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As climate change progresses, we humans might have to inhabit a world for which we are increasingly maladapted. If we were able to identify genes that directly influence our ability to thrive in a changing climate, would it be ethically justifiable to edit the human genome to enhance our ability to adapt to this new environment? Should we use gene editing not only to prevent significant disease but also to enhance our ability to function in the world? Here I suggest a "4-S framework" for analyzing the justifiability of gene editing that includes these considerations: (1) safety, (2) significance of harm to be averted, (3) succeeding generations, and (4) social consequences. [ABSTRACT FROM AUTHOR]

Background: Financial ties between physicians and the pharmaceutical and medical device industry are common, but little is known about how patient trust is affected by these ties.Objective: The purpose of this study was to evaluate how viewing online public disclosure of industry payments affects patients' trust ratings for physicians, the medical profession, and the pharmaceutical and medical device industry.Design: This was a randomized experimental evaluation.Participants: There were 278 English-speaking participants over age 18 who had seen a healthcare provider in the previous 12 months who took part in the study.Interventions: Participants searched for physicians on an online disclosure database, viewed payments from industry to the physicians, and assigned trust ratings. Participants were randomized to view physicians who received no payment ($0), low payment ($250-300), or high payment (>$13,000) from industry, or to a control arm in which they did not view the disclosure website. They also were asked to search for and then rate trust in their own physician.Main Measures: Primary outcomes were trust in individual physician, medical profession, and industry. These scales measure trust as a composite of honesty, fidelity, competence, and global trust.Key Results: Compared to physicians who received no payments, physicians who received payments over $13,000 received lower ratings for honesty [mean (SD): 3.36 (0.86) vs. 2.75 (0.95), p < 0.001] and fidelity [3.19 (0.65) vs. 2.89 (0.68), p = 0.01]. Among the 7.9% of participants who found their own physician on the website, ratings for honesty and fidelity decreased as the industry payment to the physician increased (honesty: Spearman's ρ = -0.52, p = 0.02; fidelity: Spearman's ρ = -0.55, p = 0.01). Viewing the disclosure website did not affect trust ratings for the medical profession or industry.Conclusions: Disclosure of industry payments to physicians affected perceptions of individual physician honesty and fidelity, but not perceptions of competence. Disclosure did not affect trust ratings for the medical profession or the pharmaceutical and medical device industry. ClinicalTrials.gov identifier: NCT02179632 ( https://clinicaltrials.gov/ct2/show/NCT02179632 ). [ABSTRACT FROM AUTHOR]

This American College of Physicians position paper aims to inform ethical decision making for the integration of precision medicine and genetic testing into clinical care. Although the positions are primarily intended for practicing physicians, they may apply to other health care professionals and can also inform how health care systems, professional schools, and residency programs integrate genomics into educational and clinical settings. Addressing the challenges of precision medicine and genetic testing will guide ethical and responsible implementation to improve health outcomes. [ABSTRACT FROM AUTHOR]

Objective: There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney.Method: A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion.Results: Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place.Significance Of Results: Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill. [ABSTRACT FROM AUTHOR]

Aim: To evaluate patients' expectations regarding the perceived utility of whole-genome sequencing (WGS). Materials & methods: We used latent class analysis to characterize individuals enrolled in the MedSeq Project based on their perceived utility of WGS. Multinomial logistic regression was used to evaluate associations between participant characteristics and latent classes. Results: Findings characterized participants into one of three perceived utility groups: enthusiasts, who had a high probability of agreement with all utility items (23%); health conscious, who perceived utility in medically related areas (60%) or skeptics, who had a low probability of agreement with utility items (17%). Trust significantly predicted latent class. Conclusion: Understanding differences in perceived utility of WGS may inform strategies for uptake of this technology. [ABSTRACT FROM AUTHOR]

Purpose: National reports on end-of-life symptom management reveal a gap in the evidence regarding symptoms other than pain and studies of diseases other than cancer. This study examines the frequency and severity of symptoms and quality of life (QOL) in persons with advanced cancer, amyotrophic lateral sclerosis (ALS), and congestive heart failure (CHF). Methods: The present study is a cross-sectional examination of symptoms and QOL measured using the McGill QOL Questionnaire, among 147 participants. Results: Forty one percent of participants had advanced cancer, 22% had ALS, and 37% had advanced CHF. A total of 266 symptoms were reported, with the common symptom categories being discomfort/pain, weakness/fatigue/sleep, and respiratory. Participants with CHF had the highest mean symptom severity and the lowest QOL. Conclusion: Clinicians should be aware and attentive for symptoms other than pain in patients with advanced illness. Studies on diseases other than cancer, such as CHF and ALS, are important to improve symptom management in all disease groups. [ABSTRACT FROM AUTHOR]

One might have thought that medical education would equip physicians with the knowledge to treat disease as well as training in the art of comforting the dying. In Final exam: [...]

Background: Whole genome sequencing (WGS) is already being used in certain clinical and research settings, but its impact on patient well-being, health-care utilization, and clinical decision-making remains largely unstudied. It is also unknown how best to communicate sequencing results to physicians and patients to improve health. We describe the design of the MedSeq Project: the first randomized trials of WGS in clinical care. Methods/Design: This pair of randomized controlled trials compares WGS to standard of care in two clinical contexts: (a) disease-specific genomic medicine in a cardiomyopathy clinic and (b) general genomic medicine in primary care. We are recruiting 8 to 12 cardiologists, 8 to 12 primary care physicians, and approximately 200 of their patients. Patient participants in both the cardiology and primary care trials are randomly assigned to receive a family history assessment with or without WGS. Our laboratory delivers a genome report to physician participants that balances the needs to enhance understandability of genomic information and to convey its complexity. We provide an educational curriculum for physician participants and offer them a hotline to genetics professionals for guidance in interpreting and managing their patients' genome reports. Using varied data sources, including surveys, semi-structured interviews, and review of clinical data, we measure the attitudes, behaviors and outcomes of physician and patient participants at multiple time points before and after the disclosure of these results. Discussion: The impact of emerging sequencing technologies on patient care is unclear. We have designed a process of interpreting WGS results and delivering them to physicians in a way that anticipates how we envision genomic medicine will evolve in the near future. That is, our WGS report provides clinically relevant information while communicating the complexity and uncertainty of WGS results to physicians and, through physicians, to their patients. This project will not only illuminate the impact of integrating genomic medicine into the clinical care of patients but also inform the design of future studies. [ABSTRACT FROM AUTHOR]

The article presents speeches by Lisa Lehmann, Katherine Swartz, Michael Chin and Marcia Angell, delivered at the Harvard Medical School Public Forum on May 17, 2007, in which they discussed and critically examined the Massachusetts healthcare legislation, whether the reform should be comprehensive or incremental and should priority be given to reforming the financing system or improving the organization and delivery of healthcare.

Objectives: For decades, researchers in anthropology and archaeology have used teeth, including exfoliated primary teeth, as fossil records of people's physical life experiences. Recently, researchers in psychiatry, epidemiology, environmental health and other fields have recognized the potential for teeth to serve as biomarkers of other early‐life experiences, including trauma exposure and other types of psychosocial stress, which are potent determinants of later mental and physical health problems. Despite the emerging appreciation and value of teeth as biospecimens, little is understood about cultural beliefs and practices surrounding exfoliated teeth. If known, such insights could inform culturally appropriate practices for paediatric dental care and improve protocols for the ethical acquisition of teeth as biospecimens in research studies. To address this gap, a qualitative systematic review was performed to summarize the variety of traditions performed worldwide for disposing of primary exfoliated teeth. Methods: PubMed, Google Scholar, AnthroSource, Anthropological Literature, EHRAF World Cultures and Anthropology Plus were searched with a systematic search strategy to identify articles published from inception through December 2, 2021. Citations of relevant papers were also forward and backward searched. Results: There were 3289 articles that met the initial inclusion criteria, of which 37 were included after individual screening and applying exclusion criteria. Thematic analysis was used to identify 74 distinct traditions related to the disposal of exfoliated teeth, which were organized into seven general themes: (1) giving teeth to a tooth fairy, (2) giving teeth to mouse figures, (3) throwing teeth, (4) hiding/keeping teeth, (5) burying teeth, (6) giving teeth to animals and (7) eating the tooth. Conclusions: The results of this study elucidate the diversity within—yet universality of—exfoliated tooth disposal traditions and underscore the importance of tooth exfoliation as a major milestone during child development. Special attention must be paid to these traditions and related ethical concerns when designing research protocols related to their collection. With a greater understanding of beliefs and practices related to exfoliated teeth, researchers will be better equipped to engage children and families in studies that include analyses of exfoliated teeth, collect teeth as biospecimens, and broaden the use of teeth in research. [ABSTRACT FROM AUTHOR]

This study examines the distribution of payments within and across specialties and the medical products associated with the largest total payments. [ABSTRACT FROM AUTHOR]

Background: The Department of Veterans Affairs (VA) healthcare system routinely screens Veterans for food insecurity, housing instability, and intimate partner violence, but does not systematically screen for other health-related social needs (HRSNs). Objectives: To (1) develop a process for systematically identifying and addressing Veterans' HRSNs, (2) determine reported prevalence of HRSNs, and (3) assess the acceptability of HRSN screening among Veterans. Design: "Assessing Circumstances and Offering Resources for Needs" (ACORN) is a Veteran-tailored HRSN screening and referral quality improvement initiative. Veterans were screened via electronic tablet for nine HRSNs (food, housing, utilities, transportation, legal needs, social isolation, interpersonal violence, employment, and education) and provided geographically tailored resource guides for identified needs. Two-week follow-up interviews with a purposive sample of Veterans explored screening experiences. Participants: Convenience sample of Veterans presenting for primary care at a VA urban women's health clinic and suburban community-based outpatient clinic (October 2019–May 2020). Main Measures: Primary outcomes included prevalence of HRSNs, Veteran-reported acceptability of screening, and use of resources guides. Data were analyzed using descriptive statistics, chi-square tests, and rapid qualitative analysis. Key Results: Of 268 Veterans screened, 50% reported one or more HRSNs. Social isolation was endorsed most frequently (29%), followed by educational needs (19%), interpersonal violence (12%), housing instability (9%), and utility concerns (7%). One in five Veterans reported at least one form of material hardship. In follow-up interviews (n = 15), Veterans found screening acceptable and felt VA should continue screening. No Veterans interviewed had contacted recommended resources at two-week follow-up, although several planned to use resource guides in the future. Conclusion: In a VA HRSN screening and referral program, Veterans frequently reported HRSNs, felt screening was important, and thought VA should continue to screen for these needs. Screening for HRSNs is a critical step towards connecting patients with services, identifying gaps in service delivery, and informing future resource allocation. [ABSTRACT FROM AUTHOR]

METHODS We used Google's COVID-19 Vaccination Access dataset, powered by Google Maps Directions API, which identified "vaccine deserts" as areas within which a known vaccination site could not be reached within a 15-min drive.[5] All currently known vaccination sites were identified by VaccineFinder, a web-based tool containing all known vaccine providers, and Google data. B Bivariate choropleth map showing concentration of places of worship within vaccine deserts compared to healthcare sites within vaccine deserts. [Extracted from the article]

Goals-of-care conversations (GoCCs) to elicit patients' values regarding end-of-life care, including life-sustaining treatment, are a hallmark of high-quality, patient-centered care.[1] Ideally, GoCCs are proactive, held in outpatient settings before clinical deterioration; unfortunately, patients' first GoCCs are often delayed until hospitalization ("just-in-time").[1] The COVID-19 pandemic heightened the importance of proactive GoCCs, which can improve both patient-centered and population-level outcomes when life-sustaining treatment resources may be limited.[1]-[3] It is unknown whether hospitals effectively and rapidly mobilized resources in response to calls to increase proactive GoCCs,[2], [3] or if they struggled to do so amidst competing demands during early COVID surges. We calculated rate ratios (COVID versus pre-COVID) and used single-variable linear regression models to assess associations between facility-level characteristics and rate ratios. No facility-level characteristics were significantly associated with change from pre-COVID to COVID documented GoCC rates. [Extracted from the article]

Context: The Veterans Health Administration (VA) National Center for Ethics in Healthcare implemented the Life-Sustaining Treatment Decisions Initiative, including policy and practice standards, clinician communication training, a documentation template, and central implementation support to foster advance care planning via goals-of-care conversations for seriously ill veterans in 2014, spreading nationally to other Veterans Health Affairs (VA) sites in 2017.Objectives: Our goal was to describe the range of early implementation experiences among the pilot sites, and compare them with spread sites that implemented LSTDI about two years later, identifying cross-site best practices and pitfalls.Methods: We conducted semistructured interviews with 32 key stakeholders from 12 sites to identify cross-site best practices and pitfalls related to implementation.Results: Three primary implementation themes emerged: organizational readiness for transformation, importance of champions, and time and resources needed to achieve implementation. Each theme's barriers and facilitators highlighted variability in success based on complexity in terms of vertical hierarchy and horizontal cross-role/cross-clinic relationships.Conclusion: Learning health care systems need multilevel interdisciplinary implementation approaches to support communication about serious illness, from broad-based system-level training and education to build communication skills, to focusing on characteristics of successful individual champions who listen to critics and are tenacious in addressing concerns. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to the article "Redefining physicians' role in assisted dying," by J. J. Z. Prokopetz and L. S. Lehmann in the 2012 issue.

The care of Very Important Patients (VIPs) is different from other patients because they may receive greater access, attention, and resources from health care staff. Although the term VIP is used regularly in the medical literature and is implicitly understood, in practice it constitutes a wide and heterogeneous group of patients that have a strong effect on health care providers. We define a VIP as a very influential patient whose individual attributes and characteristics (eg, social status, occupation, position), coupled with their behavior, have the potential to significantly influence a clinician's judgment or behavior. Physicians, celebrities, the politically powerful, and philanthropists, may all become VIPs in the appropriate context. The quality of care may be inferior because health care professionals may deviate from standard practices when caring for them. Understanding the common features among what may otherwise be very different groups of patients can help health care providers manage ethical concerns when they arise. We use a series of vignettes to demonstrate how VIPs behavior and status can influence a clinician's judgment or actions. Appreciating the ethical principles in these varied circumstances provides health care professionals with the tools to manage ethical conflicts that arise in the care of VIPs. We conclude each vignette with guidance for how health care providers and administrators can manage the ethical concern. [ABSTRACT FROM AUTHOR]

Background: Health care organizations, including the Veterans Health Administration (VHA), are increasingly adopting programs to address social determinants of health. As part of a comprehensive social risk screening and referral model, tailored resource guides can support efforts to address unmet social needs. However, limited guidance is available on best practices for the development of resource guides in health care settings., Observations: This article describes the development of geographically tailored resource guides for a national VHA quality improvement initiative, Assessing Circumstances and Offering Resources for Needs (ACORN), which aims to systematically screen for and address social needs among veterans. We outline the rationale for using resource guides as a social needs intervention and provide a pragmatic framework for resource guide development and maintenance. We offer guidance based on lessons learned from the development of ACORN resource guides, emphasizing a collaborative approach with VHA social workers and other frontline clinical staff, as well as with community-based organizations. Our how-to guide provides steps for identifying high-yield resources along with formatting considerations to maximize accessibility and usability among patients., Conclusions: Resource guides can serve as a valuable cross-cutting component of health care organizations' efforts to address social needs. We provide a practical approach to resource guide development that may support successful implementation within the VHA and other clinical settings., Competing Interests: Author disclosures: The authors report no actual or potential conflicts of interest or outside sources of funding with regard to this article., (Copyright © 2024 Frontline Medical Communications Inc., Parsippany, NJ, USA.)

With abortion remaining legal in over half of the country and a proliferation of websites offering information on how to access abortion medications, for those who know where to look, there are sound options for safely ending an unwanted early-stage pregnancy. But not all patients have equal access to reliable information. This Article addresses the urgent downstream harms caused by the lack of access to abortion information, and argues that in view of these consequences, regardless of abortion's legal status, clinicians have a duty to provide their patients with abortion information. We begin by documenting clinicians' hesitation to share abortion information, drawing on our interviews with 25 doctors practicing medicine in a state where abortion is criminalized. Next, we explain why clinicians are duty-bound to provide all-options counseling. We then consider whether such duties shift where abortion is criminalized. After identifying the limited legal risks associated with supplying abortion information, and showing how, by requiring all-options counseling, professional societies might reduce risks to patients and clinicians, we conclude that, regardless of the legal status of abortion, clinicians have a professional responsibility to share basic abortion information - including treatment options and how to access those options., (© The Author(s) 2023. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School.)

Background: Patient engagement is recognized as a method to improve care quality and safety. A research team developed WeCares (Willingness to Engage in Your Care and Safety), a survey instrument assessing patients' and families' engagement in the safety of their care during their hospital stay. The objective of this study is to establish the preliminary construct validity and internal consistency of WeCares., Methods: WeCares was distributed to patients and families. With the survey responses, exploratory factor analysis (EFA) was performed to identify the factorial structure of WeCares. The internal consistency was assessed using Cronbach's alpha. Descriptive and comparative analysis was also performed to summarize patients' and families' responses., Results: A total of 247 patients and families responded to the WeCare survey, of which 224 were used for EFA. EFA resulted in a 13-item, four-factor structure, including (1) comfortable sharing concerns, (2) responsibility for preventing errors, (3) perception of care team members' attitude, and (4) patients'/families' role in preventing errors. The Cronbach alphas were 0.716-0.866, indicating acceptable internal consistency. Overall, patients and families were comfortable sharing concerns with clinicians but preferred to remain anonymous. They believed that the care team members hold most responsibility for error prevention, however, and agreed on their ability to help prevent errors., Conclusion: WeCares was developed to assess patients' and families' willingness to engage. WeCares can also be used to facilitate conversation about safety concerns and shared responsibility. The study team believes this would lead to patient activation in guarding their own care and ultimately improve patient outcomes and safety., (Copyright © 2020 The Joint Commission. All rights reserved.)

Health care systems can go beyond advance care planning to create mechanisms for eliciting and documenting the goals of care and life-sustaining treatment decisions of patients with serious life-limiting illnesses. These systems can help ensure that patients receive care that is consistent with their values and preferences. We describe a case in which even though a patient with a serious illness had completed an advance directive and had discussed preferences with family, clinicians failed to identify the patient's authentic preferences for life-sustaining treatment. We offer a stepwise framework for communication with seriously ill patients and describe a systems approach to transforming the process of eliciting, documenting, and honoring patients' life-sustaining treatment preferences in the U. S. Veterans Health Administration.

Women physicians are paid less than their male peers across medical specialties and geographies. While the medical literature to date has focused on documenting the existence of a wage gap, less attention has been paid to fixing this gap. We focus on interventions around auditing, salary transparency, family leave, and childcare that can be implemented to advance gender wage parity.

Background: Conferences, processes, and/or meetings in which adverse events and near misses are reviewed within clinical programs at a single academic medical center were identified., Methods: Leaders of conferences, processes, or meetings-"process leaders"-in which adverse events and near misses were reviewed were surveyed., Results: On the basis of responses from all 45 process leaders, processes were classified into (1) Morbidity and Mortality Conferences (MMCs), (2) Quality Assurance (QA) Meetings, and (3) Educational Conferences. Some 22% of the clinical programs used more than one of these three processes to identify and review adverse events and near misses, while 10% had no consistent participation in any of them. Explicit criteria for identifying and selecting cases to be reviewed were used by 58% of MMCs and 69% of QA Meetings. The explicit criteria used by MMCs and QA Meetings varied widely. Many MMCs (54%, 13/24), QA Meetings (54%, 7/13), and Educational Conferences (70%, 7/10) did not review all the adverse events or near misses that were identified, and several MMCs (46%, 6/13), QA Meetings (29%, 2/7), and Educational Conferences (57%, 4/7) had no other process within their clinical program by which to review these remaining cases., Conclusions: There was wide variation regarding how clinical programs identify and review adverse events and near misses within the MMCs, QA Meetings, and Educational Conferences, and some programs had no such processes. A well-designed, coordinated process across all clinical areas that incorporates accepted approaches for event analysis may improve the quality and safety of patient care., (Copyright © 2016 The Joint Commission. All rights reserved.)

Background: In recent years there have been significant advances in the process of oocyte cryopreservation. Advanced techniques including vitrification have seen increasing success rates of fertilization. These successes warrant renewed public consideration and debate on several issues: In what circumstances? Who should pay? How should the process be regulated?, Study Question: Our goals were to examine the approach to oocyte cryopreservation amongst attending in-vitro fertilization (IVF) physicians and amongst researchers in the field of bioethics and health regulation., Methods: Questionnaires regarding egg freezing were given to physicians heading IVF departments in Israel, and to bioethics researchers / health care administrators., Results: Among the two groups questioned, there is strong support (80%) for the freezing of oocytes for personal circumstances, which may not be purely medical. Despite this support, there appears to be a difference in reasoning for this support. While most physicians see no reason to inhibit using the technology, bioethicists attend to the conflict between personal liberties and potentially troubling ethical consequences on society when utilizing these technologies. There is an additional discrepancy between the groups concerning regulation. Physicians prefer regulation by administrative means, while bioethicists would prefer regulation by Laws., Conclusions: Despite widespread support of oocyte cryopreservation for personal reasons among the two groups questioned, their views arise from different rationales. implementation of egg freezing technologies requires careful interdisciplinary discussion in order to consider the various medical, ethical, and sociological factors that these technologies will incur.