[Intellectual disability and cancer in children: An analysis of the decision-making process]. / Déficience intellectuelle et cancer chez l'enfant : analyse des pratiques concernant le choix du traitement.

AIM: The aim was to describe and to analyze the ethics of decision-making in situations involving children with intellectual disability and cancer, from the referent-doctor's point-of-view, in pediatric oncology units in France. METHODS: Pediatricians working in pediatric oncology units were interviewed through an online questionnaire and a semi-directive interview was systematically proposed. We analyzed the ethical issues that arose during the process of decision-making and we made suggestions in order to address them. RESULTS: Sixteen doctors reported twenty-one clinical cases. Of these cases, one third of the children had a change in their oncologic treatment, with a risk of pejorative outcome on the prognosis. Despite the fact that ethical issues appeared in 80 % of the cases, there were few consultations with ethical committees. Decision-making process showed no difference compared to children without intellectual disability, thus raising ethical issues in the medical team. Our study showed discrepancy between frequently reported ethical issues, high consensus rate regarding treatment decision and lack of consultation with ethical committees. DISCUSSION: We propose three steps to guide the decision-making process in situations involving children with intellectual disability and cancer: 1/deeper understanding of the child through reinforced interactions with their caregivers, 2/better cross-boundary discussions, to improve the effectiveness of the multidisciplinary staff, and 3/more systematic ethical committees consultation.

Perinatal bereavement and palliative care offered throughout the healthcare system.

The aims of this article are twofold: (I) provide a general overview of perinatal bereavement services throughout the healthcare system and (II) identify future opportunities to improve bereavement services, including providing resources for the creation of standardized care guidelines, policies and educational opportunities across the healthcare system. Commentary is provided related to maternal child services, the neonatal intensive care unit (NICU), prenatal clinics, operating room (OR) and perioperative services, emergency department (ED), ethics, chaplaincy and palliative care services. An integrated system of care increases quality and safety and contributes to patient satisfaction. Physicians, nurses and administrators must encourage pregnancy loss support so that regardless of where in the facility the contact is made, when in the pregnancy the loss occurs, or whatever the conditions contributing to the pregnancy ending, trained caregivers are there to provide bereavement support for the family and palliative symptom management to the fetus born with a life limiting condition. The goal for respectful caregiving throughout an entire hospital system is achievable and critically important.

Frequency of use of the religious exemption in New Jersey cases of determination of brain death.

BACKGROUND: The 1981 Uniform Determination of Death Act (UDDA) established the validity of both cardio-respiratory and neurological criteria of death. However, many religious traditions including most forms of Haredi Judaism (ultra-orthodox) and many varieties of Buddhism strongly disagree with death by neurological criteria (DNC). Only one state in the U.S., New Jersey, allows for both religious exemptions to DNC and provides continuation of health insurance coverage when an exception is invoked in its 1991 Declaration of Death Act (NJDDA). There is yet no quantitative or qualitative data on the frequencies of religious exemptions in New Jersey. This study gathered information about the frequency of religious exemptions and policy in New Jersey that was created out of respect for religious beliefs. METHODS: Literature and internet searches on topics related to religious objections to DNC were conducted. Fifty-three chaplains and heads of bioethics committees in New Jersey hospitals were contacted by phone or email requesting a research interview. Respondents answered a set of questions about religious exemptions to DNC at the hospital where they worked that explored the frequency of such religious exemptions in the past five years, the religious tradition indicated, and whether any request for a religious exemption had been denied. This study was approved by the Northeastern University Institutional Review Board (IRB #: 16-03-15). RESULTS: Eighteen chaplains and bioethics committee members participated in a full research interview. Of these, five reported instances of religious exemptions to DNC occurring at the hospital at which they worked for a total of approximately 30-36 known exemptions in the past five years. Families sought religious exemptions because of faith in an Orthodox Judaism tradition and nonreligious reasons. No failed attempts to obtain an exemption were reported. CONCLUSIONS: Religious exemptions to DNC in New Jersey do occur, although very infrequently. Prior to this study, there was no information on their frequency. Considering religious exemptions do occur, there is a need for national or state policies that addresses both religious objections to DNC and hospital resources. More information is needed to better understand the impact of granting religious exemptions before new policy can be established.

Assessing Awareness and Implementation of a Recommendation for Surgical Innovation Committees: A Survey of Academic Institutions.

OBJECTIVE: In 2008, a Position Statement of the Society of University Surgeons (SUS) recommended the creation of institutional surgical innovation committees (SICs) to ensure appropriate oversight of surgical innovations. The purpose of this study was to determine the level of awareness of the position statement, and how innovations are handled in academic departments of surgery. METHODS: An electronic survey was designed to determine the level of awareness of the SUS recommendations among members of the Society of Surgical Chairs; the existence and characteristics of SICs; and alternative means of oversight of surgical innovations. RESULTS: The survey was distributed to 150 persons, and 65 (43%) surveys were returned; 84% reported their institution promoted innovative surgery as a strength, but 55% were unaware of the SUS recommendations; 23% reported that their institution has an SIC, and 20% said their institution has discussed or plans an SIC. Existing SICs have a median of 7 members; 57% reviewed 3 or fewer procedures in the prior year; and only 7% reviewed 10 or more. The majority of respondents reported alternative mechanisms of oversight, including morbidity/mortality conferences (88%), peer review (77%), and outcomes registries (51%). CONCLUSIONS: A minority of Surgery Department Chairs is aware of the SUS Position Statement. Although most reported surgical innovation was an institutional strength, only 23% had an SIC and most rely on other mechanisms of oversight. It is unclear whether academic surgical departments are committed to providing education and awareness of the appropriate development and implementation of surgical innovations.

Experience with a hospital policy on not offering cardiopulmonary resuscitation when believed more harmful than beneficial.

PURPOSE: This study investigated the impact of age, race, and functional status on decisions not to offer cardiopulmonary resuscitation (CPR) despite patient or surrogate requests that CPR be performed. METHODS: This was a retrospective cohort study of all ethics committee consultations between 2007 and 2013 at a large academic hospital with a not offering CPR policy. RESULTS: There were 134 cases of disagreement over whether to provide CPR. In 45 cases (33.6%), the patient or surrogate agreed to a do-not-resuscitate (DNR) order after initial ethics consultation. In 67 (75.3%) of the remaining 89 cases, the ethics committee recommended not offering CPR. In the other 22 (24.7%) cases, the ethics committee recommended offering CPR. There was no significant relationship between age, race, or functional status and the recommendation not to offer CPR. Patients who were not offered CPR were more likely to be critically ill (61.2% vs 18.2%, P < .001). The 90-day mortality rate among patients who were not offered CPR was 90.2%. CONCLUSIONS: There was no association between age, race, or functional status and the decision not to offer CPR made in consultation with an ethics committee. Orders to withhold CPR were more common among critically ill patients.

[Implementation of clinical ethics consultation in German hospitals]. / Wird Klinische Ethikberatung in Krankenhäusern in Deutschland implementiert?

BACKGROUND: There have been different initiatives for the implementation of clinical ethics consultation during the past years. The present study surveys current data. METHODS: A structured questionnaire was used. Of the 1,858 contacted hospitals throughout Germany 550 answered to that questionnaire (return rate 29,6 %). The survey took place between September 2013 and January 2014. RESULTS: The clinical ethics committee is the mostly implemented structure of clinical ethics consultation. Recommendations to implement those structures (ZEKO 2006, AEM 2010) show less influence than the legally binding standard (HKHG 2011). Structures of clinical ethics consultation are respected as instrument to solving ethical conflicts in clinical routines. CONCLUSIONS: Establishing ethics consultation should be promoted. Preferably appropriate legal rules for the implementation of clinical ethics consultation should be developed further as well as their structural framing.

Prevalence and characteristics of moral case deliberation in Dutch health care.

The attention for Moral case deliberation (MCD) has increased over the past years. Previous research on MCD is often written from the perspective of MCD experts or MCD participants and we lack a more distant view to the role of MCD in Dutch health care institutions in general. The purpose of this paper is to provide an overview of the state of the art concerning MCD in the Netherlands. As part of a larger national study on clinical ethics support in the Netherlands, we will focus on the prevalence and characteristics of MCD in Dutch health. A mixed methods design was used in which we combined two survey questionnaires (sent to all health care institutions), two focus groups and 17 individual interviews with top managers or ethics support staff. The findings demonstrate that the prevalence of MCD is relatively high in Dutch health care (44 % has MCD), especially in mental health care (in which MCD is mentioned as present in the organization by 62 % of the respondents). Institutions with MCD differ from institutions without MCD concerning size, kind of problems and importance of ideological background. Characteristic of MCD is that it often exists for 3 years or more, has a high participation of health professionals and middle managers and is both organized scheduled as unscheduled. As well integration in existing policy as key persons emerge as important issues in relation to the positioning of MCD. We conclude that MCD is a part of an integrated ethics policy and serves as a (bottom up) catalyst for such an integrated ethics policy.

Implicit and explicit clinical ethics support in The Netherlands: a mixed methods overview study.

Internationally, the prevalence of clinical ethics support (CES) in health care has increased over the years. Previous research on CES focused primarily on ethics committees and ethics consultation, mostly within the context of hospital care. The purpose of this article is to investigate the prevalence of different kinds of CES in various Dutch health care domains, including hospital care, mental health care, elderly care and care for people with an intellectual disability. A mixed methods design was used including two survey questionnaires, sent to all health care institutions, two focus groups and 17 interviews with managing directors or ethics support staff. The findings demonstrate that the presence of ethics committees is relatively high, especially in hospitals. Moral case deliberation (MCD) is available in about half of all Dutch health care institutions, and in two-thirds of the mental health care institutions. Ethics consultants are not very prominent. A distinction is made between explicit CES forms, in which the ethical dimension of care is structurally and professionally addressed and implicit CES forms, in which ethical issues are handled indirectly and in an organic way. Explicit CES forms often go together with implicit forms of CES. MCD might function as a bridge between the two. We conclude that explicit and implicit CES are both relevant for clinical ethics in health care. We recommend research regarding how to combine them in an appropriate way.

Barriers and facilitators to consulting hospital clinical ethics committees.

Hospitals in many countries have had clinical ethics committees for over 20 years. Despite this, there has been little research to evaluate these committees and growing evidence that they are underutilized. To address this gap, we investigated the question 'What are the barriers and facilitators nurses and physicians perceive in consulting their hospital ethics committee?' Thirty-four nurses, 10 nurse managers and 31 physicians working at four Canadian hospitals were interviewed using a semi-structured interview guide as part of a larger investigation. We used content analysis of the interview data related to barriers and facilitators to use of hospital ethics committees to identify nine categories of barriers and nine categories of facilitators. These categories as well as their subcategories are discussed and those specific to nurses or physicians are identified. The need to increase health professionals' use of clinical ethics committees through reducing barriers and maximizing facilitators is discussed.

Is the discussion of patient cases in clinical ethics-committees useful?

BACKGROUND: All health enterprises in Norway today have at least one clinical ethics committee (CEC). One of the aims is to give advice and to counsel the hospital staff on ethical issues. As part of the quality assurance of this work, we wanted to find out if clinicians have benefited from these committees in individual cases. MATERIAL AND METHODOLOGY: The local committees were requested to distribute a questionnaire to all clinicians who had submitted a case to the committee during the previous 18 months. The survey was anonymous. Out of the 86 questionnaires that were distributed, 43 (50%) were returned to the Centre for Medical Ethics. RESULTS: The majority of clinicians had a number of reasons for contacting the committee. The most usual reason was the desire to have a broad consultation on a case (70%), which was regarded as useful. The most common issue discussed was limiting the treatment of a seriously ill patient (56%), the will/wishes of the next-of-kin (40%) and patient autonomy (37%). The committee gave advice in 50% of the cases. Thirty-eight percent of the consultations resulted in practical consequences, including the discontinuation of treatment in six cases. INTERPRETATION: Because of the low response percentage, the results must be interpreted with caution. The work of the committees is generally evaluated as useful, and the consultations can have practical consequences. However, it is challenging to make this work better known among clinicians and to conduct quality assurance.

'Do not attempt resuscitation' and 'cardiopulmonary resuscitation' in an inpatient setting: factors influencing physicians' decisions in Switzerland.

OBJECTIVE: To determine the prevalence of cardiopulmonary resuscitation (CPR) and do-not-attempt-resuscitation (DNAR) orders, to define factors associated with CPR/DNAR orders and to explore how physicians make and document these decisions. METHODS: We prospectively reviewed CPR/DNAR forms of 1,446 patients admitted to the General Internal Medicine Department of the Geneva University Hospitals, a tertiary-care teaching hospital in Switzerland. We additionally administered a face-to-face survey to residents in charge of 206 patients including DNAR and CPR orders, with or without patient inclusion. RESULTS: 21.2% of the patients had a DNAR order, 61.7% a CPR order and 17.1% had neither. The two main factors associated with DNAR orders were a worse prognosis and/or a worse quality of life. Others factors were an older age, cancer and psychiatric diagnoses, and the absence of decision-making capacity. Residents gave four major justifications for DNAR orders: important comorbid conditions (34%), the patients' or their family's resuscitation preferences (18%), the patients' age (14.2%), and the absence of decision-making capacity (8%). Residents who wrote DNAR orders were more experienced. In many of the DNAR or CPR forms (19.8 and 16%, respectively), the order was written using a variety of formulations. For 24% of the residents, the distinction between the resuscitation order and the care objective was not clear. 38% of the residents found the resuscitation form useful. CONCLUSION: Patients' prognosis and quality of life were the two main independent factors associated with CPR/DNAR orders. However, in the majority of cases, residents evaluated prognosis only intuitively, and quality of life without involving the patients. The distinction between CPR/DNAR orders and the care objectives was not always clear. Specific training regarding CPR/DNAR orders is necessary to improve the CPR/DNAR decision process used by physicians.

The presence of ethics programs in critical access hospitals.

The purpose of this study was to assess the presence of ethics committees in rural critical access hospitals across the United States. Several studies have investigated the presence of ethics committees in rural health care facilities. The limitation of these studies is in the definition of 'rural hospital' and a regional or state focus. These limitations have created large variations in the study findings. In this nation-wide study we used the criteria of a critical access hospital (CAH), as defined by the Medicare Rural Hospital Flexibility Program (Flex Program, 2007), to bring consistency and clarity to the assessment of the presence of ethics committees in rural hospitals. The Flex Monitoring Team conducted a national telephone survey of 381 CAH administrators throughout the United States. The survey covered a wide variety of questions concerning hospitals' community benefit, impact activities, and whether the hospital had a formally established an ethics committee. About 230 (60%) of the respondents indicated they had a formally established ethics committee or ethics consultation program at their CAH. The prevalence of ethics committees declined as the CAH location became increasingly rural along a rural-urban continuum. Unlike CAHs, all rural Department of Veterans Affairs Medical Centers have ethics committees. The results of this study provide an understanding of the limited presence of ethics committee in rural America and the need to consider new approaches for providing ethics assistance. A virtual ethics committee network may be the most efficient and effective way of providing rural hospitals access to a knowledgeable ethics committee or consultant.

Ethics consultation at a large urban public teaching hospital.

OBJECTIVES: To describe the population served and issues encountered by Hospital Ethics Committee consultation, to describe the incidence of consultation per hospital admission, and to describe the resource utilization per consult. PATIENTS AND METHODS: This is a retrospective review of all ethics consults at a large urban teaching hospital and level one trauma center in a metropolitan area from January 1, 2004, through December 31, 2006. The data points analyzed were patient demographics, time spent by consultants (resource utilization), and the choice to pursue a full consult, which differs from a brief consult by the number of ethics consultants involved and the formality of the deliberative process. RESULTS: A total of 285 consults were conducted or 0.16% (95% confidence interval, 0.14%-0.18%) of all hospital admissions. The highest incidence was 0.88% (95% confidence interval, 0.59%-1.3%) for the trauma intensive care unit. The average age of patients consulted on was 51 years, and 54% were in the intensive care unit. Of the consults, 90% were brief, and 52% were requested by house staff. Consultants logged 60,368 minutes, 38% of which were devoted to full consults (10% of total). Consults in obstetrics, general medicine, and surgery were the most time-consuming. Pregnancy and human immunodeficiency virus were more prevalent in full consults. The "classic" ethics cases of confidentiality (5%), patients requesting futile treatment (5%), brain death (4%), error disclosure (1%), and organ-donor rights (0.3%) were marginal in our series. CONCLUSION: Little data exist on the practice of ethics consultation services. To our knowledge, this series represents the largest to date. Specific issues, patient characteristics, and hospital services were more prevalent in the most time-consuming consults. These data can be used to target the education of residents and inform hospital quality initiatives.

Consultation activities of clinical ethics committees in the United Kingdom: an empirical study and wake-up call.

OBJECTIVE: To identify the consultation activities of clinical ethics committees (CECs) in the UK and the views of CEC chairpersons regarding such activities. METHODS: An anonymous, password-protected online questionnaire was sent by e-mail to 70 CEC chairpersons. The questionnaire contained 14 items. RESULTS: Of the 70 CECs contacted, 30 responded (a response rate of 43%). There has been an almost fourfold increase in the number of CECs in the past 7 years. Over half of the CECs that responded had considered three or fewer active cases and three or fewer retrospective cases in the preceding year. Eighty percent of chairpersons felt that the number of active cases considered by their committee was too low. Seventy percent of CECs had rapid response teams. Aside from low consultation caseloads, chairpersons identified a number of concerns, including education and training of members, composition of CECs, low profile and lack of funding and support. Although most respondents believed there is a need for clinical ethics support in the NHS, many noted the limited use of the services, even after efforts to increase the visibility of their CEC. CONCLUSION: Despite a sharp increase in the absolute numbers of CECs across the UK, the number of cases considered by the majority of CECs is low. The findings presented here suggest we must reflect on the reasons for such low caseloads and pause to consider whether the committee model is most appropriate for the UK context.

A survey of Louisiana hospital ethics committees.

OBJECTIVES: To obtain a picture of hospital ethics committees (HECs) in the State of Louisiana. Compare results to other published studies. Gauge interest and participation in HECs by otolaryngologists. STUDY DESIGN: Mail in questionnaire to all hospitals in Louisiana. Minisurvey distributed to randomly selected otolaryngologists. METHODS: A questionnaire was mailed to the 194 hospitals identified by the Louisiana State Hospital Association. Questions included the presence and description of HECs plus the demographic data for the hospitals. RESULTS: Eighty-eight hospitals returned the survey. A HEC was present in 69. Membership was most often multidisciplinary. The annual growth rate ranged from 1.7% to 6%-8%. Teaching hospitals and larger hospitals tended to have a higher frequency rate of HECs. Like most US HECs, this state's committee primary functions included case consultation, education, and policy review. About 30% of otolaryngologists surveyed had some experience with a HEC. CONCLUSIONS: Louisiana's HEC construction and function appear similar to those committees found in other US hospitals. Membership is multidisciplinary. The three major functions are education, policy development and case consultation. Larger institutions tend to have a higher frequency of HECs. The growth rate of HECs increased in the early 1990s. As the ethical issues in contemporary medicine become more complex, especially with technological advances, HECs can anticipate constant new challenges. Future direction may focus on the evaluation of how well HECs function and on how improvements can be made.

Barriers and challenges in clinical ethics consultations: the experiences of nine clinical ethics committees.

Clinical ethics committees have recently been established in nearly all Norwegian hospital trusts. One important task for these committees is clinical ethics consultations. This qualitative study explores significant barriers confronting the ethics committees in providing such consultation services. The interviews with the committees indicate that there is a substantial need for clinical ethics support services and, in general, the committee members expressed a great deal of enthusiasm for the committee work. They also reported, however, that tendencies to evade moral disagreement, conflict, and 'outsiders' are common in the hospitals. Sometimes even the committees comply with some of these tendencies. The committees agree that there is a need to improve their routines and procedures, clarify the committees' profile and field of responsibility, to make the committees well-known, to secure adequate operating conditions, and to develop organizational integration and support. Various strategies to meet these challenges on a local, regional or national level are also explored in this paper.

[Hospital clinical ethics committees]. / Los comités hospitalarios de ética clínica.

The scientific and technological advances have been surprising, more in the two last decades, but they don't go united with to the ethical values of the medical professional practice, it has been totally escaped, specially when the biological subsistence, the maintenance of the life through apparatuses and the mechanisms that prolong the existence are who undergoes an alteration that until recently time was mortal shortly lapse. It is common listening that exist a crisis in the medical profession, but what really is it of human values, which as soon and taken into nowadays, actually professional account, which gives rise to a dehumanization towards the life, the health, the disease, the suffering and the death. The ideal of the doctor to give to service to the man in its life and health, as well to be conscious that the last biological process that must fulfill is the death, and when it appears, does not have considered as a actually professional failure. It has protect to the patient as the extreme cruelty therapeutic, that it has right a worthy death. It's taking to the birth of the hospital ethics committees, they have like function to analyze, to advise and to think about the ethical dilemmas that appear actually clinical or in the biomedical investigation. In 1982 in the UEA only 1% of its hospitals had a ethics committees; by 1988, it was 67% and the 100% in 2000. In Mexico the process of the formation by these committees begins, only in the Military Central Hospital, to count the ethics committee on 1983, also the Hospital no. 14 of the IMSS in Guadalajara, it works with regularity from 1995, with internal teaching of bioethic. The Secretariat of Health has asked the formation of the bioethical committees in each hospital, and order the it was be coordinated by the National Committee of Bioética. The integration of these committees is indispensable that their members have the knowledge necessary of bioética. The Mexican Society of Ortopedia, conscious of the responsibility that will have these Committees, presents/displays the following article, with the bioética commite and the support to this in other hospitable units.

Physicians' access to ethics support services in four European countries.

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as clinical ethics committees (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P=0.001), or who had had ethics courses in medical school (P=0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensitivity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available.

An eight-year follow-up national study of medical school and general hospital ethics committees in Japan.

BACKGROUND: Ethics committees and their system of research protocol peer-review are currently used worldwide. To ensure an international standard for research ethics and safety, however, data is needed on the quality and function of each nation's ethics committees. The purpose of this study was to describe the characteristics and developments of ethics committees established at medical schools and general hospitals in Japan. METHODS: This study consisted of four national surveys sent twice over a period of eight years to two separate samples. The first target was the ethics committees of all 80 medical schools and the second target was all general hospitals with over 300 beds in Japan (n = 1457 in 1996 and n = 1491 in 2002). Instruments contained four sections: (1) committee structure, (2) frequency of annual meetings, (3) committee function, and (4) existence of a set of guidelines for the refusal of blood transfusion by Jehovah's Witnesses. RESULTS: Committee structure was overall interdisciplinary. Frequency of annual meetings increased significantly for both medical school and hospital ethics committees over the eight years. The primary activities for medical school and hospital ethics committees were research protocol reviews and policy making. Results also showed a significant increase in the use of ethical guidelines, particularly those related to the refusal of blood transfusion by Jehovah's Witnesses, among both medical school and hospital ethics committees. CONCLUSION: Overall findings indicated a greater recognized degree of responsibilities and an increase in workload for Japanese ethics committees.