Gil Siegal

EHRA Expert Consensus Statement on the management of cardiovascular implantable electronic devices in patients nearing end of life or requesting withdrawal of therapy

The purpose of this Consensus Statement is to focus on implantable cardioverter-defibrillator (ICD) deactivation in patients with irreversible or terminal illness. This statement summarizes the opinions of the Task Force members, convened by the European Heart Rhythm Association (EHRA) and the Heart Rhythm Society (HRS), based on ethical and legal principles, as well as their own clinical, scientific, and technical experience. It is directed to all healthcare professionals who treat patients with implanted ICDs, nearing end of life, in order to improve the patient dying process. This statement is not intended to recommend or promote device deactivation. Rather, the ultimate judgement regarding this procedure must be made by the patient (or in special conditions by his/her legal representative) after careful communication about the deactivations consequences, respecting his/her autonomy and clarifying that he/she has a legal and ethical right to refuse it. Obviously, the physician asked to deactivate the ICD and the industry representative asked to assist can conscientiously object to and refuse to perform device deactivation.

Role of diagnosis-specific information sheets in parents' understanding of emergency department discharge instructions.

Objectives To investigate the contribution of diagnosis-specific information sheets at discharge from the emergency department on parental understanding of the discharge instructions. Methods The study group consisted of a convenience sample of parents of children discharged home from the emergency department of an urban tertiary care pediatric facility (n=95). At discharge by the physician, all were given a disease-specific information sheet to accompany the physicians discharge instructions. Thereafter, the parents were asked to complete the same 13-item questionnaire used in our previous study, covering demographics, level of anxiety, and quality of physicians explanation, in addition to a description, in their own words, of their childs diagnosis and treatment instruction and an indication of their preferred auxiliary method of delivery of information. The findings were compared with the study group in the first phase study (n=287) who did not receive the disease-specific information sheet. The BMDP statistical package was used for the analysis. Results No statistically significant differences between the two groups in age, sex, and education, level of anxiety before or after the emergency department visit, or time of day were observed. Full understanding of the diagnosis was noted in 73% of the parents who received the information sheet and 72% of the parents in our previous study who did not. Corresponding rates of understanding of the treatment instructions were 92% and 82%. On statistical analysis, the distribution of the diagnosis-specific information sheet significantly improved parental understanding of the treatment instructions (P=0.025), but not of the diagnosis (P=0.54). Conclusions Although overall parental understanding of emergency department discharge instructions is good, understanding of the treatment instructions can be further improved with the use of diagnosis-specific information sheets.

Closing the Organ Gap: A Reciprocity-Based Social Contract Approach

Organ transplantation remains one of modern medicine’s remarkable achievements. It saves lives, improves quality of life, diminishes healthcare expenditures in end-stage renal patients, and enjoys high success rates. Yet the promise of transplantation is substantially compromised by the scarcity of organs. The gap between the number of patients on waiting lists and the number of available organs continues to grow. As of January 2006, the combined waiting list for all organs in the United States was 90,284 (64,933, 17,269, and 3,006 for kidney, liver, and heart respectively). Unfortunately, thousands of potential organs are lost each year, primarily due to lack of consent to donation from the deceased before death, or from the family thereafter. Only fifty percent of potential donors – the “conversion” rate – become actual donors. The costs attributed to organ shortage are substantial – Medicare paid over

Personalized Disclosure by Information-on-Demand: Attending to Patients’ Needs in the Informed Consent Process

15.5 billion in 2002 for treating patients with end-stage renal-disease, who predominate on organ waiting lists.

Making the case for directed organ donation to registered donors in Israel

Obtaining informed consent has typically become a stylized ritual of presenting and signing a form, in which physicians are acting defensively and patients lack control over the content and flow of information. This leaves patients at risk both for being under-informed relative to their decisional needs and of receiving more information than they need or desire. By personalizing the process of seeking and receiving information and allowing patients to specify their desire for information in a prospective manner, we aim to shift genuine control over the informational process to patients. A new paradigm of Information on Demand, such as we suggest, would also enhance legal certainty, achieve greater congruence between the information patients want and the information they receive, and promote more meaningful patient-physician interactions, a desirable outcome that has been difficult to achieve by other means.

Telemedicine: Licensing and Other Legal Issues

BackgroundThe number of deceased donor organ donations in Israel is lower than average when compared to other Western World countries. To address the organ gap, the 2008 Organ Transplantation Law provides new interventions, including important incentives to donors (and their families). The most notable of these was granting priority to registered donors (i.e., people on the waiting list who signed a donor card). The current study presents the normative arguments as well as the first documentation of public attitudes in Israel towards another possible incentive – allowing individuals to influence the allocation of their organs by permitting them to designate, to direct their donated organs [DD] to other registered donors, instead of the current allocation based primarily on medical criteria.MethodsA structured phone survey of 695 Israelis was conducted during Feb-March 2012. The sample is representative of the Israeli society in terms of age mix and gender, with adequate representation of the Arab and ultra-orthodox Jewish subgroups.ResultsAmong all Israelis, 68% stated a willingness to donate their organs, but only 16% reported to have already signed a donor card. 85% stated their interest in receiving an organ if the need arises. Overall, 64% of respondents felt that DD to a group of others who have registered as donors is justified, and the rate was remarkably higher in the Arab group (84%), and lower in the religious and ultraorthodox Jewish groups (52% and 50% respectively).ConclusionsThe majority of the Israeli public supports organ donation and its proven benefits. Thus, organ recovery policy should be grounded in a strong communitarian strategy as we all stand to benefit from cooperation. However, current legislation and practices are modeled on individual disposition based on an opt-in legal framework. DD allows personal choices of to-be donors that might interfere with social interests, principles, and values such as equal access to care (i.e. organs) or justice. However, based on the result of this survey, the conceptual case of DD to other registered donors should be viewed more favorably (while the details should be addressed in future analyses), as DD is not expected to be rejected by the public at the outset. From a normative perspective, it is possible to support an allocation scheme that allows DD to other registered donors, where individual preferences that promote just sharing of the burden (donating organs) as well as the benefits (receiving an organ) of transplantation medicine are respected. Yet, DD to other registered donors should be understood and portrayed as a transition step towards a more communitarian model, and as a signal of solidarity by sharing organs as a public good rather than as an exercise of a quasi-property right.

Predicting the decisions of hospital based child protection teams to report to child protective services, police and community welfare services

The growth of information technology and telecommunications has created promising opportunities for better, faster, more accessible, barrier-free health care; telemedicine (TM). The feasibility of many TM projects depends on resolving legal issues. Mastering technical issues or providing training remain important benchmarks for implementation of TM, but legal issues constrain progress. This article identifies the key legal issues, maps current legislation, and offers a forecast of necessary steps to expedite the dissemination of TM.

Reflections on Fairness in UNOS Allocation Policies

This study examines judgments made by hospital-based child protection teams (CPTs) when determining if there is reasonable suspicion that a child has been maltreated, and whether to report the case to a community welfare agency, to child protective services (CPS) and/or to the police. A prospective multi-center study of all 968 consecutive cases referred to CPTs during 2010-2011 in six medical centers in Israel. Centers were purposefully selected to represent the heterogeneity of medical centers in Israel in terms of size, geographical location and population characteristics. A structured questionnaire was designed to capture relevant information and judgments on each child referred to the team. Bivariate associations and multivariate multinomial logistic regressions were conducted to predict whether the decisions would be (a) to close the case, (b) to refer the case to community welfare services, or (c) to report it to CPS and/or the police. Bivariate and multivariate analyses identified a large number of case characteristics associated with higher probability of reporting to CPS/police or of referral to community welfare services. Case characteristics associated with the decisions include socio-demographic (e.g., ethnicity and financial status), parental functioning (e.g., mental health), previous contacts with authorities and hospital, current referral characteristics (e.g., parental referral vs. child referral), physical findings, and suspicious behaviors of child and parent. Most of the findings suggest that decisions of CPTs are based on indices that have strong support in the professional literature. Existing heterogeneity between cases, practitioners and medical centers had an impact on the overall predictability of the decision to report. Attending to collaboration between hospitals and community agencies is suggested to support learning and quality improvement.

Medical Information Exchange: Pattern of Global Mobile Messenger Usage among Otolaryngologists.

Periodic examination of UNOS’s policies is a useful feature of an ongoing effort to assure just and equitable allocation of lifesaving organs and to avoid potential exploitation by individuals. Yet, those whom the authors seek to protect - the majority of patients on the waiting lists and fortunate recipients - are in a morally awkward position because they have not indicated their willingness to donate organs prior to their ailments. Our comment explores this issue.

On the verge of shared decision making in Israel: Overview and future directions

Objective Information technology has revolutionized health care. However, the development of dedicated mobile health software has been lagging, leading to the use of general mobile applications to fill in the void. The use of such applications has several legal, ethical, and regulatory implications. We examined the experience and practices governing the usage of a global mobile messenger application (WhatsApp) for mobile health purposes in a national cohort of practicing otolaryngologists in Israel, a known early adaptor information technology society. Methods Cross-sectional data were collected from practicing otolaryngologists and otolaryngology residents via self-administered questionnaire. The questionnaire was composed of a demographic section, a section surveying the practices of mobile application use, mobile health application use, and knowledge regarding institutional policies governing the transmission of medical data. Results The sample included 22 otolaryngology residents and 47 practicing otolaryngologists. Of the physicians, 83% worked in academic centers, and 88% and 40% of the physicians who worked in a hospital setting or a community clinic used WhatsApp for medical use, respectively. Working with residents increased the medical usage of WhatsApp from 50% to 91% (P = .006). Finally, 72% were unfamiliar with any institutional policy regarding the transfer of medical information by personal smartphones. Discussion Mobile health is becoming an integral part of modern medical systems, improving accessibility, efficiency, and possibly quality of medical care. Implications for Practice The need to incorporate personal mobile devices in the overall information technology standards, guidelines, and regulation is becoming more acute. Nonetheless, practices must be properly instituted to prevent unwanted consequences.