UNIVERSIDADE ESTADUAL DE CAMPINAS FACULDADE DE ODONTOLOGIA DE PIRACICABA
CAROLINA GUIMARÃES BONFIM ALVES
ESTRATÉGIAS PARA COMUNICAÇÃO DO DIAGNÓSTICO DE CÂNCER DE BOCA E OROFARINGE: POR QUE FALAR SOBRE ISSO?
STRATEGIES FOR COMMUNICATING ORAL AND OROPHARYNGEAL CANCER DIAGNOSIS: WHY TALK ABOUT IT?
Piracicaba 2019
CAROLINA GUIMARÃES BONFIM ALVES
ESTRATÉGIAS PARA COMUNICAÇÃO DO DIAGNÓSTICO DE CÂNCER DE BOCA E OROFARINGE: POR QUE FALAR SOBRE ISSO?
STRATEGIES FOR COMMUNICATING ORAL AND OROPHARYNGEAL CANCER DIAGNOSIS: WHY TALK ABOUT IT?
Dissertação apresentada à Faculdade de Odontologia de Piracicaba da Universidade Estadual de Campinas como parte dos requisitos exigidos para a obtenção do título de Mestra em Estomatopatologia, na Área de Estomatologia. Dissertation presented to the Piracicaba Dental School of the University of Campinas in partial fulfillment of the requirements for the degree of Master in Stomatopathology, in Stomatology area.
Orientador: Prof. Dr. Alan Roger dos Santos Silva Coorientadora: Profa. Dra. Thaís Bianca Brandão ESTE EXEMPLAR CORRESPONDE A VERSÃO FINAL DA DISSERTAÇÃO DE MESTRADO DEFENDIDA PELA ALUNA CAROLINA GUIMARÃES BONFIM ALVES E ORIENTADA PELO PROF. DR. ALAN ROGER DOS SANTOS SILVA.
Piracicaba 2019
Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – Brasil (CAPES): Código de Financiamento 001
Ficha catalográfica
Universidade Estadual de Campinas
Biblioteca da Faculdade de Odontologia de Piracicaba Marilene Girello - CRB 8/6159
Alves, Carolina Guimarães Bonfim, 1992-
AL87e AlvEstratégias para comunicação do diagnóstico de câncer de boca e orofaringe : por que falar sobre isso? / Carolina Guimarães Bonfim Alves. – Piracicaba, SP : [s.n.], 2019.
AlvOrientador: Alan Roger dos Santos Silva. AlvCoorientador: Thaís Bianca Brandão.
AlvDissertação (mestrado) – Universidade Estadual de Campinas, Faculdade de Odontologia de Piracicaba.
Alv1. Neoplasias bucais. 2. Revelação da verdade. 3. Comunicação em saúde. I. Santos-Silva, Alan Roger, 1981-. II. Brandão, Thaís Bianca, 1982-. III.
Universidade Estadual de Campinas. Faculdade de Odontologia de Piracicaba. IV. Título.
Informações para Biblioteca Digital
Título em outro idioma: Strategies for communicating oral and oropharyngeal cancer
diagnosis : why talk about it?
Palavras-chave em inglês:
Mouth neoplasms Truth disclosure Health communication
Área de concentração: Estomatologia Titulação: Mestra em Estomatopatologia Banca examinadora:
Alan Roger dos Santos Silva [Orientador] Lara Maria Alencar Ramos Innocentini Márcio Ajudarte Lopes
Data de defesa: 16-12-2019
Programa de Pós-Graduação: Estomatopatologia
Identificação e informações acadêmicas do(a) aluno(a)
- ORCID do autor: https://orcid.org/0000-0003-3526-4201 - Currículo Lattes do autor: http://lattes.cnpq.br/5390249603228199
UNIVERSIDADE ESTADUAL DE CAMPINAS FACULDADE DE ODONTOLOGIA DE PIRACICABA
A Comissão Julgadora dos trabalhos de Defesa de Dissertação de Mestrado, em sessão pública realizada em 16 de Dezembro de 2019, considerou a candidata CAROLINA GUIMARÃES BONFIM ALVES aprovada.
PROF. DR. ALAN ROGER DOS SANTOS SILVA
PROFª. DRª LARA MARIA ALENCAR RAMOS INNOCENTINI PROF. DR. MÁRCIO AJUDARTE LOPES
A Ata da defesa, assinada pelos membros da Comissão Examinadora, consta no SIGA/Sistema de Fluxo de Dissertação/Tese e na Secretaria do Programa da Unidade.
DEDICATÓRIA
À minha amada avó Maria Augusta Guimarães Bonfim (in memoriam), que em sua vida, ensinou-me a importância da honra em nossas palavras. Em sua morte, ao findar uma longa batalha contra o câncer, em casa e rodeada por seus filhos, ensinou-me sobre o sentido daquilo que não se verbaliza, mas ressignifica o que realmente importa. Dela guardo o exemplo de fé, integridade e perseverança.
AGRADECIMENTOS
À Deus pelo dom da vida e oportunidades que me permitiram caminhar até aqui. À Universidade Estadual de Campinas, na pessoa do Magnífico Reitor, Prof. Dr. Marcelo Knobel.
À Faculdade de Odontologia de Piracicaba, na pessoa de seu Diretor, Prof. Dr. Francisco Haiter Neto e seu Diretor Associado, Prof. Dr. Flavio Henrique Baggio Aguiar.
À Profa. Dra. Karina Gonzalez Silvério Ruiz, Coordenadora Geral da Pós-graduação da Faculdade de Odontologia de Piracicaba.
Ao Coordenador do Programa de Pós-graduação em Estomatopatologia, Prof. Dr. Márcio Ajudarte Lopes.
Aos professores Pablo Agustin Vargas e Oslei Paes de Almeida, pela oportunidade de fazer parte do programa de Pós-graduação.
Ao meu orientador Prof. Dr. Alan Roger dos Santos Silva por desempenhar um trabalho sério e resignado como docente e pesquisador. Sou grata por ter-me confiado este estudo sob uma orientação brilhante e cuidadosa em que, apesar das minhas dificuldades e limitações, sempre me acolheu com as melhores expectativas. Obrigada por seu exemplo de dedicação e amor no que faz.
À minha coorientadora Dra. Thaís Bianca Brandão por todo apoio e confiança demonstrados viabilizando minha experiência como pesquisadora no Instituto do Câncer do Estado de São Paulo – ICESP. Obrigada por me incentivar e acreditar em meu potencial, mesmo em circunstâncias onde não conseguia percebê-lo.
À Profa. Dra. Ana Carolina Prado Ribeiro (ICESP) por todo suporte e paciência dispensados durante minha estadia no ICESP. Obrigada por me ensinar com seu exemplo de disciplina, eficiência e profissionalismo.
À Dra. Karina Morais Faria (ICESP), por me ensinar sobre empatia, sobre enxergar além da doença, através de seu olhar atento às necessidades dos pacientes. Obrigada pelo apoio e conselhos sempre oportunos.
Ao Prof. Dr. Nathaniel Simon Treister (Harvard School of Dental Medicine), pela colaboração na redação deste estudo, contribuindo com a visão singular de quem possui vasto conhecimento e experiência no manejo de pacientes oncológicos.
Igualmente, ao Prof. Dr. César Rivera (Universidad De Talca) e à psicóloga Juliana Ono Tonaki (ICESP), pelas preciosas e oportunas contribuições na elaboração deste trabalho.
Aos amigos que a pós-graduação me proporcionou, em especial à Natália Palmier, Elisa Kauark e Letícia Oliveira. Vocês são profissionais incríveis com quem tenho o privilégio de aprender diariamente.
O presente trabalho foi realizado com apoio da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – Brasil (CAPES) – Código de Financiamento 001.
AGRADECIMENTOS ESPECIAIS
Aos meus pais, Paulo Gomes Alves e Maria Simone Guimarães Bonfim Alves, por todo incentivo e dedicação à minha educação, doando-se incondicionalmente por acreditarem em mim e nos meus sonhos. Minha eterna gratidão pelo imenso amor e zelo com que me cercam.
À minha irmã Camila Guimarães Bonfim Alves, por seu amor e carinho sempre presentes, mesmo à distância. Obrigada por cada palavra de ânimo e encorajamento. Eu amo você.
À minha tia Vilma Gomes Alves (in memoriam), por ter sido minha família quando cheguei a São Paulo. Embora nosso reencontro tenha sido abreviado, agradeço por todo carinho com que me recebeu. Sempre levarei a lembrança do seu abraço.
Ao meu amor e melhor amigo, Ricardo dos Santos Rodrigues, por caminhar ao meu lado neste projeto, apoiando-me e incentivando a seguir em frente. Obrigada por me presentear com uma incrível nova família em Ribeirão Pires-SP, cujo amparo e cuidado posso sempre contar. Meus dias longe de casa são mais felizes com você.
RESUMO
Os cânceres em boca ou em orofaringe representam os tipos mais comuns de câncer na região de cabeça e pescoço. Apesar dos diversos avanços em sua terapia, pouca ênfase tem sido dada aos aspectos relacionais no cuidado dos pacientes propriamente ditos. Nesse contexto, as percepções dos pacientes sobre a forma como são comunicados de um diagnóstico oncológico podem gerar repercussões clínicas e psicoemocionais significativas. Portanto, esta revisão narrativa teve por objetivo acessar a literatura científica disponível acerca dos principais aspectos envolvidos na revelação de um diagnóstico oncológico, com enfoque no câncer de boca e orofaringe, apresentando protocolos validados para este fim. Foi realizada uma busca nas bases de dados MEDLINE, Embase e Scopus incluindo estudos publicados em língua inglesa ou espanhola até Outubro de 2019, que exploraram a temática da comunicação de más notícias em saúde, revelação da verdade e treinamento de habilidades de comunicação no contexto oncológico, especialmente do câncer de boca e orofaringe. Observou-se que há uma lacuna na formação dos profissionais de saúde quanto ao desenvolvimento de habilidades de comunicação para entrega de más notícias e que protocolos de comunicação podem ser ferramentas úteis para guiá-los nesta difícil tarefa da prática clínica. Abordagens que estimulem avaliação das demandas de informação dos pacientes, equilíbrio da transmissão das notícias, manejo dos aspectos emocionais e envolvimento do paciente no plano de cuidado apresentam melhores desfechos. O impacto de um diagnóstico oncológico permeia particularidades de cada indivíduo, como a personalidade, sistema de valores, expectativas e objetivos de vida. Aspectos clínicos e socioculturais podem modular a atitude dos pacientes frente à doença e seu tratamento, no entanto, mais estudos desta natureza no contexto do câncer oral se fazem necessários. Conclui-se, portanto, que os profissionais devem se amparar em métodos validados de entrega de informação e suporte para pacientes ao comunicar um diagnóstico oncológico, adotando uma abordagem centrada em suas necessidades.
Palavras-chaves: câncer oral; revelação da verdade; comunicação de más notícias; comunicação em saúde.
ABSTRACT
Oral and oropharyngeal cancer are the most common cancers in the head and neck region. Despite the advances in the treatment, the relational aspects of care have received little attention. Patients‘ perceptions of how they are informed of a cancer diagnosis may have important clinical and psycho-emotional implications. This narrative review aimed to access the available scientific literature about the main aspects of the revelation of an oncologic diagnosis, focusing on oral and oropharyngeal cancer, presenting validated protocols for this purpose. A literature search was conducted in the MEDLINE, Embase and Scopus databases including studies published in English or Spanish through October 2019, which explored the topics communicating bad health news, truth disclosure and communication skills training in the oncological context, particularly about oral and oropharyngeal cancer. It has been noted that there is a gap in health professionals' training in communication skills development to deliver bad news. Communication protocols can be useful tools to guide them in this difficult task of clinical practice. Approaches that stimulate assessment of patients‘ information demands, balance in the news transmission, management of emotional aspects, and patient involvement in the care plan, present better outcomes. The impact of a cancer diagnosis pervades individual‘s particularities, such as personality, value system, expectations, and life goals. Clinical and socio-cultural aspects may modulate patients‘ attitudes towards the disease and its treatment. Further studies of this nature in the context of oral cancer are necessary. It is therefore concluded that the professionals should rely on validated methods of information delivery and patient support when communicating a cancer diagnosis, adopting an approach focused on their needs.
SUMÁRIO
1 INTRODUÇÃO 12
2 ARTIGO: Strategies for communicating oral and oropharyngeal cancer
diagnosis: why talk about it? 15
3 CONCLUSÃO 43
REFERÊNCIAS 44
ANEXOS
Anexo 1 - Comprovante de aceite do artigo 47
Anexo 2 - Licenças para reprodução de tabelas 48
1 INTRODUÇÃO
O câncer de boca é um dos tumores malignos mais comuns na região de cabeça e pescoço, tendo como subtipo patológico mais prevalente o carcinoma espinocelular (CEC), que corresponde a aproximadamente 90% de todas as neoplasias malignas em boca.1,2 Anualmente, estima-se que mais de 350.000 novos casos desta natureza de sejam diagnosticados no mundo.3 O Brasil está entre os países com maior incidência e mortalidade por CEC de boca e orofaringe no cenário internacional, com uma estimativa de 14.700 novos casos em 2019, alcançando a 5ª posição entre os cânceres mais prevalentes em homens segundo o Instituto Nacional de Câncer.4
Avanços expressivos no tratamento deste tipo de câncer foram alcançados nas últimas décadas, no entanto, seu prognóstico mantém-se pouco favorável, especialmente em casos tardiamente diagnosticados, apresentando sobrevida média de 50% em cinco anos.5 Tendo em vista sua alta prevalência e morbimortalidade, o termo ―câncer‖ ainda carrega uma representação simbólica de sofrimento e sentença de morte para grande parte da população.6 Portanto, receber um diagnóstico oncológico constitui-se de um evento significativo na trajetória de vida de um indivíduo que pode afetar negativamente sua percepção quanto ao futuro. O impacto desta notícia costuma ser proporcional à lacuna entre as expectativas do paciente e a realidade de sua condição.7 Embora não possam ser generalizadas, as reações ante este tipo de revelação diagnóstica frequentemente envolvem sentimentos de medo, tristeza, negação e raiva.8
A maneira como más notícias são comunicadas aos pacientes, nesse contexto, pode produzir efeitos tão significativos quanto o conteúdo da mensagem em si.7 O tipo de abordagem pode influenciar na assimilação de informações pelo paciente, na adaptação às más notícias, nos níveis de sofrimento, ansiedade e depressão, e em decisões acerca do tratamento.9-11 Evidências científicas apontam que comunicações eficazes estão associadas a desfechos prognósticos mais favoráveis em saúde.11 Uma revisão com 127 estudos sobre comunicação revelou, após metanálise, um risco 19% maior de não-adesão terapêutica entre pacientes cujas comunicações com o profissional se deram de modo inadequado, enquanto a adesão ao tratamento foi 1,62 vezes maior entre pacientes cujos profissionais receberam treinamento em habilidades de comunicação em saúde.12 O estilo de comunicação empático e escuta ativa dos oncologistas foi positivamente associado à satisfação dos pacientes, ao menor sofrimento emocional e à maior percepção da capacidade de lidar com a doença e seu tratamento por parte dos doentes.13 Os caminhos pelos quais a comunicação médico-paciente pode resultar em melhores desfechos em saúde incluem maior conhecimento e
empoderamento dos pacientes, compartilhamento de decisões terapêuticas, maior apoio social e melhor gerenciamento das emoções.14
Ainda que competências interpessoais sejam importantes para estabelecer a relação profissional-paciente, elas não substituem fortes habilidades de comunicação em saúde. Conversas desafiadoras para a revelação do diagnóstico oncológico são, em muitos aspectos, semelhantes a procedimentos ou intervenções cirúrgicas complexas, pois requerem planejamento e execução cuidadosos, usando estratégias bem desenvolvidas para facilitar a comunicação ideal.15 Programas de treinamento são eficazes no aprimoramento de habilidades de apoio, tornando os profissionais mais propensos a demonstrar empatia, individualizar suas respostas segundo as emoções do paciente e oferecer suporte.16 Embora comunicar más notícias seja uma inevitável e fundamental tarefa intrínseca à prática clínica, poucos profissionais de saúde receberam algum treinamento específico. Em virtude desta deficiente formação, variados protocolos foram desenvolvidos a fim de orientar e facilitar tais comunicações, especialmente no âmbito oncológico. Dentre estes, o protocolo SPIKES destaca-se pela abrangência de suas recomendações, as quais foram incorporadas a diretrizes de guidelines em diversos países na América, Europa e Ásia.17-19
As percepções dos pacientes sobre as práticas empregadas durante a revelação de diagnósticos oncológicos podem ser influenciadas por fatores pessoais, sociodemográficos e conceitos culturalmente construídos, como o princípio da autonomia do paciente e o papel da família. Essas particularidades podem nortear a forma, o tipo, a quantidade de informação a ser fornecida, e até mesmo o tipo de suporte emocional ofertado.20 Estudos sobre comunicação centrada no paciente sugerem que as abordagens são mais eficazes quando os profissionais de saúde avaliam as opiniões dos pacientes sobre as informações disponibilizadas.14,21 Há uma relação diretamente proporcional entre o provimento adequado de informação e a redução dos níveis de ansiedade e depressão dos pacientes. A redução desses índices aumenta a satisfação dos pacientes com o cuidado e com as informações recebidas.22,23
Um crescente corpo de estudos tem descrito experiências de revelação diagnóstica de diversos tipos de câncer sob perspectiva dos pacientes e suas preferências de comunicação. Explorar as repercussões de cada estilo de abordagem permite apontar fatores preditivos que embasam modelos de comunicação centrados nas necessidades dos pacientes.18,24 No entanto, pesquisas que caracterizam as experiências de comunicação do diagnóstico de câncer de boca e orofaringe são categoricamente escassos, especialmente aqueles que abordam as preferências e as experiências vividas pelos pacientes.25-27 Deste modo, a presente revisão
estruturada se propôs a analisar a literatura científica disponível acerca dos principais aspectos da revelação de um diagnóstico oncológico, com enfoque no câncer de boca e orofaringe, apresentando protocolos validados para este fim.
2 STRATEGIES FOR COMMUNICATING ORAL AND OROPHARYNGEAL CANCER DIAGNOSIS: WHY TALK ABOUT IT?
Artigo aceito para publicação na sessão Oral Medicine do periódico Oral Surgery, Oral
Medicine, Oral Pathology and Oral Radiology Journal (Anexo 1)
Authors: Carolina Guimarães Bonfim Alvesa, Nathaniel Simon Treisterb, Ana Carolina Prado Ribeiroa,c, Thaís Bianca Brandãoc, Juliana Ono Tonakid, Marcio Ajudarte Lopesa, César Riverae, Alan Roger Santos-Silvaa
Affiliation: [a] Oral Diagnosis Department, Semiology Area, Piracicaba Dental School, University of Campinas (UNICAMP), Piracicaba, São Paulo, Brazil.
[b] Division of Oral Medicine and Dentistry, Brigham and Women‘s Hospital, Boston, Massachusetts; Department of Oral Medicine, Infection and Immunity, Harvard School of Dental Medicine, Boston, USA.
[c] Dental Oncology Service, Instituto do Câncer do Estado de São Paulo (ICESP), Faculdade de Medicina da Universidade de São Paulo, São Paulo, Brazil.
[d] Psychology Service, Instituto do Câncer do Estado de São Paulo (ICESP), Faculdade de Medicina da Universidade de São Paulo, São Paulo, Brazil.
[e] Oral Medicine and Pathology Research Group, Faculty of Health Sciences, University of Talca (UTALCA), Talca, Maule Region, Chile.
Corresponding Author
Alan Roger Santos-Silva
Department of Oral Diagnosis, Piracicaba Dental School − University of Campinas. Av. Limeira, 901, Areão, Piracicaba, São Paulo - SP, Brazil, CEP: 13414-903.
ABSTRACT
Introduction: An oral cancer diagnosis disclosure is a significant life-changing event which
may have meaningful psycho-emotional consequences. Although that task is essential to clinical practice, few professionals receive training for the communication of bad news. Objectives: This review aimed to explore the paradigms of disclosing a cancer diagnosis with
a focus on oral and oropharyngeal cancer and patient-related considerations. Study Design: A search of MEDLINE, Embase and Scopus was conducted using keywords: oral cancer; mouth lesions; oncology; breaking bad news; truth disclosure; and communication skills training. English and Spanish language studies published through October 2019 were included. Results: The way bad news is conveyed to cancer patients may affect their comprehension of
information, emotional distress, treatment adherence and health outcomes. The models of communication focused on patients‘ preferences may result in better treatment outcomes. Available protocols, such as SPIKES and ABCDE, have useful recommendations for health professionals communicating an oral cancer diagnosis. However, they must be attentive to the particular information needs of patients. Conclusions:By communicating a cancer diagnosis, providers should employ validated methods of information delivery and support for oncological patients. Further studies are needed to evaluate the experiences and preferences of oral cancer patients during these communications.
INTRODUCTION
Oral cancer is one of the most common types of head and neck cancers and encompasses a wide variety of malignant tumor types, such as squamous cell carcinomas, malignant minor salivary gland tumors, lymphomas, sarcomas, melanomas, odontogenic carcinomas, and metastatic diseases, among others.1
Oral and oropharyngeal squamous cell carcinoma are one of the most common types of head and neck cancers.1 In 2018, the Global Cancer Observatory estimated approximately 354,000 new cases of lip and oral cavity cancers and more than 177,000 deaths from this illness around the world.2 An oncological diagnosis, such as oral cancer, represents a significant life-changing event, since in addition to potentially life-threatening implications, its treatment is associated with physical, functional, emotional, and psychosocial impairments of the individual, which can have a tremendous impact on the quality of life.3–5
The announcement of a cancer diagnosis can be a stressful and challenging moment for patients and professionals.6,7 Breaking bad news is an essential and complex task of clinical practice that requires both verbal and nonverbal communication skills.8,9 The way bad news is conveyed to cancer patients is as important as the contents of the message itself, and if executed inadequately, can result in negative consequences for the patients.10 This narrative review aimed to explore the main aspects of disclosing a cancer diagnosis, focusing on oral and oropharyngeal cancer, and to present current protocols available for this purpose.
STUDY DESIGN
The authors conducted a search of MEDLINE, Embase and Scopus using the keywords: oral cancer; mouth lesions; oncology; breaking bad news; truth disclosure; and communication skills training. English and Spanish language studies published through
October 2019 were included. The findings are divided into six thematic sections discussing the impact of oral and oropharyngeal cancer diagnosis disclosure, the patient-centered communication concept, training of communication skills, available breaking bad news protocols and cancer patient-related considerations.
RESULTS AND DISCUSSION
Breaking bad news for oral cancer patients
In the context of medical care, ―bad news‖ could be defined as any information that produces a negative alteration to a person‘s expectations about their present and future.10
The situations in which health providers may have to break bad news are numerous. In oncology, this kind of information is even more frequent, and might be a life-threatening diagnosis, an unsatisfactory response to treatment, a dismal prognosis, relapse, or new lesions.7,9 What constitutes bad news has an element of subjective judgment. How bad, sad, or difficult information is received by patients depends on many factors including personality, cultural context, a value system, previous experiences, expectations, and life goals.7 The impact of bad news is generally proportional to the gap between patients‘ expectations and perceptions of their condition and their real state of health. For example, a patient who is told that her mouth ulcer is caused by oral squamous cell carcinoma when she was expecting to be told it was a reaction to a new dental prosthesis is likely to feel shocked.
The reactions and emotions expressed by patients at the time when an oral cancer diagnosis is revealed, like any cancer diagnosis, are diverse and may invariably include shock, fear, grief, denial, and uncertainty, as well as concerns for changes in interpersonal relationships and financial constraints.11–13 Even during the diagnostic process, patients suspected of having oral cancer express negative feelings, such as concern, nervousness,
sadness, and anger. Patients with a confirmed oral cancer diagnosis were found to have higher levels of anxiety and depression symptoms compared to patients who were suspected of having malignant lesions, but were not diagnosed with cancer.14
Following an oral cancer diagnosis, patients are confronted with challenging lifestyle changes. Several vital functions may be adversely affected according to location of the tumors, such as eating, breathing, and communication, namely speech, as well as body image and appearance.13 These changes greatly impair everyday physical functions and result in profound psychosocial consequences, as interpersonal communication—social interactions and emotional expressions—is linked with the structural and functional integrity of the face, head, and neck.4,5 Consequently, a high prevalence of anxiety, depression, and emotional distress has been reported in patients with head and neck cancer,15,16 including post-traumatic stress disorder symptoms in newly diagnosed patients.17
The manner in which doctors communicate bad news to patients has a strong therapeutic dimension.18 An increasing number of studies indicate that the high quality of patient−clinician communication influences the way cancer patients deal with their illness and may have an influence on health outcomes. Specifically, the way bad news is discussed affects the patient‘s comprehension of information,19,20
their emotional distress,21,22 the patient‘s adjustment process,23
their satisfaction with medical care,23–25 their trust in the clinician,25,26 treatment adherence,27,28 and health outcomes.29,30
Patient-centered communication
The key concepts of patient-centered communication are: i) eliciting and understanding patient perspectives; ii) understanding the patient within their psychosocial/cultural contexts; and iii) reaching a shared understanding of the patient‘s problems and therapies that are concordant with the patient‘s values.31 This approach involves
allowing patients and their family/caregivers to make informed healthcare decisions that are based on the evidence and consistent with their needs, preferences, values, and directing them to the necessary care.32 Patient-centered communication is achieved when health professionals adapt their communication style to the patient‘s way of reasoning, understanding, feeling, and behaving.33,34 The patient‘s perspective about what is important during the disclosure of the diagnosis may differ from the perspectives of those who are accustomed to this disease, therefore professionals must attempt to meet the information needs of individual patients.33–35 Apart from being an indicator of quality healthcare, patient-centered communication contributes directly and indirectly to improved clinical outcomes and the health-related quality of life of people with cancer.24,36,37
Patient-centered communication skills are essential to the delivery of person-centered care, which aims to provide care that respects and responds to the singularity of each patient, allowing them to make choices in their care that best fit their individual circumstances.38 This type of communication has a positive influence on the attitude of cancer patients towards the illness and the standard of care delivered. Zachariae et al. reported that the attentive and empathic communication style of physicians was associated with greater patient satisfaction, increased self-efficacy related to the capacity to cope with the disease and its treatment, and reduced emotional distress following the consultation of patients attending an oncology outpatient clinic.23 Giving clear and truthful information at every step of the diagnostic process for oral cancer was also related to high rates of patient satisfaction with the care received.14
The main functions of patient−clinician communication are fostering healing relationships, exchanging information, responding to patients‘ emotions, managing uncertainty, making informed decisions, and enabling patient self-management.32,38 The relational aspects of communication and emotional support provided by health professionals
are every bit as important as the surgical management, according to testimonies of oral cancer patients in a study about the dimensions of person-centered care in dentistry.25 They repeatedly highlighted the importance of being treated as a person, not just another ‗cancer patient‘. Their high regard for the care team and positive perceptions about their treatment, even in the face of various postoperative complications, was directly related to the compassion, empathy, and person-centered care experienced.25
Communication skills training
Effective communication is central to the clinical practice of professionals working in cancer care and an essential skill in the patient−clinician encounter. Although good interpersonal skills are important in this process, they are not a substitute for strong healthcare communication skills.11 However, the theoretical basis for health professionals receiving communication skills training has historically been weak. During their academic training, most professionals receive little or no specific education for announcing bad news, often having limited experience with observing the performance of other professionals in these circumstances.6,10 Such education is even rarer in dentistry.39 There is widespread confidence that dental students can communicate familiar topics to patients, such as periodontal disease, dental caries (cavities), and bad news about the extraction of a tooth due to a failed restoration. However, the confidence is lower when it comes to the challenge of communicating information involving human papillomavirus (HPV) infection, oral cancer, and systemic disease.40 There are rare references to the inclusion of specific training in a dental school curriculum for breaking bad news, although dental professionals are essential and play a relevant role in the screening, diagnosis, and follow-up of patients with oral cancer.40–42
Training in communication skills has been shown to develop sustainable improvement in both objective and subjective outcomes in a number of clinical situations.43 As an immediate outcome of the teaching patient-centered communication, there has been an improved behavior of healthcare professionals during the patient encounter.38 Over recent years, there has been a marked increase in the number of courses aimed at improving healthcare professionals‘ communication skills, especially in oncology. Several studies have shown that, through these training programs, professionals and students have improved their ability to use open questions, show empathy, offer emotional support towards their patients, elicit concerns, and to explore and validate whole-person issues.44–47 Consequently, this behavior often leads to an increased patient knowledge, self-efficacy, treatment adherence, self-care and better-informed decision making, which may result in improved treatment outcomes, quality of life and well-being, aside from reducing care disparities and costs.38 However, there is still insufficient evidence to support the beneficial effects of training programs on the satisfaction of cancer patients and healthcare professional ‗burnout‘.48
It has been recognized that deficiencies in communication skills contribute to high psychological morbidity, emotional burnout, depersonalization, and low personal accomplishment in healthcare professionals.44
Protocols for delivering bad news
Healthcare professionals need to be able to handle difficult situations that may arise when delivering an oncological diagnosis. They must be able to manage the emotional reactions of patients, the administration of expectations engendered by prognosis and treatment, and patients‘ involvement in decision-making, in addition to finding the right balance between being honest yet encouraging, hopeful, and supportive.9,10 This kind of
challenging conversation requires careful planning and execution, using well-developed strategies to facilitate optimal communication.
The task of disclosing a cancer diagnosis can be improved by understanding the process involved and approaching it as a stepwise procedure by applying well-established principles of communication and counseling.6 In this scenario, many protocols have been developed to guide health professionals‘ conduct during the communication of bad news, especially with oncologic patients and family. Newton and Fiske showed one of the first guidelines directed at dental professionals for communicating bad news.49 The authors outlined three important components to breaking bad news based on medical literature: preparation; discussing the situation; and reviewing the situation. Within each of these stages, specific and practical recommendations were given (Table I).
There are two main protocols for breaking bad news, especially in the context of cancer, that are particularly well suited to be adapted to patients with oral cancer 39,41. The ABCDE protocol50 highlights the following as essential steps for communicating with oncologic patients: prepare in advance for the meeting; construct a relationship and therapeutic environment; adequately communicate; manage the reactions of the patient and the family; and encourage and validate emotions51 (Table II).
The SPIKES protocol,6 developed by a group of American and Canadian medical oncologists, provides methods and strategies for disclosing a cancer diagnosis that constructively respond to what happens during the revelation of bad news, according to patients‘ reactions (Table III). Its recommendations have been found to positively affect patient outcomes47,52,53 and have been used as a major reference for patient−clinician communication guidelines in the United States, Chile, Germany, Brazil, and a number of other countries.8,54–56 The SPIKES proposal involves gathering information from the patients, which helps to identify their knowledge and perceptions about their condition and the
expectations and their willingness to receive bad news.56 Therefore, it seeks to provide a clear and comprehensible message in accordance with patients‘ needs and wishes. Not every episode of breaking bad news requires all steps of the SPIKES protocol, but when it is performed, the sequence must be followed.57 Through specific skills, the SPIKES protocol aims to reduce the emotional impact and isolation experienced by patients upon receiving bad news, with the ultimate goal of cooperatively establishing a treatment strategy with them.56,57
All of the protocols for breaking bad news incorporate common elements about the patient−clinician encounter, including the evaluation of the patients‘ attitudes, wishes, needs, and characteristics for the purpose of adjusting the delivery—announcing the bad news honestly but not taking away hope, dealing with the emotional aspects surrounding the process, and involving the patient and the family in the decision-making. These points are reaffirmed by a recent consensus of the American Society of Clinical Oncology (ASCO) about patient−clinician communication, where an expert panel convened to develop clinical practice guidelines and recommendations—based on a systematic review of the medical literature published over the past ten years—and a formal consensus process.11 This guidance is directed at clinicians who care for adults with cancer and presents some strong recommendations regarding communication skills and discussion strategies for treatment and prognosis (Table IV).
Five key communication tasks are essential for disclosing an oral cancer diagnosis. These involve the diagnostic process (including screening for cancer and communicating risk), communicating the diagnosis confirmation; providing information about treatment; communicating after treatment; dealing with the fear of recurrence; and discussing the end of life.58 Adequate preparation to break bad news should make it easier to discuss the information with patients, decide what content to include in the discussion, and the way in which the information should be addressed. These tasks are rarely obtained in a single visit,
therefore special emphasis should be given to conduct preceding diagnosis confirmation interviews because it allows providers comprehension of the patients‘ mood and knowledge about their condition, which may help guide subsequent visits.57
Communication processes must start from the first appointment with the establishment of a good physician−patient relationship.57
Some providers appear to be reticent to inform patients that they are screening for oral cancer.59 Patients at high risk need to be encouraged to change their risk behaviors and be cautioned about the necessity to maintain vigilance. For each screening procedure or biopsy indication, a careful explanation of the purpose and possible outcomes should be provided. Understanding the concept of risk can be hard for some patients and the use of oral cancer brochures may facilitate the discussion; however, evidence suggests that personalized communications are more effective in promoting uptake than generalized approaches.58,59
Effective communication of bad news must incorporate not only the medical information, such as prognosis and treatment, but also discussion of the patients‘ emotional and social well-being, tailored to their ability to understand and their cultural background.49,58 At the moment the diagnosis is announced, it is important to focus on stating the bad news and dealing with the initial emotional response. In many cases, patients may not recall or understand the information given to them in the face of receiving the upsetting news, particularly if the patients are too stunned to register any further information.58 Some patients reported that they felt incapable of making any decisions when the bad news was initially disclosed and wished to have a second discussion, preferably accompanied with a relative or loved one.54 Therefore, it has been recommended to offer written or visual materials that support the message and to arrange a follow-up meeting.58
Although there are guidelines for communicating difficult news to patients, it is at the health professionals‘ discretion to determine the appropriate type and amount of information
to impart to patients, based on the professionals‘ perception and sensibility during the meeting,35 as the protocols are a strategy and not a script. While they provide broad methods to approaching the disclosure of bad news, the clinician must be prepared to constantly adapt to each patient‘s specific situation.57
Patients’ perspectives
Patients with cancer are often dissatisfied with the manner in which their cancer diagnosis is delivered.35 In general, satisfaction with patient−clinician communication is known to depend on different factors, including the communication skills and style of the clinician, the patient−clinician relationship, as well as biomedical and psychosocial factors.6,23
Regarding the perspectives of patients on their experience in having a diagnosis revealed to them, some studies have shown that patients wished to gain more clarity about the expected distress and progression of the disease, to have the opportunity to ask more questions, and for the health professionals to ensure that the patients have understood.22,54 Moreover, divergences between patients‘ preferences and the guidelines and recommendations have also been reported, suggesting that a guided communication process that is closer to the patients‘ wishes—through personalization of protocols—may be helpful.54,60
The magnitude of the impact during the oral and oropharyngeal cancer diagnosis disclosure may be more related to patients‘ personal values and professional support structure available to meet their emotional needs than the nature or stage of the diagnosis. Most cancer patients consider the consultation when they first received their diagnosis as the worst experience of bad news that they had to face in the course of the disease, regardless of the stage of the tumor.22 Nevertheless, it must be kept in mind that advanced cancer patients are repeatedly confronted with bad news, such as the presence of metastasis, recurrence, and an unfavorable prognosis. Apart from diagnosis-specific content, patients can also count
treatment-related information as bad news.7 Almost 30% of communication preferences of patients at advanced stages are unmet. This is not only due to a lack of specific information regarding the disease, but also to the psychosocial and personal aspects that are not sufficiently considered during the consultations.22 Therefore a good physician−patient communication from the very first meeting is indispensable. Awareness of the patients‘ perspective allows providers to be empathic in addressing patients‘ fears and their need for additional information.61 The available protocols for breaking bad news in oncology in fact lend more emphasis to patients‘ personal information needs and their psychosocial aspects than the nature of disease or its stage at diagnosis disclosure.
Cancer patient preferences and their experiences can vary considerably due to a number of factors, including cultural, ethnic, and other differences. For example, the preference for the presence of relatives when receiving the cancer diagnosis is more frequent in Asian patients than Western patients. In many East Asian countries, there is also less of a concern with discussing life expectancy at the moment of cancer disclosure.62 Communication practices can be influenced by culturally determined concepts of patient autonomy and the role of the family.63 Western culture requires that health professionals talk to patients before providing information to their family, and then only if the patient has consented to the disclosure, in accordance with the principle of the individual‘s autonomy. In contrast, in many non-Western countries, disclosing a cancer diagnosis directly to the patient is not the norm.64 In some countries, such as Japan and Tanzania, a family-centered model of medical decision-making is typically favored and the atomistic Western definition of patient autonomy is absent. However, in Arab countries, breaking bad news relies on a paternalistic approach based on Islamic principles.62–64
Demographic differences can also influence how cancer patients deal with diagnosis disclosure. With regard to gender, female patients place more importance on receiving
detailed information about their cancer and on having the clinicians provide support when being told the news.22,65 Patients with a more formal education tended to want more information from their physicians and also indicated that the context of how the news was conveyed was more important to them than it was for patients with less formal education.65 Younger patients also consistently expressed a greater interest in receiving as much detailed information as possible and in receiving emotional support.62 The acknowledgment of these cultural and demographic aspects can help professionals to assess what and how much information to provide and the kind of emotional support that should be offered.62
Oral cancer considerations
While preferences for disclosing information have been extensively studied in patients with other oncological diseases, analogous literature for oral and oropharyngeal cancer is lacking.60,66 One of the few papers to have evaluated the experience of patients receiving a head and neck cancer diagnosis showed most did not wish to have anyone else present while they received the diagnosis, and they did not want to be touched (hugged) by the health professional. They expected their clinicians to be truthful, caring, and compassionate, and use simple and direct terms without complex medical terminology.67 Although the results of this survey revealed interesting points, its small sample size of 16 participants does not allow any definitive conclusions to be drawn that support specific communication strategies for this type of cancer. There are no studies that have specifically addressed preferences of oral cancer patients related to the diagnosis disclosure.
On the other hand, currently there is a growing interest in understanding experiences and specific psychosocial needs of patients diagnosed with HPV-related oropharyngeal cancers (HPV-OPC).68–70 The incidence of HPV-OPC is rising in many developed countries, principally among a younger population, with a different set of risk factors and apparently
better prognosis for survival when compared to tobacco and alcohol-related oropharyngeal squamous cell carcinomas.68,71 While patients often focus on their cancer diagnosis rather than on HPV infection, sometimes expressing relief about the positive impact of HPV on the prognosis,12 disclosure that the cause is related to sexually transmitted illnesses may carry significant psychosocial consequences for patients and their partners, including stigma, confusion, feelings of shame, self-blame, relationship problems, and anxiety.72
At diagnosis, the main concerns for this population are related to treatment issues, such as cure and survival, HPV transmission to spouse and family, intimacy with a partner, how and why they became infected with HPV.70,73 Some studies highlighted that HPV-OPC patients have unaddressed questions and misinformation regarding HPV transmission.61,73 A recent study with 48 HPV-OPC patients showed that only 77% reported that their physicians told them that their tumor was HPV-positive, and only 52% thought that the main cause of their cancer was HPV. These knowledge gaps were more pronounced among older patients.70 Health providers dealing with patients with this type of cancer may not be familiar with counseling patients about the sexually transmitted nature of HPV, tending to address these issues less frequently.40,61 Other reasons may involve providers‘ time constraints, limited knowledge about HPV, presence of a companion or child during medical appointments, and patient or providers discomfort discussing HPV.61,70 However, it is becoming more recognized that patients should be informed that HPV is the cause of their cancer, and health professionals need to decide on the best time to discuss this with patients and their partners, with some patients‘ experiences suggesting the sooner the better.12,74
While patients rely on their health providers for information, they are commonly looking for more information than usually received from professionals.72 Almost 58% of HPV-OPC patients reported seeking information from sources other than their oncologist.72 Today, the Internet is a popular source of information, although a large number of patients
with HPV-OPC mentioned that material available does not generally apply to them and remarked that a cohesive, comprehensive, and trusted resource would be valuable.61 There is a need for content on HPV and head and neck cancer to be tailored for these patients. An informational pamphlet or handout with clear and consistent evidence-based health messages for patients and their partners seeking information could help alleviate anxiety, fear, and stigma relating to HPV and cancer.12,61 Since it is a recent theme, most data on psychosocial issues among HPV-related head and neck cancer patients has been limited to descriptive qualitative studies with small sample sizes, and additional studies are required to help to establish standards of care and communication for this unique emerging population.
CONCLUSIONS
An oral cancer diagnosis is a significant life-changing event that causes physical, functional, and psychosocial impairments. The way in which the diagnosis is delivered can have meaningful clinical and psycho-emotional consequences for patients. The task of breaking bad news is never simple, and it requires social and communicative competence, special management, and responsibility. Available protocols, some of which were developed specifically for cancer patients, can be valuable platforms from which to develop useful recommendations for health professionals communicating an oral cancer diagnosis. It is necessary, however, to pay special attention to the particular needs of patients, their expectations, cultural factors, and individual values to avoid stereotypical approaches. The models of communication focused on patients‘ preferences may result in better treatment outcomes. Further studies are needed to evaluate in more detail the experiences and preferences of oral cancer patients during these communications.
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Table I. The Sequence of Breaking Bad News.
Phases Recommendations
1. Preparation
The information to be given
The setting of the interaction
Time considerations
Have as much information on hand as possible
Provide the patients with written materials they can refer to later, which are easy to understand and support the message
Prepare a setting that promotes privacy and interaction with the patient, and assess the need for an escort or accompanying person
Allow sufficient time for giving information and exploring the patient‘s response
2. Discussing the news
Initiating the discussion
Exploring the patient‘s view of the bad news
Deciding on the steps going forward
Summarizing and closing
Find out what the patient already knows and what the patient wants to know
Give information in small chunks, using simple language, checking regularly to ascertain whether the content is understood, and respond to the patient‘s reactions
Explore the fears and fantasies that the patients have concerning the news they have been given
Work together with the patients to decide a plan of action, and identify the range and extent of their support networks
Bring together all essential information in a brief and coherent summary, and consider the possibility of providing some contact telephone numbers to the patient
An alternative approach to providing a point of contact is to consider training a member of your team in counseling skills 3. Reviewing the situation
Identify the impact of the bad news
Review how the consultation went
Acknowledge the impact that the bad news has had on you and your patient, and discuss it with someone
Reflect on what went well, and perhaps, what you might do differently should a similar situation arise again
Adapted by permission from Springer Nature: Newton JT, Fiske J. Breaking bad news: A guide for dental Healthcare professionals. Br Dent J. 1999;186(6):278-281.49
