospital, Merthyr Tydfil CF47 9DT, UK; [email protected] Received 12 June 2013 Revised 18 December 2013 Accepted 19 January 2014
To cite: Harris DG, Coles B, Willoughby HM. BMJ Supportive & Palliative Care Published Online First: [ please include Day Month Year] doi:10.1136/bmjspcare-2013000535
ABSTRACT Objective To review available published research that has explored how terminally ill patients feel about being involved in undergraduate medical teaching. Methods A systematic review using narrative synthesis. Qualitative or quantitative publications were included if they directly explored the views of adult patients, with a terminal diagnosis, about their involvement in undergraduate clinical teaching. Results Seven publications met the inclusion criteria: one case report, one qualitative study and five questionnaire-based studies. A total of 269 patients were included across all studies. Patients were predominantly studied in a hospice or hospice day care setting. Both patients who had, and who had not, previously been involved in student teaching were captured by the included publications. In general, the views of patients were highly positive: overall 85%–100% were in favour of involvement in teaching. There were also some negative aspects, such as: concerns about being physically examined by a student; finding involvement in teaching tiring; feeling unable to decline consent to participate. Conclusions An assumption that clinical undergraduate medical teaching involving terminally ill patients may be too burdensome is not reflected overall in studies that have sought the views of the patients themselves. Understanding the patient’s perspective provides a number of practical points in relation to how clinical teaching should be adapted in this patient group; for example, using smaller student group sizes; direct supervision if physical examination performed; short encounters with multiple patients rather than a longer encounter with one patient; adequate informed consent beforehand and without the students automatically being present.
Harris DG, et al. BMJ Supportive & Palliative Care 2014;0:1–9. doi:10.1136/bmjspcare-2013-000535
INTRODUCTION Tomorrow’s doctors must have the knowledge, skills and understanding to relieve pain and distress, and care for the dying.1 There are well-documented concerns about how unprepared junior doctors may be for this part of their role, both from senior clinicians and the junior doctors themselves.2–7 Junior doctors implicate lack of exposure during their training and ‘being kept and keeping away from’ dying patients.3–12 Senior clinicians worry about ‘a young doctor who is scared of meeting a dying patient because they’ve not met somebody like that before, and nobody has given them any confidence to’.13 The UK General Medical Council sets out the knowledge, skills and behaviours that medical students should learn in Tomorrow’s doctors,1 and specifically acknowledges the importance of care of patients at the end of life. Current medical school curricula use a number of teaching techniques to facilitate this: casebased learning, role-play, workshops, seminars and also clinical interaction with ‘real’ terminally ill patients. Learning from patients, rather than just learning about patients, is not a new concept in medical education. Indeed, William Osler in the early 20th century wrote: ‘He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all … the best teaching is that taught by the patient himself.’14 This is echoed by the medical graduates of today: ‘I realized that no matter how much I had been taught in the classroom about … palliative care/end of life issues,
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Education Table 1 Characteristics and quality of publications included in final review (N=7)
Reference Arolker et al
25
Finlay et al26 Franks and Rudd27
Gillon et al28 Hayes29
Lefroy30
McKeown et al31
Aim/research question
Design
Participants and sample size
To explore and compare the views of hospice patients and healthcare staff about patient involvement in medical student teaching To evaluate an undergraduate oncology patient attachment from the patient’s experience Views and opinions of patients involved in teaching of (medical) students at a hospice
Qualitative study using semistructured interviews
15 patients from day hospice (three patients) and inpatient hospice (13 patients). Response rate: not given 40 oncology patients. Response rate: 19%
Fair
22 hospice inpatients. Response rate: 88%
Fair
122 hospice inpatients. Response rate: 45% 42 hospice inpatients. Response rate: 100%
NA (abstract only)
Case study of 1 patient
1 patient
NA (single case study)
Questionnaire (six Likert-style questions)
27 hospice inpatients. Response rate: 100%
Fair
Is the traditional teaching ward round appropriate in a palliative care unit? To understand the views of hospice inpatients on the acceptability and perceived importance of medical students physically examining them Does teaching help or harm the patient? Does it add sufficient value to the medical students’ learning programme? Is damage limitation needed for the patient and the students? To assess patients’ attitudes to medical students and undergraduate training in a hospice setting
Questionnaire (20-item)
Questionnaire (11-item, mixture of open/closed questions) Questionnaire Questionnaire (five Likert-style questions and an open question)
it was this very real patient encounter which taught me the most’.11 There is a well-published argument for direct interaction, and learning from, terminally ill patients in undergraduate medical education.13 15–18 There is also a concern about the potential impact on these patients who are a frail and vulnerable group.19 Some health professionals have described a need to protect these patients from students who may not be able to interact with them appropriately.20 Others have argued that this approach may have led to paternalistically ‘protecting’ patients from being invited to participate in teaching, without allowing these patients the autonomy to decide themselves.12 20–22 The aim of this paper is therefore to systematically review published work that has explored terminally ill patient’s views about being involved in undergraduate medical teaching. METHODS The search strategy was developed in collaboration with a healthcare information specialist (BC). Medical subject headings and key words were used to systematically search the following databases: Medline; Premedline: Embase; BNI (British Nursing Index); CINAHL (Cumulative Index to Nursing & Allied Health Literature); ERIC (Education Resource Information Centre); and BEI (British Education Index). Key words included ‘curriculum’, ‘teaching’, ‘learning’, ‘palliative care’, ‘terminal care’, ‘terminally
2
Overall quality of the study: good; fair; poor; very poor
Fair
Good
ill’, ‘patient participation’, ‘program evaluation’ and ‘patient satisfaction’. A synopsis of the search terms can be found in online supplementary appendix 1. The set search timelines were 1980 to March 2013. The reference lists of the identified articles were screened for additional relevant articles. Inclusion criteria for the final review were: publications which were case reports or clinical studies (qualitative or quantitative) exploring the views of adult patients (a) with a terminal diagnosis and (b) specifically evaluating their opinion about involvement in undergraduate clinical teaching. This review did not encompass paediatric patients and articles that did not provide an English language abstract. A shortlist of papers was initially identified using titles and abstracts. The full text was reviewed for papers potentially meeting the inclusion criteria from the information available in the abstract. Two reviewers (DH and HW) independently reviewed the final selection of publications, graded their quality and assimilated them into summary tables (tables 1 and 2). Differences were discussed until consensus was reached. Narrative synthesis23 was used to assimilate the findings of the included publications. Narrative synthesis is an ‘approach to the systematic review and synthesis of findings from multiple studies that relies primarily on the use of words and text to summarise and explain the findings … Whilst it can involve the manipulation of statistical data, the defining characteristic is that is adapts a textual approach to the process of synthesis’.23
Harris DG, et al. BMJ Supportive & Palliative Care 2014;0:1–9. doi:10.1136/bmjspcare-2013-000535
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Education Table 2
Summary of results (qualitative and quantitative)
Positive
Negative
Qualitative
▸ Regaining a purpose: satisfaction in feeling helpful/useful25–27 30 ▸ Teaching as ‘diversional therapy’: distraction and a change to the daily routine27 ▸ Important that future doctors get this experience as a component of their training25–27 30 ▸ Benefit from the compassion received from the student(s) and being treated as an individual25 26
▸ Teaching is tiring27 29 ▸ Potential for sense of obligation to participate25 29 ▸ Concern about potential harm from physical examination (eg, pain, embarrassment)29
Quantitative
▸ It is appropriate to have medical students interacting with patients in the palliative care setting: The hospice environment is ‘very important’ for the training of medical students (27/27 patients, 100%)31; The majority of patients were happy for students to be present on a ward round (106/124 patients, 85%)28; It is ‘mostly’ or ‘very’ acceptable for medical students to interview patients in a hospice (40/42 patients, 95%)29 ▸ Glad they participated/enjoyed: Most patients were happy that they had agreed to take part in medical student teaching (21/22 patients, 95%)27; Participating in teaching was ‘very’ or ‘quite’ enjoyable (27/27 patients, 100%)31 ▸ Benefit from teaching: All patients reported some benefit from contact with a student (40/40 patients, 100%)26; ‘At least some benefit’ from participating in teaching in 25/27 patients, 93%31 ▸ Would be happy to be involved again: The majority would be happy to see a medical student again (21/22 patients, 95%)27; 26/ 27 patients (96%) would ‘definitely’ or ‘probably’ be involved in student teaching again31
▸ Tiredness and fatigue: Some patients found teaching tiring (5/22 patients, 23%)27 ▸ Concern about physical examination 17% (7/42 patients) felt it would be fairly difficult and 2% (1/42 patients) felt it would be very difficult to decline an examination if they did not wish to be examined, 4/42 patients (10%) felt they would feel obliged to consent to examination even if they did not want it29 ▸ Unconsented presence of medical students: Around 12% of patients would not be happy for a medical student to be present on a ward round (15/124 patients, 12.1%)28
RESULTS The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) flow chart in figure 1 outlines the literature review results and process for deriving the final set of included papers. Overall, 1540 publication titles and abstracts were screened (after removing duplicates) from the initial literature research, of which 30 potentially met the inclusion criteria. Of those 30, seven were appropriate to include in the final review. Of those excluded, 12 were studies exploring student views of teaching with terminally ill patients (rather than patient’s views); eight described curriculum or educational theory developments but did not give primary research data on patient’s views; one was a literature review; one was a duplicate publication of the same study; and one explored bereaved family’s views rather than patient perspective. This is summarised in the PRISMA24 flow chart (figure 1). Seven publications were therefore appropriate to be included in the final review.25–31 The characteristics of each paper are summarised is table 1. To assess quality of the references retrieved from the literature search, a validated scoring system for systematically appraising empirical studies with varied methodologies was used where applicable.32 An overall indicator of quality
(by taking an average of scores) is given in table 1. In addition, the authors conducted a thematic analysis of each of the included publications to derive key overarching themes (table 2). Themes were identified on an inductive basis by reading and rereading each of the included publications. Because of the heterogeneity in the quantitative data, the authors were unable to aggregate the data across studies for quantitative meta-analysis. Instead, similar quantitative variables were therefore presented together to compare and contrast across the different studies (table 2). Five of the included references were questionnairebased studies, one a qualitative interview study and one a case report describing the perspectives of a single patient of being involved in teaching. Each paper is summarised briefly in the following discussion. Arolker et al25 conducted a qualitative study by interviewing both patients (inpatient and day care hospice patients) and hospice staff. All the recruited patients were selected because they had been involved in third year undergraduate medical student teaching. The exact nature of the prior teaching that the patients had been involved with is not clearly described. The response rate in this study is also not described, only the number of patients agreeing to participate (15 in total). The key themes, from the patient perspective, were: the
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Education
Figure 1
Flowchart of systematic review literature search.
importance of educating the next generation of doctors; awareness of choice when meeting students (ie, control over the process of whether to meet medical students or not); and wider benefits of the patient–student interaction; for example, ‘they’re treating you as a whole individual’;25 ‘it makes you feel important … spiritually uplifting … fun … therapeutic’.25 The authors concluded that overall ‘patients were overwhelmingly positive towards contributing to medical student teaching and none felt pressured or obliged to participate’.25 While some of the patients in the study accepted the theoretical possibility that a sense of obligation might sway patients towards agreeing to take part in teaching, none attributed that to themselves. Franks and Rudd27 used questionnaires to explore hospice patient’s views after the patients had been involved in medical student teaching at a 25-bed hospice. The medical teaching at the hospice is described as involving year 2 undergraduate medical students in basic clinical skills teaching around history taking and examination. The patients had given their consent to involvement in the bedside teaching 48 h 4
before, and then again on the day of the teaching sessions with the students. It is not clear whether the students were supervised when seeing the patients or practiced history taking and examination and then presented their findings to the tutor. The authors do not given an indication about approximately how long the teaching session would last with each patient. After the teaching session, the patients were given anonymous questionnaires to complete and ward staff (medical or nursing) collected the questionnaires back from the patients later that day. The questionnaires were handed to the patients by the tutor, and the fact that the tutor handed them the questionnaires and that the ward nurses and doctors collected them may have introduced bias to the patient’s answers, albeit that the questionnaires were anonymous. The response rate was high (88%/25 patients) in the sample group and the vast majority (91%) ‘enjoyed’ being involved in teaching and 95% ‘happy that they agreed to take part’. In all, 95% (21 patients) would agree to being seen by students again, and the free text reasons for doing so included: ‘[I] think it
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Education important in their training’; a ‘valuable experience for them’ and, ‘I like to think I can be of help’.27 This study also captured what the patients thought were the most important things for a hospice to impart to students, which included: ‘to help them to talk to patients’; ‘patience and understanding of terminally ill people’; ‘treat patients as individuals’; and ‘patients’ reactions to the ultimate end and approach of different people’. The authors summarised the key gains from the patient’s perspective in two themes: feeling that they had usefully contributed to the future and providing them with diversional therapy, by having people to talk to and helping to pass the day. For the students, they concluded that teaching in this context provided a ‘unique opportunity of learning basic medical skills and experiencing a multi-professional system of care within a hospice’. In their conclusion, they contrast their findings with ‘the preconceptions of many of the nurses who felt protective towards the patients whom they perceived as vulnerable’.27 Similarly, in the other published version of the same study, Franks combined the student and nurses views, and commented that exploring the patient’s opinions ‘revealed much more enthusiasm and positive feedback than had been perceived/anticipated by the nurses’.19 The patients in this study had all therefore been involved in teaching, that is, those who had not consented to be involved in teaching were not given the questionnaires. However, this suggests that as long as the patient is consented beforehand, overall they have a positive experience from being involved (which was evaluated anonymously afterwards in this study). Issues around consent, and how and by who are important and are highlighted in a number of other studies. Finlay et al26 reported an evaluation of an undergraduate medical oncology patient attachment. Third year undergraduate medical students were assigned a cancer patient for 6 months and followed their progress by attending outpatient clinics, investigations and treatments with them and also visiting them at home if possible. During that period, the students had regular tutorials with an assigned tutor alongside a small group of their peers. Patients who had participated were given a questionnaire by the tutor for each group of students, which used 20 questions and free text responses to explore their views on being involved. The response rate was low (40/213, 18.8%). The authors comment that some patients had died or deteriorated and not all tutors had given evaluation forms to patients ‘for a variety of reasons’. The authors do not expand on what proportion had died or deteriorated and what proportion had not been given a questionnaire due to the tutor’s omission (or indeed what the ‘variety of reasons’ for the tutor not doing so were). Over 80% of the patients felt that the oncology project was educationally valuable and all patients reported ‘benefit’ from contact with a
student. The authors include some verbatim comments from the patients included in the study, which were all positive, for example: ‘I feel he [the student] made a great effort to see things from my perspective’; ‘It helped me to not feel ‘just a number’’; ‘It was wonderful to have someone to talk to’. Of additional note, 85% of the students who contributed to the study reported increased confidence in symptom control, dealing with distress and in communication with patients with life-threatening illness. Gillon and colleagues28 more specifically explored patient’s views around the number of staff and students present on consultant ward rounds. Hospice inpatients were asked to complete a questionnaire on the day following a consultant ward round where a varying number of staff and students were present. The 122 patients (45% of the hospice inpatient population studied) who completed the questionnaire reported that in their experience the median number of people on the ward round was 4 (range 2–9) and did not feel that the size of the ward round affected the discussions with their doctor (in 94.4%) or prevented the patient from asking sensitive questions (96.8%). Overall 84% (106 patients) were happy for students to be present on the ward round. Four patients did feel the size of the ward round prohibited sensitive discussions but these patients had not experienced ward rounds with more than four professionals, that is, had not had above ‘average’ numbers of people on the ward round. The authors do not quantify whether those patients gave an indication of how many people would be acceptable on a ward round and whether the configuration of people (doctor, nurse, number of students) was also relevant to them. We do not know if there was a suggestion from those patients as to what number they thought was preferable and acceptable to them. The positive fact that 84% were happy for students to be present conversely means that 12% were not (15/124 and three were ‘unsure’), which is also significant and suggests that healthcare professionals should not just appear with students on a ward round without seeking consent beforehand. Hayes used a questionnaire (either completed alone by the patient or in interview) to specifically explore the views of hospice patients about being examined by medical students.29 Teaching at the hospice used for the study is described as fourth year undergraduate medical students interviewing and examining a patient to later present to a clinician. Unlike a number of the studies reviewed, a large proportion of patients in this study had not previously interacted with medical students (88%, 37/42 patients). In all, 95% of patients felt it was ‘very’ or ‘mostly’ acceptable for medical students to interview hospice patients. Equally, the majority felt it was both acceptable and important for medical students to physically examine patients in a hospice setting (76% felt it ‘very’ or
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Education ‘mostly’ acceptable and 88% felt it ‘very’ or ‘fairly’ important). The majority of others were ‘unsure’ rather than opting for a negative option with respect to both categories. However, patients were also asked how easy they would find it to decline an examination if they did not wish to be examined and while 62% felt it would be ‘very’ or ‘fairly’ easy, 19% felt it would be ‘fairly’ or ‘very’ difficult and four patients (10%) thought they would feel obliged to consent even if they did not want it. Lefroy30 provides a more indepth case study of one patient’s experiences of medical student teaching. The patient participated in year 5 undergraduate medical student tutorials lasting approximately 2 h. The patient himself was involved in designing the lesson plan. The author comments that ‘what I had not anticipated was how helpful the experience would be to him [the patient]’ and the patient himself commented, ‘I was struggling to maintain some points of reference for my continuing life. The request to discuss my situation with students gave me a positive and definite goal’. Finally, McKeown et al31 conducted a questionnaire survey of 27 hospice inpatients. The questionnaire comprised six Likert questions. Patients were given the questionnaire before being involved with a teaching session with medical students (the authors do not describe which year the students are in); the type of teaching is described as ‘interview sessions with suitable patients’. The response rate was 100%. Most (21 patients, 78%) found talking to medical students ‘completely acceptable’ and ‘very enjoyable’ with a further 6 (22%) finding it ‘mostly acceptable’ and ‘quite enjoyable’. Of note, all 27 patients felt that the hospice environment was ‘very important’ for the training of medical students. A total of 26 patients (96%) would ‘definitely’ or ‘probably’ be happy to have further student contact (with one being ‘unsure’). The authors note that ‘no negative opinions’ were expressed in any question. There are some limitations to the published work presently available. In the study by Arolker et al,25 for example, there may be selection bias: patients with positive views being more likely to volunteer to take part. Conversely, one might also argue that patients with strongly opposed negative views may also have been more likely to participate to articulate these views, yet there did not appear to be any strong opposition to participation in this study or the others. A further bias may arise from the fact that in some of the questionnaire studies patients appeared to be approached by hospice staff to offer the questionnaire which was then handed back to them, albeit anonymously.27 31 Some of the studies, for example,25 27 used patients who had already been involved in medical student teaching, which may therefore introduce a selection bias into the samples. But, equally it may be difficult for patients to discuss their views on involvement if 6
they have not engaged in medical student teaching previously. Most of the studies took place in a hospice or hospice day unit setting (Finlay et al26 being the notable exception) and while the aim of this review was to analyse what terminally ill patients feel about being involved in teaching, the data contributing to the review largely relate to hospice inpatients and day centre attendees. We do not therefore know whether this context is relevant, that is, whether responses would be different if patients were asked about student interactions taking place in their own home or for similar patients in the acute hospital inpatient setting. The response rates ranged from 19% to 100%. The mean response rate was therefore 70.4%, which reaches an ‘acceptable’ threshold.33 However, the Finlay et al study26 is an outlier with response rate of 19%. The latter study was different to the others in that it surveyed palliative care patients after being involved for 6 months with medical undergraduate teaching. Given the context of the patient population one would expect a high attrition rate and this seemingly low response rate is not directly comparable with the other studies, which surveyed patients on a much shorter timescale. The Finlay et al26 study adds a useful additional perspective from patients involved with a single student ‘shadowing’ them over a period of months, which contrasts to the other studies that involved a single interaction with a student or group of students. Unfortunately, the authors do not quantify the non-responders in terms of how many had died, how many had ‘deteriorated’ and so no longer able to participate, and how many tutors had ‘omitted to hand evaluation forms’. A very low response rate many lead to bias from skewed responses being reported, as those with the strongest views ( positive or negative) may be over-represented as they may be more likely to respond than others. There are a large number of patients’ views in that study in particular that we do not therefore know about. A number of the authors mention that the participant sample was selected purposively to include ‘appropriate’ or ‘suitable’ patients.27 28 31 This may have intentionally or otherwise selected a subset of hospice patients who are less frail or perhaps earlier in the disease course than the general hospice population, making the results less generalisable to the population as a whole. None of the studies provide a detailed overview of the patient characteristics of the population they included (eg, age, sex, diagnosis, performance status). We do not know if any objective criteria were used to judge ‘suitable’ and it is possible that there was a variation in how different authors applied this term, meaning that the type of patients who were excluded may have not been entirely consistent between studies. While the overall view of patients was highly positive (overall 85%–100% were in favour of
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Education involvement of teaching where quantifiable questions used), the results were not completely positive, as one might expect. But notably the non-positive responses tended to be neutral rather than actually negative towards student teaching. There may potentially be publication bias as an additional contributing factor, with more negative or neutral studies being less likely to be submitted for peer publication. There were also some negative aspects of involvement in teaching that the patients expressed which warrant specific attention. In the study by Arolker et al,25 some patients accepted the theoretical possibility that a sense of obligation might sway patients towards agreeing to take part in teaching. None of those interviewed in that study attributed this to themselves, but this sense of obligation is expressed more directly in some of the findings of the study by Hayes.29 The difficulty in declining consent in the later study more specifically related to physical examination by a student. This had also been specifically explored in the study by Arolker et al25 where patients were asked if the student had examined them and whether this was upsetting or embarrassing, but the authors do not report any negative comments in relation to this specific part of the research interviews. The patient participants in the study by Franks and Rudd27 had also been physically examined by the students and no negative feedback relating to this part of the interaction was reported. However, the questionnaire used in that study did not specifically ask about physical examination and while overall the patients were positive about teaching we do not know if they would have been more neutral or negative towards examination in a similar way to the participant group in the study by Hayes.29 In the study by Hayes,29 a number of patients emphasise the importance of the student being supervised when examining them, rather than the student doing this alone: ‘as long as someone was with them. If the student was unsupervised I would be worried about them prodding somewhere that hurt’; ‘my concern might be that as hospice patients are often in pain more than hospital equivalents, then students would have to be strongly reminded of this, and closely supervised accordingly’. Ensuring the student is supervised when examining the patient, and ensuring the patient is aware of this before the teaching, may reduce some of the patients’ apprehension and also may reduce the number of declines.
DISCUSSION Overall, the available published evidence suggests that patients with a terminal illness are generally positive about being involved in undergraduate medical teaching. There are some negative, neutral or more cautious responses that are important to consider. Those responses in particular are helpful to inform recommendations on how teachers should adapt the
traditional model of bedside teaching in the context of patients with life-limiting illness: ▸ Consider preparing the teaching lesson plan with the patient to avoid particularly sensitive or distressing topics and elicit areas or aspects of their illness for which they may be particularly keen to impart their expert knowledge onto students.30 ▸ Students should be closely supervised. Patients may have specific worries about physical examination and are reassured if examination is performed by the student under direct supervision of a clinician.29 ▸ Patients in this context can change quickly and fluctuate from day to day. Studies where consent was sought well ahead of the teaching (eg, 24–48 h) with a clear explanation of what would be involved, and then reconfirmed immediately prior to the teaching (in the absence of the students) found high patient satisfaction rates (eg,27) and this therefore seems recommendable good practice. This applies to all formats of teaching: around 12% of patients would not want a medical student present on a ward round and consent should be sought beforehand as with any other format of bedside teaching.28 ▸ Some patients find teaching very tiring27 29 (even though they still reported positive benefits from it and this did not specifically deter them from being involved with teaching again). Consider multiple short encounters with several patients rather than a longer encounter with one patient. ▸ The number of students caused concern for some a small proportion of patients.28 29 Consider using very small student groups and ensuring the student is closely supervised (eg, one or two students rather than the traditional ‘up to six’ used in bedside teaching). ▸ Be sensitive to increased protection by colleagues preventing patients with a terminal diagnosis engaging in bedside teaching: allow the patients their own autonomy to decide if they wish to participate. Several studies in this review found that overall patient responses were very positive towards teaching, which was at ‘odds with the preconceptions’ and ‘gatekeeping’ of some professional colleagues.25 27 31 Proper consent (and not just appearing with students) is important. Several studies also highlighted several positive effects on quality of life from teaching that the patients had highlighted, such as helping to overcome boredom, loneliness and sense of lack of purpose and also teaching as a ‘diversional therapy’.25–27 30
Unfortunately, the study by Hayes29 does not expand on what factors the patients felt might make them more empowered to decline consent when they would want to do so, but one could postulate that seeking consent before the teaching session (and without the students present), preferably not by the senior clinician overseeing the care of that patient (or by the student who will be examining them), and with careful explanation of what exactly the teaching session will involve (and for how long) may help in this regard. Further work to explore this issue of patient consent for teaching would be helpful.
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Education Particularly: what patients would want to know about the teaching in advance; how the consent could be done to make them more comfortable in declining when they wish to do so; and is there anything about the content or type of teaching that may make them less likely to decline. This review has focused on the patient’s perspective. The potential impact on the students should also not be overlooked, as should the patients’ carers/relatives, who will often be present by their side for prolonged periods in this context. While all of the publications reviewed are useful, and help us to understand patient’s views, there remain deficits in the current research on this subject area. Most medical schools involve patients in this context in teaching in their undergraduate curricula. There would potentially be great value in standardising how patient feedback was collected (ie, a single questionnaire adopted by all medical schools) to facilitate aggregation of much larger volumes of data (both quantitative and qualitative). Some of the questions in a standardised questionnaire could therefore explore the issues that are unanswered from the research to date (eg, how consent should be obtained, by who and when). CONCLUSIONS The published assumption that clinical undergraduate medical teaching involving terminally ill patients may be too burdensome does not seem to be reflected overall in these studies which have sought the views of the patients themselves, as this clinician realises: ‘I wonder whether that protective instinct is overprotective … patients often surprise you by their willingness … to talk about difficult subjects’.25 There are however useful learning points about how to adapt clinical or bedside teaching in this patient group to everyone’s benefit (eg, using smaller student group sizes than that in the traditional teaching ward round and shorter interactions with multiple patients). Collecting continuous feedback from patients who have been involved in teaching through a standardised questionnaire, and across medical schools in the UK, could add a larger amount of quantitative and qualitative data about patient’s views to what is currently known and also act as quality assurance. Contributors DH developed the initial idea and review protocol. DH and BC developed the search strategy and BC conducted the literature search. DH and HW appraised the retrieved literature. All authors had the opportunity to comment on each draft of the manuscript. Funding None. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
REFERENCES 1 General Medical Council. Tomorrow’s Doctors. 2009 [cited 2013 Apr 25]. http://www.gmc-uk.org/education/undergraduate/ tomorrows_doctors.asp
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2 Cave J, Woolf K, Dacre J, et al. Medical student teaching in the UK: how well are newly qualified doctors prepared for their role caring for patients with cancer in hospital? Br J Cancer 2007;97:472–8. 3 Gibbins J, McCoubrie R, Forbes K. Why are newly qualified doctors unprepared to care for patients at the end of life? Med Educ 2011;45:389–99. 4 Charlton R, Smith G. Perceived skills in palliative medicine of newly qualified doctors in the U.K. J Palliat Care 2000;16:27–32. 5 Fraser HC, Kutner JS, Pfeifer MP. Senior medical students’ perceptions of the adequacy of education on end-of-life issues. J Palliat Med 2001;4:337–43. 6 Williams CM, Wilson CC, Olsen CH. Dying, death, and medical education: student voices. J Palliat Med 2005;8:372–81. 7 Hammel JF, Sullivan AM, Block SD, et al. End-of-life and palliative care education for final-year medical students: a comparison of Britain and the United States. J Palliat Med 2007;10:1356–66. 8 Ahmedzai S. Dying in hospital: the residents’ viewpoint. Br Med J Clin Res Ed 1982;285:712–14. 9 Ratanawongsa N, Teherani A, Hauer KE. Third-year medical students’ experiences with dying patients during the internal medicine clerkship: a qualitative study of the informal curriculum. Acad Med 2005;80:641–7. 10 Binienda J, Schwartz K, Gaspar D. Training in end-of-life care through interaction with dying patients. Acad Med 2001; 76:517. 11 Wear D. “Face-to-face with It”: medical students’ narratives about their end-of-life education. Acad Med 2002;77:271–7. 12 Sullivan AM, Lakoma MD, Block SD. The status of medical education in end-of-life care: a national report. J Gen Intern Med 2003;18:685–95. 13 Gibbins J, McCoubrie R, Maher J, et al. Recognizing that it is part and parcel of what they do: teaching palliative care to medical students in the UK. Palliat Med 2010;24:299–305. 14 Edith Gittings Reid. The great physician a short life of sir William Osler. Oxford University Press; 1931 [cited 2013 Apr 26]. http://archive.org/details/greatphysicianas027916mbp 15 Field D, Wee B. Preparation for palliative care: teaching about death, dying and bereavement in UK medical schools 2000–2001. Med Educ 2002;36:561–7. 16 Lloyd-Williams M, MacLeod RD. A systematic review of teaching and learning in palliative care within the medical undergraduate curriculum. Med Teach 2004;26:683–90. 17 Hillier R, Wee B. From cradle to grave: palliative medicine education in the UK. J R Soc Med 2001;94:468–71; discussion 477–8. 18 Linklater G. Educational needs of foundation doctors caring for dying patients. J R Coll Physicians Edinb 2010;40:13–18. 19 Franks AL. Teaching medical undergraduates basic clinical skills in hospice–is it practical? Postgrad Med J 2000;76:357–60. 20 Wee B, Hughes N. Education in Palliative Care: Building a Culture of Learning. 1st ed. OUP Oxford, 2007. 21 Harris DG. Overcoming the challenges of bedside teaching in the palliative care setting. Bmj Support Palliat Care 2011;1:193–7. 22 Gadoud A, Jones L, Johnson M, et al. Medical students talking to hospice patients. Clin Teach 2012;9:9–13. 23 Jennie Popay HR. Guidance on the conduct of narrative synthesis in systematic reviews: A product from the ESRC Methods Programme. 2006.
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Education 24 Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009;151:264–9. 25 Arolker M, Barnes J, Gadoud A, et al. “They”ve got to learn’—a qualitative study exploring the views of patients and staff regarding medical student teaching in a hospice. Palliat Med 2010;24:419–26. 26 Finlay I, Maughan T, Williams S. Does student teaching harm or help cancer patients? Med Educ 2005;39:1166–7. 27 Franks A, Rudd N. Medical student teaching in a hospice--what do the patients think about it? Palliat Med 1997; 11:395–8. 28 Gillon S, Ward J, Hustwit J, et al. Is the traditional “teaching ward round” appropriate in a palliative care unit? Palliat Med 2010;24:239.
29 Hayes J. Hospice inpatients’ views on physical examination by medical students: is it acceptable? Bmj Support Palliat Care 2012;2:373–5. 30 Lefroy J. Should I ask my patient with cancer to teach students? Clin Teach 2008;5:138–42. 31 McKeown A, Bentley A, Cornbleet M, et al. Letter to editor: a study of patients’ attitudes to medical students in a hospice setting. Palliat Med 2008;22:876–7. 32 Hawker S, Payne S, Kerr C, et al. Appraising the evidence: reviewing disparate data systematically. Qual Health Res 2002;12:1284–99. 33 Kelley K, Clark B, Brown V, et al. Good practice in the conduct and reporting of survey research. Int J Qual Heal Care J Int Soc Qual Heal Care Isqua 2003;15:261–6.
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Should we involve terminally ill patients in teaching medical students? A systematic review of patient's views Dylan Gareth Harris, Bernadette Coles and Hannah May Willoughby BMJ Support Palliat Care published online February 12, 2014
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References
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Education
Should we involve terminally ill patients in teaching medical students? A systematic review of patient’s views Dylan Gareth Harris,1 Bernadette Coles,2 Hannah May Willoughby3
▸ Additional material is published online only. To view please visit the journal online (http://dx.doi.org/10.1136/ bmjspcare-2013-000535). 1
Department of Palliative Care, Prince Charles Hospital, Merthyr Tydfil, UK 2 Department of Information Services, Cardiff University, Velindre Hospital, Cardiff, UK 3 Department of Postgraduate General Practice Education, Cardiff University School of Medicine, Cardiff, UK Correspondence to Dr Dylan Harris, Department of Palliative Care, Prince Charles Hospital, Merthyr Tydfil CF47 9DT, UK; [email protected] Received 12 June 2013 Revised 18 December 2013 Accepted 19 January 2014
To cite: Harris DG, Coles B, Willoughby HM. BMJ Supportive & Palliative Care Published Online First: [ please include Day Month Year] doi:10.1136/bmjspcare-2013000535
ABSTRACT Objective To review available published research that has explored how terminally ill patients feel about being involved in undergraduate medical teaching. Methods A systematic review using narrative synthesis. Qualitative or quantitative publications were included if they directly explored the views of adult patients, with a terminal diagnosis, about their involvement in undergraduate clinical teaching. Results Seven publications met the inclusion criteria: one case report, one qualitative study and five questionnaire-based studies. A total of 269 patients were included across all studies. Patients were predominantly studied in a hospice or hospice day care setting. Both patients who had, and who had not, previously been involved in student teaching were captured by the included publications. In general, the views of patients were highly positive: overall 85%–100% were in favour of involvement in teaching. There were also some negative aspects, such as: concerns about being physically examined by a student; finding involvement in teaching tiring; feeling unable to decline consent to participate. Conclusions An assumption that clinical undergraduate medical teaching involving terminally ill patients may be too burdensome is not reflected overall in studies that have sought the views of the patients themselves. Understanding the patient’s perspective provides a number of practical points in relation to how clinical teaching should be adapted in this patient group; for example, using smaller student group sizes; direct supervision if physical examination performed; short encounters with multiple patients rather than a longer encounter with one patient; adequate informed consent beforehand and without the students automatically being present.
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INTRODUCTION Tomorrow’s doctors must have the knowledge, skills and understanding to relieve pain and distress, and care for the dying.1 There are well-documented concerns about how unprepared junior doctors may be for this part of their role, both from senior clinicians and the junior doctors themselves.2–7 Junior doctors implicate lack of exposure during their training and ‘being kept and keeping away from’ dying patients.3–12 Senior clinicians worry about ‘a young doctor who is scared of meeting a dying patient because they’ve not met somebody like that before, and nobody has given them any confidence to’.13 The UK General Medical Council sets out the knowledge, skills and behaviours that medical students should learn in Tomorrow’s doctors,1 and specifically acknowledges the importance of care of patients at the end of life. Current medical school curricula use a number of teaching techniques to facilitate this: casebased learning, role-play, workshops, seminars and also clinical interaction with ‘real’ terminally ill patients. Learning from patients, rather than just learning about patients, is not a new concept in medical education. Indeed, William Osler in the early 20th century wrote: ‘He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all … the best teaching is that taught by the patient himself.’14 This is echoed by the medical graduates of today: ‘I realized that no matter how much I had been taught in the classroom about … palliative care/end of life issues,
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Education Table 1 Characteristics and quality of publications included in final review (N=7)
Reference Arolker et al
25
Finlay et al26 Franks and Rudd27
Gillon et al28 Hayes29
Lefroy30
McKeown et al31
Aim/research question
Design
Participants and sample size
To explore and compare the views of hospice patients and healthcare staff about patient involvement in medical student teaching To evaluate an undergraduate oncology patient attachment from the patient’s experience Views and opinions of patients involved in teaching of (medical) students at a hospice
Qualitative study using semistructured interviews
15 patients from day hospice (three patients) and inpatient hospice (13 patients). Response rate: not given 40 oncology patients. Response rate: 19%
Fair
22 hospice inpatients. Response rate: 88%
Fair
122 hospice inpatients. Response rate: 45% 42 hospice inpatients. Response rate: 100%
NA (abstract only)
Case study of 1 patient
1 patient
NA (single case study)
Questionnaire (six Likert-style questions)
27 hospice inpatients. Response rate: 100%
Fair
Is the traditional teaching ward round appropriate in a palliative care unit? To understand the views of hospice inpatients on the acceptability and perceived importance of medical students physically examining them Does teaching help or harm the patient? Does it add sufficient value to the medical students’ learning programme? Is damage limitation needed for the patient and the students? To assess patients’ attitudes to medical students and undergraduate training in a hospice setting
Questionnaire (20-item)
Questionnaire (11-item, mixture of open/closed questions) Questionnaire Questionnaire (five Likert-style questions and an open question)
it was this very real patient encounter which taught me the most’.11 There is a well-published argument for direct interaction, and learning from, terminally ill patients in undergraduate medical education.13 15–18 There is also a concern about the potential impact on these patients who are a frail and vulnerable group.19 Some health professionals have described a need to protect these patients from students who may not be able to interact with them appropriately.20 Others have argued that this approach may have led to paternalistically ‘protecting’ patients from being invited to participate in teaching, without allowing these patients the autonomy to decide themselves.12 20–22 The aim of this paper is therefore to systematically review published work that has explored terminally ill patient’s views about being involved in undergraduate medical teaching. METHODS The search strategy was developed in collaboration with a healthcare information specialist (BC). Medical subject headings and key words were used to systematically search the following databases: Medline; Premedline: Embase; BNI (British Nursing Index); CINAHL (Cumulative Index to Nursing & Allied Health Literature); ERIC (Education Resource Information Centre); and BEI (British Education Index). Key words included ‘curriculum’, ‘teaching’, ‘learning’, ‘palliative care’, ‘terminal care’, ‘terminally
2
Overall quality of the study: good; fair; poor; very poor
Fair
Good
ill’, ‘patient participation’, ‘program evaluation’ and ‘patient satisfaction’. A synopsis of the search terms can be found in online supplementary appendix 1. The set search timelines were 1980 to March 2013. The reference lists of the identified articles were screened for additional relevant articles. Inclusion criteria for the final review were: publications which were case reports or clinical studies (qualitative or quantitative) exploring the views of adult patients (a) with a terminal diagnosis and (b) specifically evaluating their opinion about involvement in undergraduate clinical teaching. This review did not encompass paediatric patients and articles that did not provide an English language abstract. A shortlist of papers was initially identified using titles and abstracts. The full text was reviewed for papers potentially meeting the inclusion criteria from the information available in the abstract. Two reviewers (DH and HW) independently reviewed the final selection of publications, graded their quality and assimilated them into summary tables (tables 1 and 2). Differences were discussed until consensus was reached. Narrative synthesis23 was used to assimilate the findings of the included publications. Narrative synthesis is an ‘approach to the systematic review and synthesis of findings from multiple studies that relies primarily on the use of words and text to summarise and explain the findings … Whilst it can involve the manipulation of statistical data, the defining characteristic is that is adapts a textual approach to the process of synthesis’.23
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Education Table 2
Summary of results (qualitative and quantitative)
Positive
Negative
Qualitative
▸ Regaining a purpose: satisfaction in feeling helpful/useful25–27 30 ▸ Teaching as ‘diversional therapy’: distraction and a change to the daily routine27 ▸ Important that future doctors get this experience as a component of their training25–27 30 ▸ Benefit from the compassion received from the student(s) and being treated as an individual25 26
▸ Teaching is tiring27 29 ▸ Potential for sense of obligation to participate25 29 ▸ Concern about potential harm from physical examination (eg, pain, embarrassment)29
Quantitative
▸ It is appropriate to have medical students interacting with patients in the palliative care setting: The hospice environment is ‘very important’ for the training of medical students (27/27 patients, 100%)31; The majority of patients were happy for students to be present on a ward round (106/124 patients, 85%)28; It is ‘mostly’ or ‘very’ acceptable for medical students to interview patients in a hospice (40/42 patients, 95%)29 ▸ Glad they participated/enjoyed: Most patients were happy that they had agreed to take part in medical student teaching (21/22 patients, 95%)27; Participating in teaching was ‘very’ or ‘quite’ enjoyable (27/27 patients, 100%)31 ▸ Benefit from teaching: All patients reported some benefit from contact with a student (40/40 patients, 100%)26; ‘At least some benefit’ from participating in teaching in 25/27 patients, 93%31 ▸ Would be happy to be involved again: The majority would be happy to see a medical student again (21/22 patients, 95%)27; 26/ 27 patients (96%) would ‘definitely’ or ‘probably’ be involved in student teaching again31
▸ Tiredness and fatigue: Some patients found teaching tiring (5/22 patients, 23%)27 ▸ Concern about physical examination 17% (7/42 patients) felt it would be fairly difficult and 2% (1/42 patients) felt it would be very difficult to decline an examination if they did not wish to be examined, 4/42 patients (10%) felt they would feel obliged to consent to examination even if they did not want it29 ▸ Unconsented presence of medical students: Around 12% of patients would not be happy for a medical student to be present on a ward round (15/124 patients, 12.1%)28
RESULTS The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) flow chart in figure 1 outlines the literature review results and process for deriving the final set of included papers. Overall, 1540 publication titles and abstracts were screened (after removing duplicates) from the initial literature research, of which 30 potentially met the inclusion criteria. Of those 30, seven were appropriate to include in the final review. Of those excluded, 12 were studies exploring student views of teaching with terminally ill patients (rather than patient’s views); eight described curriculum or educational theory developments but did not give primary research data on patient’s views; one was a literature review; one was a duplicate publication of the same study; and one explored bereaved family’s views rather than patient perspective. This is summarised in the PRISMA24 flow chart (figure 1). Seven publications were therefore appropriate to be included in the final review.25–31 The characteristics of each paper are summarised is table 1. To assess quality of the references retrieved from the literature search, a validated scoring system for systematically appraising empirical studies with varied methodologies was used where applicable.32 An overall indicator of quality
(by taking an average of scores) is given in table 1. In addition, the authors conducted a thematic analysis of each of the included publications to derive key overarching themes (table 2). Themes were identified on an inductive basis by reading and rereading each of the included publications. Because of the heterogeneity in the quantitative data, the authors were unable to aggregate the data across studies for quantitative meta-analysis. Instead, similar quantitative variables were therefore presented together to compare and contrast across the different studies (table 2). Five of the included references were questionnairebased studies, one a qualitative interview study and one a case report describing the perspectives of a single patient of being involved in teaching. Each paper is summarised briefly in the following discussion. Arolker et al25 conducted a qualitative study by interviewing both patients (inpatient and day care hospice patients) and hospice staff. All the recruited patients were selected because they had been involved in third year undergraduate medical student teaching. The exact nature of the prior teaching that the patients had been involved with is not clearly described. The response rate in this study is also not described, only the number of patients agreeing to participate (15 in total). The key themes, from the patient perspective, were: the
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Education
Figure 1
Flowchart of systematic review literature search.
importance of educating the next generation of doctors; awareness of choice when meeting students (ie, control over the process of whether to meet medical students or not); and wider benefits of the patient–student interaction; for example, ‘they’re treating you as a whole individual’;25 ‘it makes you feel important … spiritually uplifting … fun … therapeutic’.25 The authors concluded that overall ‘patients were overwhelmingly positive towards contributing to medical student teaching and none felt pressured or obliged to participate’.25 While some of the patients in the study accepted the theoretical possibility that a sense of obligation might sway patients towards agreeing to take part in teaching, none attributed that to themselves. Franks and Rudd27 used questionnaires to explore hospice patient’s views after the patients had been involved in medical student teaching at a 25-bed hospice. The medical teaching at the hospice is described as involving year 2 undergraduate medical students in basic clinical skills teaching around history taking and examination. The patients had given their consent to involvement in the bedside teaching 48 h 4
before, and then again on the day of the teaching sessions with the students. It is not clear whether the students were supervised when seeing the patients or practiced history taking and examination and then presented their findings to the tutor. The authors do not given an indication about approximately how long the teaching session would last with each patient. After the teaching session, the patients were given anonymous questionnaires to complete and ward staff (medical or nursing) collected the questionnaires back from the patients later that day. The questionnaires were handed to the patients by the tutor, and the fact that the tutor handed them the questionnaires and that the ward nurses and doctors collected them may have introduced bias to the patient’s answers, albeit that the questionnaires were anonymous. The response rate was high (88%/25 patients) in the sample group and the vast majority (91%) ‘enjoyed’ being involved in teaching and 95% ‘happy that they agreed to take part’. In all, 95% (21 patients) would agree to being seen by students again, and the free text reasons for doing so included: ‘[I] think it
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Education important in their training’; a ‘valuable experience for them’ and, ‘I like to think I can be of help’.27 This study also captured what the patients thought were the most important things for a hospice to impart to students, which included: ‘to help them to talk to patients’; ‘patience and understanding of terminally ill people’; ‘treat patients as individuals’; and ‘patients’ reactions to the ultimate end and approach of different people’. The authors summarised the key gains from the patient’s perspective in two themes: feeling that they had usefully contributed to the future and providing them with diversional therapy, by having people to talk to and helping to pass the day. For the students, they concluded that teaching in this context provided a ‘unique opportunity of learning basic medical skills and experiencing a multi-professional system of care within a hospice’. In their conclusion, they contrast their findings with ‘the preconceptions of many of the nurses who felt protective towards the patients whom they perceived as vulnerable’.27 Similarly, in the other published version of the same study, Franks combined the student and nurses views, and commented that exploring the patient’s opinions ‘revealed much more enthusiasm and positive feedback than had been perceived/anticipated by the nurses’.19 The patients in this study had all therefore been involved in teaching, that is, those who had not consented to be involved in teaching were not given the questionnaires. However, this suggests that as long as the patient is consented beforehand, overall they have a positive experience from being involved (which was evaluated anonymously afterwards in this study). Issues around consent, and how and by who are important and are highlighted in a number of other studies. Finlay et al26 reported an evaluation of an undergraduate medical oncology patient attachment. Third year undergraduate medical students were assigned a cancer patient for 6 months and followed their progress by attending outpatient clinics, investigations and treatments with them and also visiting them at home if possible. During that period, the students had regular tutorials with an assigned tutor alongside a small group of their peers. Patients who had participated were given a questionnaire by the tutor for each group of students, which used 20 questions and free text responses to explore their views on being involved. The response rate was low (40/213, 18.8%). The authors comment that some patients had died or deteriorated and not all tutors had given evaluation forms to patients ‘for a variety of reasons’. The authors do not expand on what proportion had died or deteriorated and what proportion had not been given a questionnaire due to the tutor’s omission (or indeed what the ‘variety of reasons’ for the tutor not doing so were). Over 80% of the patients felt that the oncology project was educationally valuable and all patients reported ‘benefit’ from contact with a
student. The authors include some verbatim comments from the patients included in the study, which were all positive, for example: ‘I feel he [the student] made a great effort to see things from my perspective’; ‘It helped me to not feel ‘just a number’’; ‘It was wonderful to have someone to talk to’. Of additional note, 85% of the students who contributed to the study reported increased confidence in symptom control, dealing with distress and in communication with patients with life-threatening illness. Gillon and colleagues28 more specifically explored patient’s views around the number of staff and students present on consultant ward rounds. Hospice inpatients were asked to complete a questionnaire on the day following a consultant ward round where a varying number of staff and students were present. The 122 patients (45% of the hospice inpatient population studied) who completed the questionnaire reported that in their experience the median number of people on the ward round was 4 (range 2–9) and did not feel that the size of the ward round affected the discussions with their doctor (in 94.4%) or prevented the patient from asking sensitive questions (96.8%). Overall 84% (106 patients) were happy for students to be present on the ward round. Four patients did feel the size of the ward round prohibited sensitive discussions but these patients had not experienced ward rounds with more than four professionals, that is, had not had above ‘average’ numbers of people on the ward round. The authors do not quantify whether those patients gave an indication of how many people would be acceptable on a ward round and whether the configuration of people (doctor, nurse, number of students) was also relevant to them. We do not know if there was a suggestion from those patients as to what number they thought was preferable and acceptable to them. The positive fact that 84% were happy for students to be present conversely means that 12% were not (15/124 and three were ‘unsure’), which is also significant and suggests that healthcare professionals should not just appear with students on a ward round without seeking consent beforehand. Hayes used a questionnaire (either completed alone by the patient or in interview) to specifically explore the views of hospice patients about being examined by medical students.29 Teaching at the hospice used for the study is described as fourth year undergraduate medical students interviewing and examining a patient to later present to a clinician. Unlike a number of the studies reviewed, a large proportion of patients in this study had not previously interacted with medical students (88%, 37/42 patients). In all, 95% of patients felt it was ‘very’ or ‘mostly’ acceptable for medical students to interview hospice patients. Equally, the majority felt it was both acceptable and important for medical students to physically examine patients in a hospice setting (76% felt it ‘very’ or
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Education ‘mostly’ acceptable and 88% felt it ‘very’ or ‘fairly’ important). The majority of others were ‘unsure’ rather than opting for a negative option with respect to both categories. However, patients were also asked how easy they would find it to decline an examination if they did not wish to be examined and while 62% felt it would be ‘very’ or ‘fairly’ easy, 19% felt it would be ‘fairly’ or ‘very’ difficult and four patients (10%) thought they would feel obliged to consent even if they did not want it. Lefroy30 provides a more indepth case study of one patient’s experiences of medical student teaching. The patient participated in year 5 undergraduate medical student tutorials lasting approximately 2 h. The patient himself was involved in designing the lesson plan. The author comments that ‘what I had not anticipated was how helpful the experience would be to him [the patient]’ and the patient himself commented, ‘I was struggling to maintain some points of reference for my continuing life. The request to discuss my situation with students gave me a positive and definite goal’. Finally, McKeown et al31 conducted a questionnaire survey of 27 hospice inpatients. The questionnaire comprised six Likert questions. Patients were given the questionnaire before being involved with a teaching session with medical students (the authors do not describe which year the students are in); the type of teaching is described as ‘interview sessions with suitable patients’. The response rate was 100%. Most (21 patients, 78%) found talking to medical students ‘completely acceptable’ and ‘very enjoyable’ with a further 6 (22%) finding it ‘mostly acceptable’ and ‘quite enjoyable’. Of note, all 27 patients felt that the hospice environment was ‘very important’ for the training of medical students. A total of 26 patients (96%) would ‘definitely’ or ‘probably’ be happy to have further student contact (with one being ‘unsure’). The authors note that ‘no negative opinions’ were expressed in any question. There are some limitations to the published work presently available. In the study by Arolker et al,25 for example, there may be selection bias: patients with positive views being more likely to volunteer to take part. Conversely, one might also argue that patients with strongly opposed negative views may also have been more likely to participate to articulate these views, yet there did not appear to be any strong opposition to participation in this study or the others. A further bias may arise from the fact that in some of the questionnaire studies patients appeared to be approached by hospice staff to offer the questionnaire which was then handed back to them, albeit anonymously.27 31 Some of the studies, for example,25 27 used patients who had already been involved in medical student teaching, which may therefore introduce a selection bias into the samples. But, equally it may be difficult for patients to discuss their views on involvement if 6
they have not engaged in medical student teaching previously. Most of the studies took place in a hospice or hospice day unit setting (Finlay et al26 being the notable exception) and while the aim of this review was to analyse what terminally ill patients feel about being involved in teaching, the data contributing to the review largely relate to hospice inpatients and day centre attendees. We do not therefore know whether this context is relevant, that is, whether responses would be different if patients were asked about student interactions taking place in their own home or for similar patients in the acute hospital inpatient setting. The response rates ranged from 19% to 100%. The mean response rate was therefore 70.4%, which reaches an ‘acceptable’ threshold.33 However, the Finlay et al study26 is an outlier with response rate of 19%. The latter study was different to the others in that it surveyed palliative care patients after being involved for 6 months with medical undergraduate teaching. Given the context of the patient population one would expect a high attrition rate and this seemingly low response rate is not directly comparable with the other studies, which surveyed patients on a much shorter timescale. The Finlay et al26 study adds a useful additional perspective from patients involved with a single student ‘shadowing’ them over a period of months, which contrasts to the other studies that involved a single interaction with a student or group of students. Unfortunately, the authors do not quantify the non-responders in terms of how many had died, how many had ‘deteriorated’ and so no longer able to participate, and how many tutors had ‘omitted to hand evaluation forms’. A very low response rate many lead to bias from skewed responses being reported, as those with the strongest views ( positive or negative) may be over-represented as they may be more likely to respond than others. There are a large number of patients’ views in that study in particular that we do not therefore know about. A number of the authors mention that the participant sample was selected purposively to include ‘appropriate’ or ‘suitable’ patients.27 28 31 This may have intentionally or otherwise selected a subset of hospice patients who are less frail or perhaps earlier in the disease course than the general hospice population, making the results less generalisable to the population as a whole. None of the studies provide a detailed overview of the patient characteristics of the population they included (eg, age, sex, diagnosis, performance status). We do not know if any objective criteria were used to judge ‘suitable’ and it is possible that there was a variation in how different authors applied this term, meaning that the type of patients who were excluded may have not been entirely consistent between studies. While the overall view of patients was highly positive (overall 85%–100% were in favour of
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Education involvement of teaching where quantifiable questions used), the results were not completely positive, as one might expect. But notably the non-positive responses tended to be neutral rather than actually negative towards student teaching. There may potentially be publication bias as an additional contributing factor, with more negative or neutral studies being less likely to be submitted for peer publication. There were also some negative aspects of involvement in teaching that the patients expressed which warrant specific attention. In the study by Arolker et al,25 some patients accepted the theoretical possibility that a sense of obligation might sway patients towards agreeing to take part in teaching. None of those interviewed in that study attributed this to themselves, but this sense of obligation is expressed more directly in some of the findings of the study by Hayes.29 The difficulty in declining consent in the later study more specifically related to physical examination by a student. This had also been specifically explored in the study by Arolker et al25 where patients were asked if the student had examined them and whether this was upsetting or embarrassing, but the authors do not report any negative comments in relation to this specific part of the research interviews. The patient participants in the study by Franks and Rudd27 had also been physically examined by the students and no negative feedback relating to this part of the interaction was reported. However, the questionnaire used in that study did not specifically ask about physical examination and while overall the patients were positive about teaching we do not know if they would have been more neutral or negative towards examination in a similar way to the participant group in the study by Hayes.29 In the study by Hayes,29 a number of patients emphasise the importance of the student being supervised when examining them, rather than the student doing this alone: ‘as long as someone was with them. If the student was unsupervised I would be worried about them prodding somewhere that hurt’; ‘my concern might be that as hospice patients are often in pain more than hospital equivalents, then students would have to be strongly reminded of this, and closely supervised accordingly’. Ensuring the student is supervised when examining the patient, and ensuring the patient is aware of this before the teaching, may reduce some of the patients’ apprehension and also may reduce the number of declines.
DISCUSSION Overall, the available published evidence suggests that patients with a terminal illness are generally positive about being involved in undergraduate medical teaching. There are some negative, neutral or more cautious responses that are important to consider. Those responses in particular are helpful to inform recommendations on how teachers should adapt the
traditional model of bedside teaching in the context of patients with life-limiting illness: ▸ Consider preparing the teaching lesson plan with the patient to avoid particularly sensitive or distressing topics and elicit areas or aspects of their illness for which they may be particularly keen to impart their expert knowledge onto students.30 ▸ Students should be closely supervised. Patients may have specific worries about physical examination and are reassured if examination is performed by the student under direct supervision of a clinician.29 ▸ Patients in this context can change quickly and fluctuate from day to day. Studies where consent was sought well ahead of the teaching (eg, 24–48 h) with a clear explanation of what would be involved, and then reconfirmed immediately prior to the teaching (in the absence of the students) found high patient satisfaction rates (eg,27) and this therefore seems recommendable good practice. This applies to all formats of teaching: around 12% of patients would not want a medical student present on a ward round and consent should be sought beforehand as with any other format of bedside teaching.28 ▸ Some patients find teaching very tiring27 29 (even though they still reported positive benefits from it and this did not specifically deter them from being involved with teaching again). Consider multiple short encounters with several patients rather than a longer encounter with one patient. ▸ The number of students caused concern for some a small proportion of patients.28 29 Consider using very small student groups and ensuring the student is closely supervised (eg, one or two students rather than the traditional ‘up to six’ used in bedside teaching). ▸ Be sensitive to increased protection by colleagues preventing patients with a terminal diagnosis engaging in bedside teaching: allow the patients their own autonomy to decide if they wish to participate. Several studies in this review found that overall patient responses were very positive towards teaching, which was at ‘odds with the preconceptions’ and ‘gatekeeping’ of some professional colleagues.25 27 31 Proper consent (and not just appearing with students) is important. Several studies also highlighted several positive effects on quality of life from teaching that the patients had highlighted, such as helping to overcome boredom, loneliness and sense of lack of purpose and also teaching as a ‘diversional therapy’.25–27 30
Unfortunately, the study by Hayes29 does not expand on what factors the patients felt might make them more empowered to decline consent when they would want to do so, but one could postulate that seeking consent before the teaching session (and without the students present), preferably not by the senior clinician overseeing the care of that patient (or by the student who will be examining them), and with careful explanation of what exactly the teaching session will involve (and for how long) may help in this regard. Further work to explore this issue of patient consent for teaching would be helpful.
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Education Particularly: what patients would want to know about the teaching in advance; how the consent could be done to make them more comfortable in declining when they wish to do so; and is there anything about the content or type of teaching that may make them less likely to decline. This review has focused on the patient’s perspective. The potential impact on the students should also not be overlooked, as should the patients’ carers/relatives, who will often be present by their side for prolonged periods in this context. While all of the publications reviewed are useful, and help us to understand patient’s views, there remain deficits in the current research on this subject area. Most medical schools involve patients in this context in teaching in their undergraduate curricula. There would potentially be great value in standardising how patient feedback was collected (ie, a single questionnaire adopted by all medical schools) to facilitate aggregation of much larger volumes of data (both quantitative and qualitative). Some of the questions in a standardised questionnaire could therefore explore the issues that are unanswered from the research to date (eg, how consent should be obtained, by who and when). CONCLUSIONS The published assumption that clinical undergraduate medical teaching involving terminally ill patients may be too burdensome does not seem to be reflected overall in these studies which have sought the views of the patients themselves, as this clinician realises: ‘I wonder whether that protective instinct is overprotective … patients often surprise you by their willingness … to talk about difficult subjects’.25 There are however useful learning points about how to adapt clinical or bedside teaching in this patient group to everyone’s benefit (eg, using smaller student group sizes than that in the traditional teaching ward round and shorter interactions with multiple patients). Collecting continuous feedback from patients who have been involved in teaching through a standardised questionnaire, and across medical schools in the UK, could add a larger amount of quantitative and qualitative data about patient’s views to what is currently known and also act as quality assurance. Contributors DH developed the initial idea and review protocol. DH and BC developed the search strategy and BC conducted the literature search. DH and HW appraised the retrieved literature. All authors had the opportunity to comment on each draft of the manuscript. Funding None. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
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Should we involve terminally ill patients in teaching medical students? A systematic review of patient's views Dylan Gareth Harris, Bernadette Coles and Hannah May Willoughby BMJ Support Palliat Care published online February 12, 2014
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