Unrealistic expectations and disclosure of incurability in patients with non-small cell lung cancer.

PURPOSE: Determining whether patients' unrealistic expectations of chemotherapy as a cure were associated with their perception of the disclosure of incurability. METHODS: This prospective study included consecutive patients with pretreated non-small cell lung cancer from four study sites. Patients and their oncologists were asked whether they perceived the disclosure of cancer incurability. Patients were also asked if they thought that chemotherapy was curative. We followed up on whether the deceased patients received specialized palliative care 14 months after their last enrollment. Multiple regression analyses were conducted to examine the association between the expectation of chemotherapy as a cure and patient/oncologist-reported perceptions of the disclosure of incurability. RESULTS: We analyzed 200 patients, 77 (38.5%) of whom had unrealistic expectations of a cure. Based on patients' perceptions, incurability was disclosed to 138 (69.0%) patients, and based on their oncologists' perceptions, incurability was disclosed to 185 (92.5%) patients (patient/oncologist agreements, κ = 0.19). Patients without a perception of the oncologist's disclosure of incurability-regardless of their oncologist's perception-were more likely to have unrealistic expectations of a cure than patients for whom both patient and oncologist perceptions were present. Patients who had unrealistic expectations of chemotherapy as a cure were shown to be significantly less likely to have received specialized palliative care, after adjusting for covariates (adjusted OR, 0.45; 95% CI, 0.23-0.91; p = .027). CONCLUSION: Oncologists' disclosure of incurability was not fully recognized by patients, and expectations of chemotherapy as a cure were associated with patients' perception of the disclosure of incurability.

Telling the truth to patients before hip fracture surgery.

BACKGROUND: Hip fracture repair surgery carries a certain mortality risk, yet evidence suggests that orthopedic surgeons often refrain from discussing this issue with patients prior to surgery. AIM: This study aims to examine whether orthopedic surgeons raise the issue of one-year post-surgery mortality before hip fracture repair surgery and to explore factors influencing this decision. METHOD: The study employs a cross-sectional design, administering validated digital questionnaires to 150 orthopedic surgeons. RESULTS: A minority of orthopedic surgeons reported always informing patients about the risk of mortality in the year following hip fracture surgery. The main reasons for not discussing this risk were a desire to avoid frightening patients, time constraints, and concerns about undermining patient hope. Orthopedic surgeons reported a medium-high level of perceived self-efficacy, with higher self-efficacy associated with a reduced likelihood of discussing one-year mortality risk. Conversely, older age and holding a specialist status in orthopedic surgery were associated with an increased likelihood of discussing this risk with patients. CONCLUSIONS: These findings suggest a need for interventions to address communication barriers and ensure consistent provision of essential information to patients undergoing hip fracture surgery. Additionally, they highlight the importance of considering individual factors such as self-efficacy, age, and expertise in designing strategies to improve patient-provider communication in orthopedic care settings. TRIAL REGISTRATION: The study doesn`t report the results of a health care intervention.

Teenage Development and Parental Authority: applying consensus recommendations to adolescent care.

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.

Study protocol OKRA: orientation compass for the preparing, delivering and following up on breaking bad news conversations in paediatric oncology.

INTRODUCTION: In paediatric oncology, 'breaking bad news'-BBN-like cancer diagnosis is perceived as particularly challenging. Enabling a trialogue between children with their relatives and health professionals requires profound communication skills. Lacking the skills, experience or adequate support tools might result in negative consequences for both paediatric oncologists as BBN transmitters and BBN receivers as children with cancer and their relatives.In contrast to oncology for adults, multiperspective studies that explore BBN experience and specific support needs are rare, especially in Germany. Systematically developed and practically piloted support instruments, which address the specific needs of paediatric oncology, are missing. OBJECTIVE: To systematically design and mature in practice an orientation compass for preparing, delivering and following up on BBN conversations in paediatric oncology-so-called Orientierungskompass zur Übermittlung schwerwiegender Nachrichten in der Kinderonkologie (OKRA). METHODS AND ANALYSIS: OKRA is based on a QUAL-quant mixed study design, comprising two phases. Four groups will contribute (1) experts through personal experience (representatives for children receiving BBN and their parents), (2) medical care providers and representatives of national medical societies, (3) ambulant psychosocial/psychological support providers and (4) researchers. In phase 1, multiperspective knowledge is generated through a participatory group Delphi that involves in-depth interviews, focus group discussions and questionnaires. This process culminates in formulating theses for a high-quality BBN process (output phase 1). In phase 2, based on the theses, a pilot orientation compass is designed. Through iterative cycles with the participatory action research method, this instrument will be piloted in three paediatric oncological settings and consequently optimised. ETHICS AND DISSEMINATION: OKRA was approved on 19 September 2023 by the ethics committee of the Medical Faculty of the University of Cologne (No. 23-1187). After project completion, the OKRA compass will be distributed to multidisciplinary paediatric oncology teams throughout Germany. TRIAL REGISTRATION NUMBER: DRKS00031691.

["Revealing in the gerund": secrecy and stigma in practices of care for children and adolescents living with HIV/Aids]. / "Revelando", no gerúndio: segredo e estigma nas práticas de cuidado às crianças e adolescentes vivendo com HIV/Aids.

This article analyzes practices of care and the HIV diagnosis disclosure process to children and adolescents living with HIV/AIDS. A case study was conducted in an outpatient clinic located in a public hospital in Rio de Janeiro through participant observation, semi-structured interviews with health professionals, and the consultation of documents produced by the professionals. The analysis, based on the sociology of Simmel and Goffman, points to the revelation of the diagnosis as a hallmark that accompanies all the care established with users and sheds light on issues such as secrecy, stigma and the possible understandings about the health condition established. As a result, institutionalized relationships contribute to a progressive contact with the condition of bearing a stigma and enable phases of a patient's life protected by information to exist.

O artigo analisa as práticas de cuidado e o processo de revelação do diagnóstico a crianças e adolescentes vivendo com HIV/Aids. Foi realizado um estudo de caso em um ambulatório localizado em um hospital público do Rio de Janeiro (RJ), através de observação participante, entrevistas semiestruturadas com profissionais de saúde e consulta a documentos produzidos pelos profissionais. A análise, baseada na sociologia de Simmel e Goffman, aponta a revelação do diagnóstico como uma marca que acompanha todo o cuidado estabelecido com os usuários e dá luz a questões como o segredo, o estigma e as possíveis compreensões acerca da condição de saúde estabelecidas. Com isso, as relações institucionalizadas contribuem para um progressivo contato com a condição de portador de um estigma e fazem existir fases de uma carreira de doente protegido pela informação.

When Bad News Comes Through the Portal: Strengthening Trust and Guiding Patients When They Receive Bad Results Before Their Clinicians.

Communication in oncology was challenging long before the emergence of the US 21st Century Cures Act. Before 2021, a growing body of evidence had demonstrated the benefits of patients' access to and review of the clinical notes in their charts (open notes); however, studies examining the benefits of immediate access to test results were scarce until the implementation of the Cures Act's Information Blocking Rule. Individuals grappling with cancer today now possess immediate access to their laboratory results, imaging scans, diagnostic tests, and progress notes as mandated by law. To many clinicians, the implementation of the Cures Act felt sudden and presented new challenges and concerns for oncologists surrounding patients' potential emotional reactions to medical notes or lack of control over the careful delivery of potentially life-changing information. Despite data that show most patients want immediate access to information in their records before it is communicated directly by a health care professional, surveys of oncologists showed trepidation. In this chapter, perspectives from a patient with cancer, an oncologist, and a cancer psychiatrist (in that order) are shared to illuminate the adjustments made in clinician-patient communication amid the era of nearly instantaneous results within the electronic health record.

Erratum: 'I am afraid the news is not good' - Breaking bad news in the time of COVID: Experiences from a field hospital.

No abstract available.

Breaking bad news: A mix methods study reporting the need for improving communication skills among doctors in Pakistan.

BACKGROUND: Effective skills and training for physicians are essential for communicating difficult or distressing information, also known as breaking bad news (BBN). This study aimed to assess both the capacity and the practices of clinicians in Pakistan regarding BBN. METHODS: A cross-sectional study was conducted involving 151 clinicians. Quantitative component used a structured questionnaire, while qualitative data were obtained through in-depth interviews with 13 medical educationists. The responses were analyzed using descriptive statistics and thematic analysis. RESULTS: While most clinicians acknowledged their responsibility of delivering difficult news, only a small percentage had received formal training in BBN. Areas for improvement include time and interruption management, rapport building, and understanding the patients' point of view. Prognosis and treatment options were not consistently discussed. Limited importance is given to BBN in medical education. DISCUSSION: Training in BBN will lead to improved patient and attendants' satisfaction, and empathetic support during difficult times.

Breaking bad news in oncology practice: experience and challenges of oncology health professionals in Ethiopia - an exploratory qualitative study.

OBJECTIVE: To explore the experience and challenges health professionals face during breaking bad news (BBN) to patients with cancer in the oncology centre of Black Lion Specialized Hospital (BLSH), Addis Ababa, Ethiopia 2019. DESIGN: An exploratory qualitative phenominological study using in-depth interviews was carried out in the only radiotherapy integrated oncology centre in Ethiopia during March 2019. Purposeful maximum variation sampling was used to select participants. OpenCode (V.4.02) assisted thematic analysis approach was employed to analyse the data. PARTICIPANTS: Eleven oncology health practitioners (oncologists, residents and nurses) working at the oncology centre were interviewed. Repeated interviews and analysis were done until theoretical saturation. RESULTS: All participants were cognisant of the positive outcome of proper and effective practice of BBN. However, they were practicing it empirically, no standardised protocols or guidelines were in place. Four dimensions of challenges were mentioned: (1) setup centric: unconducive environment, lack of protocols or guidelines, inaccessible treatment, and psychotherapy or counselling services; (2) health care centric, such as inadequate expertise, inadequate time due to patient load,treatment backlog, and referral system; (3) patients/family centric: poor medical literacy level, poor compliance, and family interference; and (4) sociocultural: wrong perception of families on BBN and treatment modalities, and opposition from religious leaders. CONCLUSION: BBN is challenging for professionals caring for patients in the oncology centre of BLSH. Hence, there is a critical need to improve practices. Change efforts may focus on the development of contextualised, content and context specific practice oriented training programmes and curriculum interventions. Raising awareness of the community and religious leaders regarding the nature and treatment of cancer may also be a helpful adjunct.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

How hereditary cancer risk disclosure to relatives is handled in practice - Patient perspectives from a Swedish cancer genetics clinic.

OBJECTIVES: Hereditary cancer risks can be effectively managed if at-risk relatives enroll in surveillance and preventive care. Family-mediated risk disclosure has internationally been shown to be incomplete, selective and leave over a third of eligible at-risk individuals without access to genetic counseling. We explored patients handling of cancer risk information in practice. METHODS: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses. RESULTS: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information. CONCLUSIONS: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives. PRACTICE IMPLICATIONS: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family's inheritance pattern explained.

How to HEEAL: A Patient and Peer-Centric Simulation Curriculum for Medical Error Disclosure.

Introduction: Medical errors are an unfortunate certainty with emotional and psychological consequences for patients and health care providers. No standardized medical curriculum on how to disclose medical errors to patients or peers exists. The novel HEEAL (honesty/empathy/education/apology-awareness/lessen chance for future errors) curriculum addresses this gap in medical education through a multimodality workshop. Methods: This 6-hour, two-part curriculum incorporated didactic and standardized patient (SP) simulation education with rapid cycle deliberate practice (RCDP). The morning focused on provider-patient error disclosure; the afternoon applied the same principles to provider-provider (peer) discussion. Summative simulations with SPs evaluated learners' skill baseline and improvement. Formative simulations run by expert simulation educators used RCDP to provide real-time feedback and opportunities for adjustment. Medical knowledge was measured through pre- and postintervention multiple-choice questions. Learners' confidence and attitude towards medical errors disclosure were surveyed pre- and postintervention with assistance of the Barriers to Error Disclosure Assessment tool, revised with the addition of several questions related to provider-provider disclosure. Results: Fourteen medical students participated in this pilot curriculum. Statistical significance was demonstrated in medical knowledge (p = .01), peer-disclosure skills (p = .001), and confidence in medical error disclosure (p < .001). Although there was improvement in patient-disclosure skills, this did not reach statistical significance (p = .05). Discussion: This curriculum addresses the need for designated training in medical error disclosure. Learners gained knowledge, skills, and confidence in medical error disclosure. We recommend this curriculum for medical students preparing for transition to residency.

A Moratorium on the Euphemism MAID.

It is essential for high-quality health care for providers to adhere to the principle of truth telling, speaking with clarity and honesty. The euphemism medical aid in dying, MAID, is being mainstreamed in the medical literature by proponents of physician-assisted suicide and euthanasia. This trend is deleterious because MAID's proponents do not consistently express the meaning and intent of the practice, and the phrase downplays the fact that a provider is participating in the act of death for a patient. The euphemism blurs the differences between providing high-quality palliative care and participating in the death of a patient prior to a natural death. Some believe the term MAID is used exclusively for assisted suicide in patients with a terminal diagnosis with less than 6 months to live, when in fact it is being used for both assisted suicide and euthanasia and for patients who have no terminal diagnosis with potentially years to live. We are calling up on our colleagues to cease the use of this and other euphemisms in this ethically controversial practice. We recommend standardized language that accurately denotes the context and process. Provider Assisted Death by Prescription (PAD-P) and Provider Assisted Death by Administration (PAD-A) are terms that most accurately describe the process, taking into account who is prescribing or administering a lethal substance and the outcome of the actions. Literature that addresses this practice should be described as ending life literature. The standardized language needs to be used on death certificates so we can most accurately assess the impact that provider-assisted death is having on society. Emphasizing truth telling in morally controversial practices will foster trust among health care providers and with patients.

Lessons in Truth-Telling From the Novels of Thomas Wolfe.

This essay describes the author's experience with learning about building trust with every patient and family interaction through literature.