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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Interdisciplinary Simulation Courses to Train Residents on Communication of Unexpected Complications from Perioperative Care: A Randomized Comparison of Within-Event (Microdebriefing) and Postscenario Debriefing.

INTRODUCTION: Training to disclose bad news in a pluridisciplinary format facilitates communication and improves learning. There are many different debriefing methods described in the literature. The aim of this study was to compare and evaluate the value of final debriefing and microdebriefing with interruptions of the scenario in a simulation program about communication in unexpected complications from perioperative care. METHODS: We conducted a prospective, randomized, single center study between October 2018 and July 2019 in a simulation center. Three scenarios were related to patient or family disclosure of complications which had occurred during gynecologic surgery by a dyad involving 2 residents (a gynecology and an anesthesia resident). All sessions involved 6 residents (3 gynecologist and 3 anesthesiologist). The main outcome measure was the immediate residents' self-assessment of the impact of the course on their medical practice immediately after the session. RESULTS: We performed 15 simulation sessions including 80 residents. Thirty-nine residents were included in final debriefing group and 41 in micro-debriefing group. There was no significant difference on the impact for medical practice between groups (9.3/10 in the micro-debriefing group versus 9.2 in the final debriefing group (p = 0.53)). The overall satisfaction was high in the 2 group (9.1/10 in the 2 groups). CONCLUSION: This study is the first one to compare two debriefing methods in case of breaking bad news simulation. No difference between the 2 techniques was found concerning the students' feelings and short and long-term improvement of their communication skills.

Difficulties experienced by dentists and orthodontists regarding ethical issues when announcing the diagnosis of a rare oral disease: a qualitative study in Marseille, France.

PURPOSE: It is traditionally considered that breaking bad news to patients does not represent a cause for concern for dental professionals. However, there are situations where they will be confronted with this task, as in the case of rare dental diseases. Little information is available regarding the feelings of healthcare professionals on this subject. There are no qualitative studies that explore how a diagnosis of oligodontia is announced to patients by dentists and orthodontists. The aim of our study is to explore the difficulties and ethical issues experienced by dental health professionals when they have to announce a diagnosis of oligodontia to a patient and their family. METHODS: This study relied on a qualitative research method using focus groups of dentists and orthodontists and a thematic analysis procedure. RESULTS: The difficulties experienced could be summarised within five topics: organisational difficulties, difficulties with the management of dental treatment and with the administrative management associated with this anomaly, difficulties with the content of the announcement, and relational difficulties. These could be grouped in two categories: practical difficulties and ethical difficulties. CONCLUSION: This survey allowed us to understand the difficulties encountered by dentists and orthodontists when announcing oligodontia. The participants felt uncomfortable with this task and were under stress. They reported difficulties in delivering the medical information and in adapting to the message. It is essential that dental professionals develop skills in medical communication.

The HIV Empowering Adults' Decisions to Share: UK/Uganda (HEADS-UP) Study-A Randomised Feasibility Trial of an HIV Disclosure Intervention for Young Adults with Perinatally Acquired HIV.

Young adults with perinatally acquired HIV (PAH) face numerous challenges, including antiretroviral therapy (ART) adherence, managing onward HIV transmission risks and maintaining wellbeing. Sharing one's HIV status with others (onward HIV disclosure) may assist with these challenges but this is difficult. We developed and tested the feasibility of an intervention to help HIV status sharing decision-making for young adults with PAH. The study used a randomised parallel group feasibility design with 18-25-year-olds in Uganda and 18-29 year-olds in the UK. Participants were randomly assigned to intervention or standard of care (SOC) condition. The intervention consisted of four sessions (3 group, 1 individual) with follow-up support, delivered in person in Uganda and remotely in the UK. Assessments were carried out at: Pre-intervention /baseline; Post-intervention (intervention group only); Six-month follow-up. 142 participants were recruited (94 Uganda, 48 UK; 89 female, 53 male). At six-month follow-up, 92/94 (98%) participants were retained in Uganda, 25/48 (52%) in the UK. Multivariate analysis of combined data from both countries, showed a non-significant effect of intervention condition on HIV disclosure cognitions and affect (p = 0.08) and HIV disclosure intention (p = 0.09). There was a significant intervention effect on well-being (p = 0.005). This study addressed important gaps in understanding acceptable and feasible ways of delivering HIV status sharing support for young people living with PAH across two very different settings. The intervention was acceptable in both countries and feasible in Uganda. In the UK, retention may have been affected by its remote delivery.Trial registration: ISRCTN Registry, ISRCTN31852047, Registered on 21 January 2019.

EMBRACE (Empowering Medical students' skills in BReaking bAd news with Compassion and Empathy) module improves the skills of undergraduate medical students in effectively breaking the bad news: a case-control study.

Effective communication skills are pivotal in health care, particularly when conveying distressing information to patients and their families. However, medical education still lacks the adoption of a universal model that can be incorporated into the curricula to train and assess students in effectively communicating with patients. This study aims to assess the impact of training undergraduate medical students to deliver bad news effectively using the Empowering Medical students' skills in BReaking bAd news with Compassion and Empathy (EMBRACE) module. This randomized case-control study involved medical students from the first, second, and third professional years (study group, n = 75; control group, n = 75). For the study group, the EMBRACE modules were distributed. Then, a 1-hour training session on effectively delivering bad news was followed by a multiple-choice question test and objective structured clinical examination with response, interpretation, and communication skills stations. Participants' feedback was obtained on a five-point Likert scale. There was a highly significant improvement in knowledge and skills among the study group compared to controls with a P value less than 0.0001. Of the participants, 98.76% perceived that the training equipped them with practical skills, and 98.77% felt that the facilitator had demonstrated the steps of delivering bad news clearly and effectively. Only 4.44% of participants were confident in effectively interacting with patients before the session, and an overwhelming 81.11% gained confidence in their communication skills after the training. With demonstrated significant improvement in knowledge and skills, this study supports the adoption of EMBRACE modules in undergraduate medical education, ultimately improving patient experiences, doctor-patient relationships, and health outcomes.NEW & NOTEWORTHY The Empowering Medical students' skills in BReaking bAd news with Compassion and Empathy (EMBRACE) module is noteworthy for its holistic approach to training medical students in the delicate art of delivering distressing news to patients. It not only incorporates the evidence-based setting, perception, invitation, knowledge, emotions, and strategy (SPIKES) method but also distinguishes itself by providing real-life conversation examples and self-assessment cases, which make the training highly relatable and practical for students to actively engage in their learning and personal development.