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Development of a new instrument to assess the quality of physicians' delivery of bad news

Desenvolvimento de um novo instrumento para avaliar a qualidade da comunicação de más notícias pelos médicos.

Abstract:

Introduction:

Most instruments to assess physicians’ delivery of bad news have been developed for patients with cancer and then adapted to other contexts. In clinical practice, some news may not be considered bad by the physicians but may have an important negative impact on the patients’ life. Yet, instruments to assess this communication across diverse clinical settings are needed.

Objective:

To develop, from the patients’ perspective, an instrument to assess how physicians deliver bad news in clinical practice.

Method:

This study was conducted using an exploratory qualitative approach by means of semi-structured, in-depth interviews with 109 patients from two referral hospitals in Brazil. Content analysis was used to generate categories, from which the initial instrument items were developed. The clarity and relevance of the items were evaluated by a committee of 11 medical professionals and 10 patients.

Results:

The instrument included items about the physicians’ attitudes, such as attention, respect, and sincerity, as well as items about sharing information using language that patients could understand. The initial instrument had 19 items, answered in a 5-point Likert scale with labeled endpoints. After evaluation by the committee of judges, 2 items were modified, and 3 were excluded. The final instrument thus had 16 items.

Conclusion:

A new 16-item instrument was developed from the patients’ perspective to assess physicians’ delivery of bad news. After additional validation, this instrument may be useful in real and diverse bad news settings in clinical practice.

Keywords:
Health Communication; Physician-Patient Relations; Questionnaire; Quality; Physician

Resumo:

Introdução:

A maioria dos instrumentos para avaliar a comunicação de más notícias pelos médicos foi desenvolvida para pacientes com câncer e adaptada a outros contextos. Na prática clínica, muitas notícias podem não ser consideradas tão ruins pelos médicos, mas possuem um impacto importante negativo na vida dos pacientes. Assim, ainda há a necessidade de instrumentos para avaliar essa comunicação nos diversos cenários clínicos.

Objetivo:

desenvolver, a partir da perspectiva dos pacientes, um instrumento para avaliar como os médicos comunicam más notícias na prática clínica.

Método:

o estudo foi realizado usando uma abordagem qualitativa exploratória, através de entrevistas semiestruturadas em profundidade com 109 pacientes em dois hospitais de referência no Brasil. A análise de conteúdo foi utilizada para gerar categorias, a partir das quais os itens iniciais do instrumento foram desenvolvidos. A clareza e a relevância dos itens foram avaliadas por um comitê de 11 profissionais médicos e 10 pacientes.

Resultados:

O instrumento incluiu itens sobre as atitudes dos médicos como atenção, respeito e sinceridade e sobre o compartilhamento de informações compreensíveis na linguagem do paciente. O instrumento inicial foi composto por 19 itens, respondidos em uma escala-Likert de 5 pontos. Após avaliação do comitê de juízes, 2 itens foram modificados e 3 foram excluídos; ficando o instrumento final com 16 itens.

Conclusão:

um novo instrumento com 16 itens foi desenvolvido a partir da perspectiva dos pacientes para avaliar a comunicação de más notícias pelos médicos. Após validação adicional, este instrumento poderá ser útil em cenários reais e diversos de más notícias da prática clínica.

Palavras-chave:
Comunicação em saúde; Relação médico-paciente; Instrumento; Qualidade; Médico

INTRODUCTION

Teaching physicians how to deliver bad news (BN) has become an essential part of medical formation, in view of its frequency in clinical practice and importance for the patient and physician11. Girgis A, Sanson-Fisher RW. Breaking bad news: consensus guidelines for medical practitioners. Journal of Clinical Oncology. 1995;13(9):2449-56. http://doi:10.1200/JCO.1995.13.9.2449
http://doi:10.1200/JCO.1995.13.9.2449...
. BN is defined as any news that negatively affects a person’s view of their future22. Buckman R. Breaking bad news: why is it still so difficult? British medical journal (Clinical research ed). 1984;288(6430):1597. http://doi:10.1136/bmj.288.6430.1597
http://doi:10.1136/bmj.288.6430.1597...
. Consequently, the one who determines whether the news is bad is the person who receives it and not the physician. Although receiving a diagnosis of cancer has a negative impact on a person’s view of their future, a variety of other news, such as a diagnosis of diabetes mellitus, neurodegenerative diseases, the need to undergo surgery, or performance limitation due to injuries may also be perceived as BN, depending on patients’ previous experience and expectations33. Berkey FJ, Wiedemer JP, Vithalani ND. Delivering Bad or Life-Altering News. American family physician. 2018;98(2).. Recently, the SARS-CoV-2 (Covid-19) pandemic, with the necessary isolation, has challenged physicians regarding how to deliver BN to patients and families44. Castro AA, Chazan AC, dos Santos CP, Candal EMB, Chazan LF, Ferreira PCS. Teleconsultation in the Context of the Covid-19: Experience of the Palliative Care Team. Revista Brasileira de Educação Médica. 44 (Suppl 01). 2020; https://doi.org/10.1590/1981-5271v44.supl.1-20200368
https://doi.org/10.1590/1981-5271v44.sup...
.

In order to prepare medical students and physicians for this task, the teaching has combined theory and practice55. Rosenbaum ME, Ferguson KJ, Lobas JG. Teaching medical students and residents skills for delivering bad news: a review of strategies. Academic Medicine. 2004;79(2):107-17. http://doi:10.1097/00001888-200402000-00002
http://doi:10.1097/00001888-200402000-00...
, generally based on frameworks that systematize the key steps of BN delivery66. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-11. https://doi.org/10.1634/theoncologist.5-4-302
https://doi.org/10.1634/theoncologist.5-...
)- (88. Narayanan V, Bista B, Koshy C. ‘BREAKS’ protocol for breaking bad news. Indian journal of palliative care. 2010;16(2):61. http://doi:10.4103/0973-1075.68401
http://doi:10.4103/0973-1075.68401...
. Studies on the effects of interventions have included outcome measures such as the participants’ subjective aspects (satisfaction, self-confidence, and comfort), (99. Ghoneim N, Dariya V, Guffey D, Minard CG, Frugé E, Harris LL, et al. Teaching NICU Fellows How to Relay Difficult News Using a Simulation-Based Curriculum: Does Comfort Lead to Competence? Teaching and learning in medicine. 2019;31(2):207-21. http://doi:10.1080/10401334.2018.1490649
http://doi:10.1080/10401334.2018.1490649...
knowledge, performance in Objective Structured Clinical Examination (OSCE) rated by observers, standardized patients1010. Daetwyler CJ, Cohen DG, Gracely E, Novack DH. eLearning to enhance physician patient communication: A pilot test of “doc. com” and “WebEncounter” in teaching bad news delivery. Medical teacher. 2010;32(9):e381-e90. http://doi:10.3109/0142159X.2010.495759
http://doi:10.3109/0142159X.2010.495759...
)- (1616. Gorniewicz J, Floyd M, Krishnan K, Bishop TW, Tudiver F, Lang F. Breaking bad news to patients with cancer: A randomized control trial of a brief communication skills training module incorporating the stories and preferences of actual patients. Patient Education and Counseling. 2016. http://doi:10.1016/j.pec.2016.11.008
http://doi:10.1016/j.pec.2016.11.008...
) and/or analogue patients,1717. Carrard V, Bourquin C, Stiefel F, Schmid Mast M, Berney A. Undergraduate training in breaking bad news: A continuation study exploring the patient perspective. Psycho‐Oncology. 2019. http://doi:10.1002/pon.5276
http://doi:10.1002/pon.5276...
as well as performance in recorded consultations with real patients in relation to the patients’ distress, satisfaction with the consultation, and trust in the physician1818. Fujimori M, Shirai Y, Asai M, Kubota K, Katsumata N, Uchitomi Y. Effect of communication skills training program for oncologists based on patient preferences for communication when receiving bad news: a randomized controlled trial. Journal of Clinical Oncology . 2014;32(20):2166-72. http://doi:10.1200/JCO.2013.51.2756
http://doi:10.1200/JCO.2013.51.2756...
. Nevertheless, the most effective way to teach and learn utilizing simulated patients in medical education is still unknown1919. T D MacLaine, N Lowe, J Dale. The use of simulation in medical student education on the topic of breaking bad news: A systematic review. Patient Education and Counseling . 2021;104(11):2670-2681, doi: http://10.1016/j.pec.2021.04.00
http://10.1016/j.pec.2021.04.00...
. A meta-analysis including 17 articles on interventions involving medical students, residents, and/or physicians demonstrated large improvement in the participants’ performance in the OSCE and moderate improvement in self-confidence1515. Johnson J, Panagioti M. Interventions to improve the breaking of bad or difficult news by physicians, medical students, and interns/residents: a systematic review and meta-analysis. Academic Medicine . 2018;93(9):1400-12. http://doi:10.1097/ACM.0000000000002308
http://doi:10.1097/ACM.0000000000002308...
. The authors suggested further studies to evaluate the effects of interventions in clinical practice with real patients, which has also been highlighted by other authors1616. Gorniewicz J, Floyd M, Krishnan K, Bishop TW, Tudiver F, Lang F. Breaking bad news to patients with cancer: A randomized control trial of a brief communication skills training module incorporating the stories and preferences of actual patients. Patient Education and Counseling. 2016. http://doi:10.1016/j.pec.2016.11.008
http://doi:10.1016/j.pec.2016.11.008...
)- (2020. Langewitz W. Breaking bad news-Quo vadis? Patient Education and Counseling . 2017;100(4):607-9. http://doi:10.1016/j.pec.2017.03.002
http://doi:10.1016/j.pec.2017.03.002...
. One outcome measure should be the patients’ perception on how they received BN.

Nowadays, “most of the research into the delivery of BN has focused on patients with cancer and subsequently, applied to the delivery of bad or serious news in non-oncologic settings” (2121. Schofield P, Beeney L, Thompson J, Butow P, Tattersall M, Dunn S. Hearing the bad news of a cancer diagnosis: the Australian melanoma patient’s perspective. Annals of Oncology. 2001;12(3):365-71. http://doi:10.1023/a:1011100524076
http://doi:10.1023/a:1011100524076...
. Recommendations on how to deliver BN were based on empirical evidence and expert opinions, with little patient-based evidence until 2001,2222. Parker PA, Baile WF, de Moor C, Lenzi R, Kudelka AP, Cohen L. Breaking bad news about cancer: patients’ preferences for communication. Journal of Clinical Oncology . 2001;19(7):2049-56. http://doi:10.1200/JCO.2001.19.7.2049
http://doi:10.1200/JCO.2001.19.7.2049...
),(2323. Fujimori M, Uchitomi Y. Preferences of cancer patients regarding communication of bad news: a systematic literature review. Japanese Journal of Clinical Oncology . 2009;39(4):201-16. http://doi:10.1093/jjco/hyn159
http://doi:10.1093/jjco/hyn159...
when studies investigating the preferences of patients with cancer for receiving BN began to increase. A systematic review on patients’ preferences for receiving BN showed that patients wanted physicians to communicate BN clearly and honestly, using words that they could understand and providing written explanation as needed. They preferred to receive information on whether their illness was cancer, details about the disease, treatment options, chance of a cure, and impacts of treatment on their activities of daily living. Also, patients wanted physicians to show empathy for them and their families, as well as to be hopeful and supportive. The authors emphasized that physicians should tailor their communication to each patient, considering their perspective2323. Fujimori M, Uchitomi Y. Preferences of cancer patients regarding communication of bad news: a systematic literature review. Japanese Journal of Clinical Oncology . 2009;39(4):201-16. http://doi:10.1093/jjco/hyn159
http://doi:10.1093/jjco/hyn159...
. The instruments to assess preferences included the Information Needs/Information Styles Questionnaire2525. Mirza RD, Ren M, Agarwal A, Guyatt GH. Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses. AJOB empirical bioethics. 2019;10(1):36-43. https://doi.org/10.1080/23294515.2018.15432
https://doi.org/10.1080/23294515.2018.15...
and the Measure of Patients’ Preferences (MPP), based on a literature review and expert opinion and validated for patients with cancer2222. Parker PA, Baile WF, de Moor C, Lenzi R, Kudelka AP, Cohen L. Breaking bad news about cancer: patients’ preferences for communication. Journal of Clinical Oncology . 2001;19(7):2049-56. http://doi:10.1200/JCO.2001.19.7.2049
http://doi:10.1200/JCO.2001.19.7.2049...
),(2424. Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Annals of internal medicine. 1980;92(6):832-6. http://doi:10.7326/0003-4819-92-6-832
http://doi:10.7326/0003-4819-92-6-832...
. A study applying the SPIKES protocol to assess the perspective of patients with other life-changing diagnoses was carried out by Mirza et al (2018), and it showed that the protocol largely reflected the preferences of these patients. The authors also suggested additional components, such as assessing the patient’s understanding2525. Mirza RD, Ren M, Agarwal A, Guyatt GH. Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses. AJOB empirical bioethics. 2019;10(1):36-43. https://doi.org/10.1080/23294515.2018.15432
https://doi.org/10.1080/23294515.2018.15...
.

The recommendations for delivery of BN are divided into steps with tasks and behaviors suitable for the participants’ training and assessment by trained observers or standardized patients. However, patients in real clinical scenarios may evaluate communication differently, and instruments for assessing how they received BN are necessary. Delivery of BN is difficult to evaluate, and there is little evidence of assessment of this process; therefore, instruments are needed to measure it, mainly in clinical settings2626. Gutierrez-Sanchez D, García-Gámez M, Leiva-Santos JP, Lopez-Leiva I. Instruments for assessing health professionals’ skills in breaking bad news: protocol for a systematic review of measurement properties. BMJ Open. 2021;11(8):e048019. Published 2021 Aug 6. doi: http:// 10.1136/bmjopen-2020-048019.
http:// 10.1136/bmjopen-2020-048019...
.

Aiming to create a literature-based instrument for patients’ assessment of how doctors delivered BN, we developed a questionnaire consisting of 37 items based on the protocols to guide BN delivery. After the assessment of clarity, relevance, and semantics by a committee of judges, the number of items was reduced to 20. This instrument was applied to 20 patients in a pilot study. However, many of the patients could not understand or remember the instrument items, and we realized that patients assessed the delivery of BN in a more holistic way, not paying much attention to the protocol steps, which were developed to guide the physicians’ practice and training. Thus, we realized that it was necessary to identify, together with the patients, using their own language, what they considered important for the process of delivering BN. Therefore, the aim of this study was to develop an instrument to assess how physicians deliver BN in clinical practice, based on the patients’ perspectives.

METHOD

We used an exploratory qualitative approach and followed the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN)2727. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Quality of life research. 2010;19(4):539-49. https://doi.org/10.1007/s11136-010-9606-8.
https://doi.org/10.1007/s11136-010-9606-...
. Approval was obtained from the institutional review board (number 78418417.0.0000.0121). All subjects who agreed to participate signed the free and informed consent form.

Population

The population consisted of patients from two public referral hospitals in the state of Santa Catarina (Southern Brazil). One was a general hospital, and the other was a hospital attending patients with infectious and respiratory diseases. Patients were invited to participate in the study during regular rounds on the wards (hospitalized patients) and in the ambulatory care unit. The inclusion criteria were: speaking Portuguese and being older than 17 years. The exclusion criteria were: having communication difficulty due to cognitive impairment, decompensated mental disorders, altered state of consciousness, respiratory distress, and uncontrolled pain. The sample was selected by convenience, with an estimated number of 150 participants or until data saturation was reached.

Eleven professionals with expertise in teaching BN delivery and/or dealing with patients who had received a difficult diagnosis or who were in palliative care (4 family physicians, 2 oncologists, 3 palliative care physicians, and 2 internists) and 10 patients participated in the committee of judges.

Data collection

Data were collected between July 2018 and October 2018 through semi-structured, in-person interviews carried out by three interviewers who received previous training and assessment by the research team. The guiding question was: “In your opinion, how should doctors deliver BN to patients?” The answers would often lead to further questioning by the interviewers, such as: “Tell me more”, “Explain it in more detail”, “What else?”, “What do you mean by...?”. The interviews were transcribed, and they lasted about 30 minutes. Data collection continued until saturation was reached. An additional 10% was added as an extra margin to see if any new concept really appeared. Gender, age, level of schooling, and reason for medical care were also collected.

Data analysis

The demographic variables were analyzed using descriptive statistics, and the qualitative data were analyzed using content analysis, carried out independently by 3 researchers, after an initial reading to become acquainted with the reports. They were then coded by meaning units, and the codes were subsequently grouped into categories. Next, the researchers met and discussed the categories. The differences were discussed until a consensus was reached regarding the final categories2828. Ramani S, Mann K. Introducing medical educators to qualitative study design: Twelve tips from inception to completion. Medical teacher . 2016;38(5):456-63. https://doi.org/10.3109/0142159X.2015.1035244
https://doi.org/10.3109/0142159X.2015.10...
), (2929. Zamanzadeh V, Ghahramanian A, Rassouli M, Abbaszadeh A, Alavi-Majd H, Nikanfar A-R. Design and implementation content validity study: development of an instrument for measuring patient-centered communication. Journal of caring sciences. 2015;4(2):165. http://doi: 10.15171/jcs.2015.017
http://doi: 10.15171/jcs.2015.017...
.[Ramani, 2016, Introducing medical educators to qualitative study design: Twelve tips from inception to completion] The items were built from the results of the categorization.

The clarity of the items was assessed using a 4-point Likert scale (1 - very unclear; 2 - unclear; 3 - clear; 4 - very clear) by the committee of judges. As the patients showed difficulty in rating the Likert scale, they were asked to rate the clarity on a numerical scale ranging from 0 to 10 (0 = not at all clear to 10 = totally clear). When clarity was assessed by at least one expert as “unclear”, the item was reviewed, and, if considered “very unclear”, it was excluded. When clarity was rated by the patients as 7 or 8, the item was reviewed; if the score was below 7, the item was excluded.

The relevance of the items was evaluated by the experts on a 4-point Likert scale (1 - irrelevant; 2 - low relevance; 3 - moderate relevance; 4 - high relevance). The answers were calculated to measure the relevance of the items using the content validity ratio (CVR). The minimum CVR for the total of 11 experts considered is 0.59 (3030. Lawshe CH. A quantitative approach to content validity. Personnel Psychology. 1975;28(4):563-575. http://doi: 10.1111/j.1744-6570.1975.tb01393.x
http://doi: 10.1111/j.1744-6570.1975.tb0...
.

For the patients’ assessment of the relevance of the items, a card with 35 round golden stickers was given to them, and they were instructed to place as many “gold coins” as they wished on the items they considered more important; it was not necessary to put coins on all of them, only on those they considered important.

The IBM® SPSS Statistics 22.0 program for Windows (SPSS, Chicago, IL, USA) was used in the analyses.

RESULTS

Demographic data

One hundred and nine patients were interviewed, 66 of them from the general university hospital (60.5%; 95%CI = 49.3 - 71.7) and 43 from the hospital attending patients with respiratory and infectious diseases (39.5%; 95%CI = 32.3 - 46.7). The participants’ median age was 49 years (P25-75 = 35.0 - 61.0); 50 of them were male (45.9%; 95%CI = 33.5 - 54.3), and 59 were female (54.1%; 95%CI = 44.2 - 64.0). Regarding the level of schooling, 42 participants had incomplete elementary school (38.5%); 14 had complete elementary school (12.8%); 8 had incomplete high school (7.3%); 35 had complete high school education (32.1%), and 10 had higher education (9.3%). The most frequent reasons for medical care reported by the participants were cancer, AIDS, the need to undergo abdominal surgical procedures, and respiratory illnesses.

Development of items

Table 1 displays the categories and subcategories with some illustrative quotations. Eighteen items were developed based on the content analysis. One item “[…] asked what I already knew about my health problem” was added because of its importance according to the experts and its frequency in the BN delivery protocols, resulting in a total of 19 items, as displayed in Table 2.

Table 1
Categories, subcategories and illustrative quotations from the content analysis on patients’ preferences to receive bad news (n = 109).
Table 2
Assessment of the relevance of the items according to the patients’ judgement.

Evaluation by the Committee of Judges

Only two items (5 and 19) were not considered relevant by the professional experts and were removed from the instrument: “[…] talked before about the possibility of bad news” (CVR = 0.45) and “[…] treated me as a human being” (CVR = 0.27). The CVR of the remaining items ranged from 0.82 to 1. Among the items initially considered relevant, only two were rated as ‘unclear’ by one of the 11 experts: the item “[…] gave me no hope”, which was modified, and the item “[…] went straight to the point”. The latter item was removed from the instrument, because the experts considered the item controversial and ambiguous as to whether it was a positive or negative aspect of BN delivery quality. The item “[…] asked if I would like a family member to be present” was considered only “clear” by one of the experts and was also reformulated.

In regard to the patients’ evaluation, all items received a mean score between 8.5 and 10 regarding their clarity. The items “[…] asked what I already knew about my health problem” and “[…] gave me no hope” received the lowest scores (8.5 and 8.9, respectively). Thus, the questionnaire was not modified. Table 2 shows the patients’ assessment of the items’ relevance. We chose not to remove any item from the questionnaire before conducting the subsequent steps of instrument validation.

The instrument

A Portuguese-language version of the instrument was developed to be self-applied or administered by an interviewer, consisting of instructions, demographic data, and 16 items. A 5-point scale with labeled endpoints-(1 = “strongly disagree” and 5 = “strongly agree”) was chosen for assessment. The 16 items of the instrument are displayed in the Portuguese-language version in the supplementary material.

DISCUSSION

We developed an instrument to assess how physicians deliver BN, consisting of 16 items based on the perception of real patients. One aspect frequently mentioned by the patients was honesty. In the interviews, we observed that most patients expected to be told the truth. Some patients expected the doctor to discern and determine the appropriate time and how much to say, considering each patient’s individual situation. In contrast, other patients preferred physicians to communicate with the family first. These findings are consistent with those of another study, which also identified differences in patients’ preferences for truth-telling3131. Igier V, Muñoz Sastre MT, Sorum PC, Mullet E. A mapping of people’s positions regarding the breaking of bad news to patients. Health communication. 2015;30(7):694-701. http://doi:10.1080/10410236.2014.898013
http://doi:10.1080/10410236.2014.898013...
) and in the MPP instrument, whose items include aspects such as honesty in the transmission of information (“doctor is honest about the severity of my condition”) and considering a family member as a recipient of the news2222. Parker PA, Baile WF, de Moor C, Lenzi R, Kudelka AP, Cohen L. Breaking bad news about cancer: patients’ preferences for communication. Journal of Clinical Oncology . 2001;19(7):2049-56. http://doi:10.1200/JCO.2001.19.7.2049
http://doi:10.1200/JCO.2001.19.7.2049...
.

The participants stressed the importance of the presence of a person trusted by the patient at the time of BN delivery. This aspect is mentioned in the ABCDE protocol (“arrange for the presence of a support person and appropriate family”)77. VandeKieft GK. Breaking bad news. Am Fam Physician. 2001;64(12): 1975-8. and in the MMP instrument (“having a doctor inform my family members about my diagnosis”), which mentions the presence of family at the time of delivering the news2222. Parker PA, Baile WF, de Moor C, Lenzi R, Kudelka AP, Cohen L. Breaking bad news about cancer: patients’ preferences for communication. Journal of Clinical Oncology . 2001;19(7):2049-56. http://doi:10.1200/JCO.2001.19.7.2049
http://doi:10.1200/JCO.2001.19.7.2049...
.

Clearly understanding “what the patient knows” about their health problem before delivering the news is recommended in some protocols66. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-11. https://doi.org/10.1634/theoncologist.5-4-302
https://doi.org/10.1634/theoncologist.5-...
),(88. Narayanan V, Bista B, Koshy C. ‘BREAKS’ protocol for breaking bad news. Indian journal of palliative care. 2010;16(2):61. http://doi:10.4103/0973-1075.68401
http://doi:10.4103/0973-1075.68401...
),(3232. Quill T CA, Gracey C, Seaver M, Novack DH, Daetwyler CJ, Clark W. DocCom module 33: Giving Bad News. Philadelphia,PA: Drexel University College of Medicine in collaboration with the American Academy on Communication in Healthcare. http:// webcampus.drexelmed.edu/doccom/4. Accessed 2013 Oct 27. 2006.
http:// webcampus.drexelmed.edu/doccom/4...
. We speculate that this was not mentioned by our patients because, although it is an aspect of the interview that facilitates communication for the doctor, patients may not perceive it as essential. However, we believe that it was important to include this item in our instrument, because it helps to introduce the subject and maintain a dialogue with the patient, and because it was strongly recommended in other protocols.

Regarding whether or not the doctor should prepare the patient before delivering the news, we found divergent opinions. Some patients prefer that the doctor go “straight to the point”, while others prefer that physicians “speak slowly or give tips until they notice it”. This difference might be due to cultural factors, as well as differences in educational background, gender, and age, as reported by other authors2424. Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Annals of internal medicine. 1980;92(6):832-6. http://doi:10.7326/0003-4819-92-6-832
http://doi:10.7326/0003-4819-92-6-832...
), (3333. Abazari P, Taleghani F, Hematti S, Ehsani M. Exploring perceptions and preferences of patients, families, physicians, and nurses regarding cancer disclosure: a descriptive qualitative study. Supportive Care in Cancer. 2016;24(11):4651-9. https://doi.org/10.1007/s00520-016-3308-x
https://doi.org/10.1007/s00520-016-3308-...
), (3434. Marschollek P, Bąkowska K, Bąkowski W, Marschollek K, Tarkowski R. Oncologists and Breaking Bad News-From the Informed Patients’ Point of View. The Evaluation of the SPIKES Protocol Implementation. Journal of Cancer Education. 2018:1-6. https://doi.org/10.1007/s13187-017-1315-3
https://doi.org/10.1007/s13187-017-1315-...
. With respect to the delivery of the information itself, clear and simple language was mentioned, and the item “used words that I could understand” reflects the patients’ preference in this regard. Makoul et al., in their Communication Assessment Tool to measure physician communication skills developed from the patients’ point of view, also demonstrated the importance of clear language (“talked in terms I could understand”) (3535. Makoul G, Krupat E, Chang C-H. Measuring patient views of physician communication skills: development and testing of the Communication Assessment Tool. Patient Education and Counseling . 2007;67(3):333-42. https://doi.org/10.1016/j.pec.2007.05.005
https://doi.org/10.1016/j.pec.2007.05.00...
. However, the item related to language initially proposed in the MMP instrument (“giving information in simple, clear, language”) was eventually removed from the final version after validation2222. Parker PA, Baile WF, de Moor C, Lenzi R, Kudelka AP, Cohen L. Breaking bad news about cancer: patients’ preferences for communication. Journal of Clinical Oncology . 2001;19(7):2049-56. http://doi:10.1200/JCO.2001.19.7.2049
http://doi:10.1200/JCO.2001.19.7.2049...
.

The physician’s attitude during BN delivery appeared as an important part of the construct and was represented in some items of our instrument, such as […] “being attentive”, “being respectful”, “caring about” [...]. Understanding the patients’ emotions, feelings, and concerns appears in the instrument proposed by Makoul et al. (“showed care and concern”)3535. Makoul G, Krupat E, Chang C-H. Measuring patient views of physician communication skills: development and testing of the Communication Assessment Tool. Patient Education and Counseling . 2007;67(3):333-42. https://doi.org/10.1016/j.pec.2007.05.005
https://doi.org/10.1016/j.pec.2007.05.00...
. It was also cited in the Consultation and Relational Empathy (CARE) Measure (“showing care and compassion”)3636. Mercer SW, Maxwell M, Heaney D, Watt G. The consultation and relational empathy (CARE) measure: development and preliminary validation and reliability of an empathy-based consultation process measure. Family practice. 2004;21(6):699-705. https://doi.org/10.1093/fampra/cmh621
https://doi.org/10.1093/fampra/cmh621...
and in the Jefferson Scale of Patient’s Perceptions of Physician Empathy (JSPPPE) (“understands my emotions, feelings and concerns”)3737. Tavakol S, Dennick R, Tavakol M. Psychometric properties and confirmatory factor analysis of the Jefferson Scale of Physician Empathy. BMC medical education. 2011;11(1):54. https://doi.org/10.1186/1472-6920-11-54
https://doi.org/10.1186/1472-6920-11-54...
. When doctors demonstrate concern for their patients’ feelings, it is quite helpful and provides supportive actions.

Therefore, our study showed that physicians’ performance in BN delivery is perceived by patients in a more integrated manner, in alignment with MacLeod, who had already mentioned a less fragmented patient’s view of how doctors report news, reinforcing honesty and empathic communication as a basis for BN delivery3838. MacLeod M. Communicating bad news to patients in circumstances in which there is no protocol. Journal of Palliative Medicine . 2006;9(2):243-. https://doi.org/10.1089/jpm.2006.9.24
https://doi.org/10.1089/jpm.2006.9.24...
. However, we emphasize the importance of systematic teaching. The steps exist to facilitate the teaching-learning method, but the communication process was perceived by patients as a whole. Thus, the doctors’ attitudes towards their patients could be seen in a more global manner within an empathic and cordial relationship. While a well-trained simulated patient can identify the steps based on a checklist, the impact of these steps is what patients perceive. If we want to assess real patients’ perception of how doctors communicate BN, we need to understand that the patients’ view is more global and valued according to attitudes perceived throughout the process.

One limitation of our study was that only patients from public hospitals were included. However, as Brazil has a unified health system, patients with different levels of schooling and diseases were included.

CONCLUSION

A new 16-item instrument was developed to assess how physicians deliver BN. After further validation with a representative sample, the instrument may be useful for patients to assess the quality of the physicians’ performance in delivering BN in actual clinical practice.

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  • 2
    Evaluated by double blind review process.
  • SOURCES OF FUNDING

    The authors declare no sources of funding related to this study.

Edited by

Chief Editor: Rosiane Viana Zuza Diniz. Associate editor: Pedro Tadao Hamamoto Filho.

Publication Dates

  • Publication in this collection
    26 July 2022
  • Date of issue
    2022

History

  • Received
    08 May 2022
  • Accepted
    11 May 2022
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