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Unanticipated harm to patients: deciding when to disclose outcomes.

BACKGROUND: Patient safety standards of the Joint Commission on Accreditation of Healthcare Organizations require that "patients and, when appropriate, their families are informed about the outcomes of care, including unanticipated outcomes." WHAT OUTCOMES SHOULD TRIGGER DISCLOSURE: Given that all medical treatments have an array of possible outcomes, how do we confidently say that an outcome is unanticipated? It is proposed that an adverse outcome meet one of two criteria to be considered unanticipated: (1) It would not be included in a reasonable informed consent process for treatment of the patient's condition(s) and/or would not be expected during the usual course of treatment; and (2) it may have been caused by human or systemic error--that is, it is not immediately possible to clearly and decisively rule out error. This definition requires less judgment because it represents an extension of the existing norms of communication that are expressed through the process of informed consent. The norms of the informed consent process require that the patient be given all pertinent information needed to participate in future treatment decision making. CONCLUSIONS AND RECOMMENDATIONS FOR ORGANIZATIONAL POLICIES: Institutional policies and procedures should provide a clear approach to the identification, reporting, and discussion of unanticipated adverse outcomes, whether or not they are associated with error, as well as guidance and an educational program to help physicians, staff, and students disclose unanticipated adverse events and error in the most appropriate manner.

Humans↗

Development and health care needs of lesbians.

Lesbians have complained about the lack of awareness and sensitivity of their health care providers, resulting in unnecessary examinations and inappropriate focus on reproductive issues. This study attempted to identify psychosocial and health care needs of lesbians, to assess relationships with primary care providers and disclosure of sexual orientation, and to describe the chronologic features of a sexual identity and lifestyle. An anonymous, self-administered written questionnaire was distributed through a campus lesbian organization. Fifty-three women (median age 23 years) completed the questionnaire. Whereas 60% had disclosed their sexual orientation to their parents, only 31% had "come out" to their health care provider. Of participants who had disclosed their sexual preference to a provider, 27% reported a negative effect on their health care, 57% of participants who never had penile intercourse had annual Papanicolaou smears, and 16% felt pressured in the past to accept birth control from a physician. Lesbian sexuality was associated with several risk factors, such as childhood abuse (20%), alcohol or drug problems (39%), suicide attempts (27%), depression (49%), and physical or verbal abuse at school (34%). Average age of awareness of sexual orientation was 15 years, and average age of first homosexual activity was 17 years. Lesbians are at risk for depression, substance abuse, and suicide attempts. Although most would like to confide in their physician, few do because of fears of negative reactions. Communication must be improved to better address their specific health care needs.

Adult↗

Assessing surgeons' disclosure of risk information before carotid endarterectomy.

BACKGROUND: To make an informed decision about treatment, patients need accurate information about the benefits and risks of treatment and 'non-treatment' options. A survey was conducted to determine patients' recall of the extent and effect of preoperative disclosure by surgeons to patients of risks about carotid endarterectomy (CEA). METHODS: A self-administered questionnaire was given to 133 patients undergoing elective CEA in New South Wales. The primary outcome measures were patient recall of preoperative discussion, self-assessed estimates of stroke risk with and without surgery and receipt of written information before CEA. RESULTS: A significantly higher proportion of patients recalled that their surgeon discussed the short-term stroke risk (i.e. within 30 days) if they decided to undergo CEA (86.2%) than if they decided not to have the procedure (76.9%) (P = 0.04). Of those patients who recalled the surgeon discussing their short-term stroke risk with CEA, only 24 (18.0%) were accurately able to quantify this risk. Patients were significantly more likely to recall their surgeon discussing their long-term stroke risk (i.e. within 2 years) if they decided not to have CEA (72.4%) than if they decided to have the CEA (31.5%) (P < 0.0001). CONCLUSIONS: Patients recalled discussions with their surgeon about short-term stroke risk. Only a minority, however, accurately quantified their postoperative stroke risk. In view of variable patient recall, decision aids could assist.

Aged↗

The factors associated with disclosure of intimate partner abuse to clinicians.

OBJECTIVE: Our goal was to identify the prevalence, determinants of, and barriers to clinician-patient communication about intimate partner abuse. STUDY DESIGN: We conducted telephone interviews with a random sample of ethnically diverse abused women. POPULATION: We included a total of 375 African American, Latina, and non-Latina white women aged 18 to 46 years with histories of intimate partner abuse who attended 1 of 3 primary care clinics in San Francisco, California, in 1997. OUTCOMES MEASURED: We measured the relevance and determinants of past communication with clinicians about abuse and barriers to communication. RESULTS: Forty-two percent (159) of the patients reported having communicated with a clinician about abuse. Significant independent predictors of communication were direct clinician questioning about abuse (odds ratio [OR]=4.6; 95% confidence interval [CI] 3.2-6.6), and African American ethnicity (OR=1.8; 95% CI, 1.1-2.9). Factors associated with lack of communication about abuse included immigrant status (OR=0.6; 95% CI, 0.3-1.0) and patient concerns about confidentiality (OR=0.7; 95% CI, 0.5-0.9). Barriers significantly associated with lack of communication were patients' perceptions that clinicians did not ask directly about abuse, beliefs that clinicians lack time and interest in discussing abuse, fears about involving police and courts, and concerns about confidentiality. CONCLUSIONS: Clinician inquiry appears to be one of the strongest determinants of communication with patients about partner abuse. Other factors that need to be addressed include patient perceptions regarding clinicians' time and interest in discussing abuse, fear of police or court involvement, and patient concerns about confidentiality.

Adolescent↗

Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information.

PURPOSE: Concerns about the harms of prognostic information, including distress and loss of hope, cause some physicians to avoid frank disclosure. We aimed to determine parent preferences for prognostic information about their children with cancer and the results of receiving such information. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. Our main outcome measure was parent rating of prognostic information as extremely or very upsetting. RESULTS: The majority of parents desired as much information about prognosis as possible (87%) and wanted it expressed numerically (85%). Although 36% of parents found information about prognosis to be extremely or very upsetting, those parents were more likely to want additional information about prognosis than those who were less upset (P = .01). Parents who found information upsetting were no less likely to say that knowing prognosis was important (P = .39), that knowing prognosis helped in decision making (P = .40), or that hope for a cure kept them going (P = .72). CONCLUSION: Although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents' desire for such information, its importance to decision making, or parents' sense of hope.

Adolescent↗

Information needs of recently diagnosed cancer patients in Brazil.

OBJECTIVE: The communication and disclosure of medical information to cancer patients has been an important issue in oncology, reflecting changes in the physicians' approach when dealing with the patients' ethical right to receive information. The aim of this study was to assess the general and specific information desired by cancer patients regarding their health conditions and to evaluate minor psychiatric symptoms. METHOD: Two-hundred and ninety-eight patients were examined at an oncological cancer center in São Paulo, Brazil, using a questionnaire designed to investigate patients' preferences about cancer information and evaluate minor psychiatric symptoms. RESULT: Ninety-five percent of the patients were interested in obtaining information on their health condition, with regard to whether they had cancer (95%), the chances of recovery (89%), and the side effects during treatment (94%). Younger patients tended to show more interest in obtaining information than the elderly. The Self-Reporting Questionnaire classified 25.8% of the sample as a probable psychiatric case, but no correlation was found between Self-Reporting Questionnaire scores and patients' desires for medical information. CONCLUSION: The majority of patients wished to be informed about their illness condition, and no correlation was found between psychiatric morbidity and desire for information.

Adult↗

What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study.

OBJECTIVE: To obtain feedback from patients receiving palliative care and their relatives from various ethnic backgrounds about their experiences of the disclosure process and their satisfaction with information sharing during the illness. DESIGN: A qualitative study with semistructured single interviews. SETTING: Perth, Western Australia, and Winnipeg, Manitoba, Canada. PARTICIPANTS: 72 participants registered with palliative care: 21 patient-family dyads in Perth and 14 dyads and 2 patients in Winnipeg. RESULTS: Participants described their experiences in great detail. The analysis indicates that in information sharing the process is as important as the content. The timing, management, and delivery of information and perceived attitude of practitioners were critical to the process. This applied to information interactions at all stages of the illness. Main content areas mentioned related to prognosis and hope. Hope can be conveyed in different ways. Secondary information from various sources is accessed and synthesised with the primary information. All patients, regardless of origin, wanted information about their illness and wanted it fully shared with relatives. Almost all patients requested prognostic information, and all family members respected their wishes. Information was perceived as important for patient-family communication. Information needs of patient and family changed and diverged as illness progressed, and communication between them became less verbally explicit. CONCLUSIONS: Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers.

Adult↗

Quantity and quality of information desired by Portuguese cancer patients.

Disclosure of the diagnosis of cancer to the patients affected has always been a controversial issue in the doctor-patient relationship. Undoubtedly this is so not only because of differences between countries and cultures, but also because there have been changes of opinion over the years. The aim of this study was to evaluate the quality and quantity of information desired by Portuguese cancer patients, and how and from whom they want to hear this information. Our sample comprised a total of 193 cancer patients, 87 men and 106 women. We found that 68.9% knew what their diagnosis was. In our sample, 74% wanted "as much information as possible, good or bad"; 85% said they wanted to know if their disease was cancer; 95% wanted to know the best or worst likely outcome of their disease; and 96.4% wanted to know the chances of getting cured. Most patients said they would prefer to be informed by physicians (92.7%) and have access to a telephone help-line, books and television. In conclusion, most patients wanted to know as much as possible about their illness and treatment, and the majority preferred to be involved in treatment decisions.

Adult↗

Is sexual abuse of children with disabilities disclosed? A retrospective analysis of child disability and the likelihood of sexual abuse among those attending Norwegian hospitals.

OBJECTIVE: According to North American studies disabled children are at 2-3 times greater risk of being sexually abused than non-disabled. If the risk ratio for disabled children in Norway is similar, and the disclosure of sexual abuse is the same for disabled as for non-disabled, one should expect disabled children to constitute 2-3 times the 11% they constitute in the general population. This research aimed to investigate if this is the case for Norwegian children, and to find characteristics within in the handicapped group suspected of being sexually assaulted. METHOD: A questionnaire was addressed to all Norwegian pediatric hospitals. Of interest were numbers of children having a medical examination for possible sexual assault in the years 1994-1996, the number with a smaller or severe disability, a description of the disability, age and gender, and the conclusion of the examination as to the likelihood of sexual abuse. RESULTS: The severely disabled children constituted only 1.7% of the examined 1293 children. Altogether, 6.4% of the children had a smaller or severe disability. These children were more often assessed as "probably assaulted" than the non-disabled. The disabled group had a larger part of boys than the non-disabled group. CONCLUSIONS: Children with disabilities make up a smaller part of children coming to pediatric hospitals with the suspicion of being sexually abused than expected. The results indicate that when a child has a severe disability, the caretakers do not seem to recognize it as sexual abuse before it is quite obvious.

Adolescent↗

Getting doctors to report medical errors: project DISCLOSE.

BACKGROUND: Despite the number of patient safety incidents that occur in hospitals, physicians currently may not have the ideal incident reporting tools for easy disclosure. A study was undertaken to assess the effectiveness of a simplified paper incident reporting process for internal medicine physicians on uncovering patient safety incidents. DESIGN: Thirty-nine internal medicine attending physicians were instructed to incorporate the use of a simplified paper incident reporting tool (DISCLOSE) into daily patient rounds during a three-month period. All physicians were surveyed at the conclusion of the three months. RESULTS: Compared with physician reporting via the hospital's traditional incident reports from the same time period, a higher number (98 incidents versus 37; a 2.6-fold increase) of incidents were uncovered using the DISCLOSE reporting tool in a larger number of error categories (58 versus 14, a 4.1-fold increase). When reviewed and classified with a five-point harm scale, 41% of events were judged to have reached patients but not caused harm, 33% to have resulted in temporary harm, and 9% of reports, though not considered events, were to indicate a "risky situation." Surveyed physicians were more satisfied with the process of submitting incident reports using the new DISCLOSE tool. DISCUSSION: A simplified incident reporting process at the point of care generated a larger number and breadth of physician disclosed error categories, and increased physician satisfaction with the process.

Attitude of Health Personnel↗

Disclosure of familial genetic information: perceptions of the duty to inform.

BACKGROUND: The familial implications of genetic information can lead to a conflict between a physician's duties to maintain patient confidentiality and to inform at-risk relatives about susceptibility to genetic diseases. As genes are discovered that can identify patients at risk of adverse outcomes, this conflict has become the subject of discussion and debate. METHODS: We performed a one-time telephone survey of a population-based sample of 200 Jewish women to assess knowledge and attitudes about genetic testing. Attitudes toward sharing genetic test results with family members were evaluated using three hypothetical scenarios that described an easily preventable disease, a disease (breast cancer) in which the only option for prevention was prophylactic mastectomies, and a nonpreventable disease. RESULTS: Nearly all respondents believed that a patient should inform at-risk family members when the disease was preventable (100% and 97% in the relevant scenarios), compared with only 85% who felt a duty to inform at-risk family members about a nonpreventable disease (P <0.001). The proportions of respondents who believed that physicians should seek out and inform at-risk family members against a patient's wishes was much lower: only 18% of respondents to the easily preventable disease scenario, 22% of respondents to the breast cancer scenario, and 16% of respondents to the nonpreventable disease scenario. CONCLUSIONS: Most women surveyed believed that genetic information should be shared within families, unless it violated a patient's wishes. These sorts of opinions should be considered in the debate over the confidentiality of genetic information.

Adult↗

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

UNLABELLED: 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.

Attitude of Health Personnel↗

Communicating with realism and hope: incurable cancer patients' views on the disclosure of prognosis.

PURPOSE: To identify preferences for the process of prognostic discussion among patients with incurable metastatic cancer and variables associated with those preferences. PATIENTS AND METHODS: One hundred twenty-six (58%) of 218 patients invited onto the study participated. Eligible patients were the consecutive metastatic cancer patients of 30 oncologists, who were diagnosed within 6 weeks to 6 months before recruitment, over 18 years of age, and without known mental illness. Patients completed a postal survey measuring patient preferences for the manner of delivery of prognostic information, including how doctors might instill hope. RESULTS: Ninety-eight percent of patients wanted their doctor to be realistic, provide an opportunity to ask questions, and acknowledge them as an individual when discussing prognosis. Doctor behaviors rated the most hope giving included offering the most up to date treatment (90%), appearing to know all there is to know about the patient's cancer (87%), and saying that pain will be controlled (87%). The majority of patients indicated that the doctor appearing to be nervous or uncomfortable (91%), giving the prognosis to the family first (87%), or using euphemisms (82%) would not facilitate hope. Factor analysis revealed six general styles and three hope factors; the most strongly endorsed styles were realism and individualized care and the expert/positive/collaborative approach. A range of demographic, psychological, and disease factors were associated with preferred general and hope-giving styles, including anxiety, information-seeking behavior, expected survival, and age. CONCLUSION: The majority of patients preferred a realistic and individualized approach from the cancer specialist and detailed information when discussing prognosis.

Adult↗

[Information disclosure when screening for trisomy 21: a decision-making aid for pregnant women?].

We examined the contribution to decision-making of the information that is disclosed to women confronted with the proposition of screening for Down syndrome and when receiving the results. This review highlights the main results of a survey initiated by the French Ministry of Health. The purpose of this survey was to assess the modalities of prescription and results communication of the test, and also to determine the women's opinion concerning the information they had received. A large percentage of the women were dissatisfied with the information received before the test prescription, a percentage that was even more marked when the test results were delivered. Information was frequently regarded as not contributing to the decision-making process about testing and the data analysis suggested that information may not be adequate to prepare women for the decisions implied in the test results. However, a direct relationship cannot be established between satisfaction with information and contribution of the information to decision making: information may be considered as contributing to the decision although women did not understand the explanations; the contribution to decision-making does not have the same meaning when the test is proposed as a routine test (i.e. a self-evident act) or not. Finally, from the women's point of view, to make the "best possible" decision would require that health professionals' preferences regarding the information to be disclosed converge with the women's expectations regarding information, and with their preferences concerning the implication of health professionals in the decision-making process. In an operational perspective, the use of information and decision-making aid instruments could facilitate the elicitation of preferences and expectations.

Attitude to Health↗

Disclosure to the family of breast/ovarian cancer genetic test results: patient's willingness and associated factors.

Informed probands are key actors for disclosing genetic information to their relatives when a mutation has been identified in the family. The objectives were to study women's attitudes towards the family disclosure of positive breast cancer genetic testing results and to determine the predictive factors of the diffusion patterns observed. A national multi-center cross-sectional survey was carried out at five French cancer genetic clinics during a 1-year period. Self-administered questionnaires were completed after the consultation by 84.5% (398/471) of women attending breast cancer genetic clinics for the first time. Among the 383 respondents who had at least one living first-degree relative to inform, 8.6% would inform none, 33.2% would inform at least one of them, and 58.2% would inform all of them. The sibship would be the most frequently informed blood relatives, sisters in 86.9% and brothers in 79% compared with mother in 71.4%, children in 70.4%, and father in 64.9%. Women of the family would be more frequently informed than men (P < 0.05). After multivariate adjustment, age, the fact to be affected by cancer, the number of daughters, and the emotional disturbance due to cancer in a close relationship were the main determinants (P < 0.05) of the diffusion patterns observed. The first step of the relatives' attendance to genetic counseling and the proband's willingness to disclose breast cancer genetic tests results was high in this study and was clearly dependent on the women's personal and emotional characteristics.

Adult↗

Physician incentives and disclosure of payment methods to patients.

OBJECTIVE: There is increasing public discussion of the value of disclosing how physicians are paid. However, little is known about patients' awareness of and interest in physician payment information or its potential impact on patients' evaluation of their care. DESIGN: Cross-sectional survey SETTING: Managed care and indemnity plans of a large, national health insurer. PARTICIPANTS: Telephone interviews were conducted with 2,086 adult patients in Atlanta, Ga; Baltimore, Md/Washington DC; and Orlando, Fla (response rate, 54%). MEASUREMENTS AND MAIN RESULTS: Patients were interviewed to assess perceptions of their physicians' payment method, preference for disclosure, and perceived effect of different financial incentives on quality of care. Non-managed fee-for-service patients (44%) were more likely to correctly identify how their physicians were paid than those with salaried (32%) or capitated (16%) physicians. Just over half (54%) wanted to be informed about their physicians' payment METHOD: Patients of capitated and salaried physicians were as likely to want disclosure as patients of fee-for-service physicians. College graduates were more likely to prefer disclosure than other patients. Many patients (76%) thought a bonus paid for ordering fewer than the average number of tests would adversely affect the quality of their care. About half of the patients (53%) thought a particular type of withhold would adversely affect the quality of their care. White patients, college graduates, and those who had higher incomes were more likely to think that these types of bonuses and withholds would have a negative impact on their care. Among patients who believed that these types of bonuses adversely affected care, those with non-managed fee-for-service insurance and college graduates were more willing to pay a higher deductible or co-payment in order to get tests that they thought were necessary. CONCLUSIONS: Most patients were unaware of how their physicians are paid, and only about half wanted to know. Most believed that bonuses or withholds designed to reduce the use of services would adversely affect the quality of their care. Lack of knowledge combined with strong attitudes about various financial incentives suggest that improved patient education could clarify patient understanding of the nature and rationale for different types of incentives. More public discussion of this important topic is warranted.

Adult↗

Breaking bad news: experiences and preferences of advanced cancer patients at a Portuguese oncology centre.

The disclosure of information to patients about diagnosis and prognosis and other aspects of care is still a matter of debate. We have conducted a study in advanced cancer patients about their experiences and preferences concerning this issue. A questionnaire was developed and completed during the first appointment in the outpatient clinic of an oncology centre's palliative care unit, before the patient had any contact with the staff of the unit. The study was conducted on a convenience sample of 47 patients. We found that 34 (72%) of those patients thought they had been informed of their diagnosis, most of them by the hospital doctor. However, not all stated the diagnosis in a manner clearly showing that they were aware of the nature of their disease. Most patients were with a family member when the diagnosis was disclosed, which is what the majority had preferred. Of the 13 uninformed patients, only one preferred to remain uninformed. Most patients (89%) participated in decisions concerning treatment, although only 68% thought they should have participated. Some 39 patients (83%) were informed that they were being referred to the palliative care unit, but surprisingly only eight had received an explanation of the unit's function. We concluded that, although most patients had been informed of their disease, there remains many problems, the most important of which, in our view, is the difference between the information provided and the patients' needs.

Adult↗

The validity and reliability of the affective competency score to evaluate death disclosure using standardized patients.

OBJECTIVE: To explore the validity and reliability of the affective competency score (ACS), compared to a global rating measure to predict overall competency to perform a death disclosure in a standardized patient exercise and to investigate useful thresholds of the ACS. METHODS: Thirty-seven fourth-year students underwent standardized patient training in death disclosure during a fourth-year emergency medicine clerkship. Students were evaluated using a checklist, an ACS, and a global rating assessment. ACS interrater reliability, interitem reliability, item-total reliability, and split-half reliability were calculated. Area under the curve (AUC) measurements were used to establish criterion validity. RESULTS: For the ACS, item-total correlations ranged from 0.76 to 0.85, 0.76 to 0.93, and 0.42 to 0.87; the split-half reliability was 0.82 (p = 0.0001), 0.86 (p = 0.0001) and 0.55 (p = 0.0007) for the standardized patient (SP), the faculty and the medical students, respectively. Interitem correlations were adequate. A moderate interrater correlation of the ACS was observed between the faculty observer and the SP (r = 0.47; p = 0.04); however, the medical students' self evaluation did not correlate significantly with either the SP (r = -0.04; p = 0.79), or the faculty observer (r = 0.00; p = 0.99). The AUC for was 0.98 (95% confidence interval [CI] 0.94 to 1.00), 0.87 (95% CI 0.73 to 0.99), and 0.74 (95% CI 0.53 to 0.95) for the faculty, SP, and medical student, respectively. CONCLUSIONS: The ACS may be a valid, reliable, and useful measure to assess communication skills by faculty or SPs in this setting. At an ACS score of 16, 19, and 21 points for faculty, SPs, and medical students, respectively, there is 100% specificity for the detection of competency assessed on a global rating. However, the ACS appears to have limited reliability and validity when used by medical students.

Adult↗