Breaking bad news: experiences, views and difficulties of pre-registration house officers

OBJECTIVES: To obtain information regarding the involvement of pre-registration house officers (PRHOs) in the discussions on bad news, and the competency and difficulties they perceive in clinical practice. DESIGN: Structured telephone interviews. PARTICIPANTS: 104 PRHOs. MAIN OUTCOME MEASURES: Information about frequency and quality of involvement of PRHOs in discussions on bad news with patients and relatives, perceived competency and difficulties related to this task as well as ethical views concerning the disclosure of bad news. RESULTS: 82 PRHOs (78.9%) had initiated the breaking of bad news to a patient at least once, whilst patients themselves had initiated discussions of bad news by asking the doctors questions (92.3%). Almost all (96.2%), indicated that they had broken bad news to relatives of a patient. The majority of the junior doctors participating in our study felt fairly or very confident (90.4%) to break bad news. 'Often' quoted difficulties for over a fifth of the sample included 'Thinking I was not the appropriate person to discuss the bad news', 'Having all the relevant information available', 'Dealing with emotions of patient/relative', 'Lack of privacy' and 'Patients/relatives do not speak English'. Although 99 PRHOs (95.2%) believed that patients should be informed about a serious life threatening illness, 30.8% of the participants stated that doctors need to judge whether or not to tell a patient bad news. Factors most frequently selected by the PRHOs from a given list of possible factors contributing to a gap between theory and practice included problems with the organization of clinics (73.1%), insufficient postgraduate training (63.5%) and lack of staff (54.8%). CONCLUSIONS: The results indicate that PRHOs are frequently involved in the breaking of bad news. Whilst no claims can be made for their,actual performance in practice, their perceptions of competency would indicate that the extensive and compulsory undergraduate teaching they had received on this subject has served to prepare them for this difficult task. Organizational and structural aspects need to be taken into account as factors assisting or undermining doctors in their efforts to put into practice ethically sound and skilled communication when disclosing bad news.     

Truth disclosure on prognosis: Is it ethical not to communicate personalised risk of death?

Predicting risk of death based on personalised and objective clinical indicators is an improvement over intuition and clinical judgement. Risk assessment can benefit clinicians by improving prognostic certainty, and truth disclosure helps patients and families by preventing futile management. Some argue that consent should be obtained before a patient is given an estimate of their prognosis as disclosure of bad news can overburden patients. In this article, we argue that it is unethical not to use existing person‐specific information to guide diagnosis and shared decision making on management in partnership with well‐informed patients. Disclosure of a poor prognosis should be normalised in personalised medicine, performed incrementally and with sensitivity so that it is acceptable to patients, and only occur if patients want to know it. However, a requirement of consent for truth disclosure should not be mandatory. Despite some level of imprecision, personalised risk estimations can be used to tailor management to the patient's informed wishes and ensure that healthcare providers and families are acting ethically in the patient's best interest.     

Ethical issues in palliative care

OBJECTIVES: To review important issues that address respect for patient autonomy, beneficnce, non-maleficence, and justice, which are included in communication surrounding the determination of decision-making capacity, informed consent, breaking bad news, and creating shared goals of care. DATA SOURCES: Review articles, and government and organizational reports. CONCLUSION: Palliative care and its proximity to end-of-life care issues frequently raises ethical issues for patients, their families, and the clinicians caring for them. Supporting the identification and honoring the patient's preferences for treatment are central components of ethical behavior. IMPLICATIONS FOR NURSING PRACTICE: Advance care planning provides an important opportunity for respecting patient autonomy and may be helpful when discussing care options surrounding resuscitation, withholding or withdrawal of treatment, or the determination of medical futility.     

'Breaking bad news' within a paediatric setting: an evaluation report of a collaborative education workshop to support health professionals

AIMS OF PROJECT: To evaluate a workshop to prepare health professionals for breaking bad news in the paediatric setting. BACKGROUND: Breaking bad news can be difficult for health professionals, and it seems that few receive specific training for undertaking this challenging task. Latterly, however, there have been reports of training programmes being developed to prepare health professionals for breaking bad news, although most focus upon meeting needs of medical staff only. While doctors have a uniquely important role in breaking bad news it is evident that other health professionals, most frequently nurses, can be equally involved in this encounter. Accordingly, nurses and other professionals need training to recognize the contribution that they can make in ensuring sensitive and effective bad news disclosure. DESIGN: A one-day, multi-professional, experiential training workshop. METHOD: Forty-five participants, mainly nurses (34, 76%) and doctors (10, 22%), attended one of five breaking bad news workshops set up for staff working in a range of paediatric settings including Accident and Emergency and Intensive Care. Each of the workshops was facilitated by three facilitators from varied backgrounds. Using an experiential design, participants were supported to explore and reflect upon breaking bad news issues, which also included engagement with actors to act out realistic bad news scenarios. Debriefing, using a positive learner-centred model of feedback, provided the main platform for promoting learning. Following the workshop, participants completed an evaluation questionnaire, seeking their perceptions of the effectiveness of the workshop in enhancing knowledge and communication skills. DATA ANALYSIS: Atlas.ti, a qualitative computer data analysis software program was used to explore the evaluation comments made by participants, resulting in the generation of common themes. FINDINGS: Seven themes, including development of practice, the value of sharing, benefit of feedback, and team work, emerged from responses. All responses indicated that the workshop had been beneficial and an effective training method, with most participants (40 of 89%) indicating that they would strongly recommend their colleagues to attend a similar workshop. CONCLUSION: The educational approach reported is considered by participants to be beneficial in preparing health professionals for breaking bad news in a collaborative way.     

Informed consent for case reports: the ethical dilemma of right to privacy versus pedagogical freedom

A new international standard of editorial policy calls for written informed consent by the subject of every case report. Although this appears to be ethically appealing, the authors posit that in some situations, requesting informed consent may be unethical, can harm patients, and may erode the use of case reports as a valuable teaching method in psychiatry and psychotherapy. The authors discuss concerns regarding this new policy for mental health publication based on issues of transference, countertransference, best interest of the patient, and practicality.     

Ethics Is an Essential Dimension of First-Trimester Risk Assessment for Trisomy 21

We identify the clinical implications of the ethics of informed consent for risk assessment for trisomy 21. Based on the ethics of informed consent, we argue that routinely offering first-trimester risk assessment in centers qualified to provide it is ethically obligatory. We describe how pregnant women can be expected to respond to this offer. We then argue that routinely withholding the results of first-trimester risk assessment is ethically unjustified. The ethics of informed consent is an essential dimension of first-trimester risk assessment for trisomy 21.     

Research in emergency situations: with or without relatives consent

Patients in emergency situations with impaired consciousness are unable to give informed consent to participate in clinical trials. In this situation, some ethics committees ask that consent is obtained from a relative or a legal representative. Others however, waive the need for informed consent and allow the doctor in charge to take responsibility for entering such patients. This study used data from the MRC CRASH Trial, an international randomised controlled trial of corticosteroids in head injury, to assess whether the practice of waiving consent results in earlier administration of the trial treatment. It was found that time from injury to randomisation was significantly reduced (1.2 hours, 95% CI 0.7 to 1.8 hours) and patient recruitment was higher in hospitals where consent was waived compared with those that required relatives consent.     

Informed consent in research to improve the number and quality of deceased donor organs

Improving the management of potential organ donors in the intensive care unit could meet an important public health goal by increasing the number and quality of transplantable organs. However, randomized clinical trials are needed to quantify the extent to which specific interventions might enhance organ recovery and outcomes among transplant recipients. Among several barriers to conducting such studies are the absence of guidelines for obtaining informed consent for such studies and the fact that deceased organ donors are not covered by extant federal regulations governing oversight of research with human subjects. This article explores the underexamined ethical issues that arise in the context of donor management studies and provides ethical guidelines and suggested regulatory oversight mechanisms to enable such studies to be conducted ethically. We conclude that both the respect that is traditionally accorded to the prior wishes of the dead and the possibility of postmortem harm support a role for surrogate consent of donors in such randomized controlled trials. Furthermore, although recipients will often be considered human subjects under federal regulations, several ethical arguments support waiving requirements for recipient consent in donor management randomized controlled trials. Finally, we suggest that new regulatory mechanisms, perhaps linked to existing regional and national organ donation and transplantation infrastructures, must be established to protect patients in donor management studies while limiting unnecessary barriers to the conduct of this important research.     

Breaking bad news: evaluation study on self-perceived competences and views of medical and nursing students taking part in a collaborative workshop

Goals of the work To identify possible effects of an interprofessional breaking bad news course for medical and nursing students on perceived key communication skills and to elicit the views of participants on interprofessional aspects of breaking bad news.Participants and methods Medical and nursing students attending an optional course on breaking bad news received a structured questionnaire on self-perceived communication skills and views on interprofessional aspects at the beginning and end of the course.Main results Forty-seven out of 54 students completed the evaluation questionnaires (response rate=87%). Medical students and nursing students rated their key communication skills after the course as significantly better compared with the beginning of the course. Medical students and nursing students disagreed with the statement that a course format for only one of the professional groups would have been more effective than the interprofessional course concept.Conclusions Students valued the concept of the interprofessional course positively. The improvement of self-perceived communication skills may be interpreted as a positive effect of the teaching session. Further research is necessary to develop strategies to implement a collaborative approach in breaking bad news in clinical practice.     

European legislation impedes critical care research and fails to protect patients' rights

The European Clinical Trials Directive requires an informed consent from the patient or a proxy in drug trials. Although informed consent is a valuable tool to protect patients' rights in clinical trials, this requirement largely impedes research in critical care settings, and if pursued in this context, it does not provide the patient with adequate protection. Instead of insisting on informed consent, we suggest that the focus should be shifted towards two other ethically relevant elements in human experimentation: risk assessment and selection of research subjects. When reviewing protocols in which a waiver of consent is deemed necessary, the Ethical Review Board should ensure that non-therapeutic risks are minimal, that the research is specifically designed to benefit critically ill patients, and that it cannot be conducted under circumstances where an informed consent can be obtained. If the European Directive is changed accordingly, this permits clinical trials in critical care settings, while adequate protection from risky non-therapeutic procedures is ensured and exploitation of the patient as an easily accessible research subject is prevented.     

ICU research: the impact of invasiveness on informed consent

Purpose

Studies into the preferences of patients and relatives regarding informed consent for intensive care unit (ICU) research are ongoing. We investigated the impact of a study’s invasiveness on the choice of who should give consent and on the modalities of informed consent.

Methods

At ICU discharge, randomized pairs of patients and relatives were asked to answer a questionnaire about informed consent for research. One group received a vignette of a noninvasive study; the other, of an invasive study. Each study comprised two scenarios, featuring either a conscious or unconscious patient. Multivariate models assessed independent factors related to their preferences.

Results

A total of 185 patients (40 %) and 125 relatives (68 %) responded. The invasiveness of a study had no impact on which people were chosen to give consent. This increased the desire to get more than one person to give consent and decreased the acceptance of deferred or two-step consent. Up to 31 % of both patients and relatives chose people other than the patient himself to give consent, even when the patient was conscious. A range of 3 to 17 % of the respondents reported that they would accept a waiving of consent. Younger respondents and individuals feeling coerced into study participation wanted to be the decision makers.

Conclusions

Study invasiveness had no impact on patients’ and relatives’ preferences about who should give consent. Many patients and relatives were reluctant to give consent alone. Deferred and two-step consent were less acceptable for the invasive study. Further work should investigate whether sharing the burden of informed consent with a second person facilitates participation in ICU research.     

Patient consent and implantable cardioverter defibrillators: some palliative care implications

The process of gaining informed consent from a patient is both complex and challenging, and the subsequent validity of that consent may be ethically open to question. Part of the process involves disclosure of risk, but with new devices the longer-term risks may not be fully known or explained to patients. In addition, with implantable cardioverter defibrillators (ICDs), it is the intended effect of the device (rather than an undesired side-effect) that becomes a potential risk and source of distress at the end of life. The duration of consent to treatment is another dimension that is often overlooked. The case study discussed within this article suggests that consent of an active device, such as an ICD, needs reviewing at times of significant change in condition, while the patient is still competent to make an autonomous decision.     

The quality of parental consent for research with children: a prospective repeated measure self-report survey

BACKGROUND: Researchers have ethical and legal responsibilities to ensure that individuals give informed consent to participate in research. The few studies of parental consent for paediatric research suggest there may be inadequate competence, information, understanding, or voluntariness for valid consent to occur. OBJECTIVES: To determine parents' level of understanding of the research study requirements and satisfaction with the informed consent process. PARTICIPANTS: English literate parents of children actively involved in research studies. METHODS: A repeated measures self-report survey was conducted to measure parent understanding (actual and perceived) of the study consented for and satisfaction with the informed consent process. Relationships between parents understanding of the research and their satisfaction with the consent process were explored and changes in parent understanding or satisfaction over time were described. RESULTS: Questionnaires from 109 parents were returned, representing 25 different studies. Parents demonstrated a high level of knowledge of information essential for informed consent, such as the purpose, benefits, and participant rights. Nervousness or inability to concentrate, and reading ease of the information sheet were found to relate to parents' knowledge and their perceptions of the adequacy of the consent. Parents overall reported high satisfaction with the consent process. CONCLUSIONS: These findings support and extend previous research on parental consent for research with children. They suggest areas where further research is indicated, including: the value and use of information and consent documents given to parents, the views and concerns of parents for whom English is not their first language, and further exploration of the concerns of the few dissatisfied parents. Current practices of obtaining informed consent for research lack supporting research evidence and may not be ethically justifiable.     

The critical patient who refuses treatment: An ethical dilemma

In clinical practice, emergency physicians must often make decisions in their patients' best interests when the patients are unable to do so themselves. The usual requirement for informed consent stems from recognizing individuals' autonomy and their right to make decisions affecting their bodies. Abandoning a requirement for consent is an emergency exception to the ethical and legal principles and comes into play only when a person lacks decision-making capacity. In some instances, it may be unclear whether a patient has this capacity, confounding the physician's management decisions. How should emergency physicians assess a patient's decision-making capacity? When may they ethically and legally override a patient's expressed desire for treatment or nontreatment? These issues are discussed in the context of an actual case.     

Informed consent in medical research

That people should only be enrolled in medical research if they have given free and informed consent is now an unquestioned principle of research ethics. It is however a recent innovation. Prior to the prominence given to consent to participation in research in the condemnation of German doctors arraigned at Nuremberg in 1945, informed consent had appeared in American litigation, but only as an issue in clinical malpractice suits. Informed consent as an ethical requirement in medical research had arisen in some earlier European contexts. Despite the Nuremberg judgement, informed consent by participants in research was not widely recognised as ethically mandatory until the early 1970s. This delay seems to have been due in part to scepticism about the practicability of truly informed consent, but medical paternalism and the circumstances surrounding military research during the Cold War period may have contributed.     

Receiving bad news: patients with haematological cancer reflect upon their experience

The literature on breaking bad news (BBN) tends to focus on professional consensus rather than empirical patient evidence--the 'giver' rather than the 'receiver'. Using semi-structured interviews, this study explores the experiences of patients with haematological cancer as they reflect on the process and content of receiving bad news. Fifteen patients with a diagnosis of leukaemia or lymphoma were recruited through a haematology service during a routine clinical visit, with the decision to participate being made later. Interviews were audiotaped, transcribed and analysed using thematic content analysis. Patients place importance on not being rushed during the bad news consultation and the doctor's manner. Receiving bad news was the first step on a journey, not an isolated incident. Doctors were regarded as the best judge of their information needs, with leaflets and written summaries as supplements. Patients had strong preferences about continuity and language use. Displays of empathy were important, but must be genuine. Patients wanted to know about likely emotional reactions and future support. Where patients brought a companion, they found this valuable. Patients concur with much of the content of the guidelines, but place more emphasis on their illness journey, the doctor's ability to adapt to their emotional needs, language used, information leaflets, having a companion and genuinely personalizing the approach. Reflection on these patient-derived factors may help health professionals better serve patients with serious illness.     

Encouraging dialogue and autonomy in the burn intensive care unit

Developing a systematic, rigorous approach to one major ethical issue--autonomous decision making by patients--as part of a standardized burn protocol ensures that the ill and injured persons we care for are given respect and a sense of control over their destiny. We cannot document a clinical, physiologic benefit to this particular approach but do find that early, frank discussions with patients, when combined with careful, active listening, help form strong care-giver-patient bonds. The patient's designation of a spokesperson to be consulted if the patient becomes unable to speak for himself prevents a great deal of anguish should the patient become comatose. The patient's wishes concerning limitations, if any, of maximal treatment are noted and respected. We believe that our approach is legally and ethically sound and can serve as one model for establishing informed consent in an intensive care setting.     

Ethics and nursing research. 1: Development, theories and principles

This article, the first of two looking at nursing ethics and research, outlines the foundations and development of an ethical framework for nursing research. The two dominant theories of ethics--utilitarianism and deontology--are described as they relate to the rights of individuals undergoing the research. Each of these approaches has limitations and in some instances choosing the right action may be difficult. The guiding ethical standards of beneficence/non-maleficence, respect for human dignity, justice, informed consent and vulnerable subjects are reviewed for the reader as they relate to undertaking research. This knowledge will help nurses conduct, participate in, or use research that is based on ethically sound principles. The second article will explore and explain the relationship between these guiding principles and the elemental steps of the research process.     

Breaking bad news.

Breaking bad news is one of a physician's most difficult duties, yet medical education typically offers little formal preparation for this daunting task. Without proper training, the discomfort and uncertainty associated with breaking bad news may lead physicians to emotionally disengage from patients. Numerous study results show that patients generally desire frank and empathetic disclosure of a terminal diagnosis or other bad news. Focused training in communication skills and techniques to facilitate breaking bad news has been demonstrated to improve patient satisfaction and physician comfort. Physicians can build on the following simple mnemonic, ABCDE, to provide hope and healing to patients receiving bad news: Advance preparation--arrange adequate time and privacy, confirm medical facts, review relevant clinical data, and emotionally prepare for the encounter. Building a therapeutic relationship-identify patient preferences regarding the disclosure of bad news. Communicating well-determine the patient's knowledge and understanding of the situation, proceed at the patient's pace, avoid medical jargon or euphemisms, allow for silence and tears, and answer questions. Dealing with patient and family reactions-assess and respond to emotional reactions and empathize with the patient. Encouraging/validating emotions--offer realistic hope based on the patient's goals and deal with your own needs.