Alterations and Preservations: Practices and Perspectives of Speech-Language Pathologists Regarding the Intervention of Thickened Liquids for Swallowing Problems.

Purpose: The intervention of thickened liquids (TL) is commonly used to reduce aspiration in people with dysphagia. Speech-language pathologists (SLPs) have traditionally believed it is an effective intervention. Recent articles highlight limited evidence, poor acceptance, and a variety of unintended consequences.

Perceived Value of Prenatal Ultrasound Screening: A Survey of Pregnant Women.

Introduction: Routine prenatal screening ultrasounds primarily serve to diagnose major fetal anomalies which may prompt further testing and inform clinical decision-making, including possible pregnancy termination. Meanwhile, expectant parents may view the ultrasound experience and information gained differently from their clinicians. In this setting, how to best counsel patients, especially regarding the increasing findings of indeterminant clinical significance, is unclear.

Respect, justice and learning are limited when patients are deidentified data subjects.

Introduction: Critical for advancing a Learning Health System (LHS) in the U.S., a regulatory safe harbor for deidentified data reduces barriers to learning from care at scale while minimizing privacy risks.

Nonfungible Tokens as a Blockchain Solution to Ethical Challenges for the Secondary Use of Biospecimens: Viewpoint.

Henrietta Lacks' deidentified tissue became HeLa cells (the paradigmatic learning health platform). In this article, we discuss separating research on Ms Lacks' tissue from obligations to promote respect, beneficence, and justice for her as a patient. This case illuminates ethical challenges for the secondary use of biospecimens, which persist in contemporary learning health systems.

Commentary: Special Issue on Conscientious Objection.

This special issue of HEC Forum includes articles on a wide range of specific topics that make significant contributions to conscientious objection scholarship. In this commentary, it is not feasible to provide a comprehensive analysis of each of the articles; and I have not attempted to do so. Instead, for each article, I have selected specific issues and arguments on which to comment.

Ethical Considerations in Communicating Alzheimer's Disease Neuroimaging Biomarker Test Results to Symptomatic Individuals.

This article examines ethical issues associated with the return of AD neuroimaging results to cognitively symptomatic individuals. Following a review of research on patient and study partner reactions to learning the results of biomarker testing for AD, we examine ethical issues that will be of increasing significance as the field transitions to an era wherein disease-modifying treatments for AD become available. We first review the ethical justification for returning AD biomarker results to individuals who desire them.

The Importance of Ascertaining Participant Preferences: The Importance of What Is Important.

Rosalie Kane made major contributions to research on ascertaining personal preferences. Her work influenced others and was part of a growing movement to place high priority on the voice and subjective experience of people who live with Long-Term Services and Supports (LTSS). This essay summarizes some highlights of Rosalie's research, and traces the idea of incorporating participant preferences through different programs, policies and measurement tools over the past three decades.

"Give them the door but don't push them through it": Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine.

Little is known about pediatric caregivers' perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services.

Preventing conscientious objection in medicine from running amok: a defense of reasonable accommodation.

A US Department of Health and Human Services Final Rule, Protecting Statutory Conscience Rights in Health Care (2019), and a proposed bill in the British House of Lords, the Conscientious Objection (Medical Activities) Bill (2017), may well warrant a concern that-to borrow a phrase Daniel Callahan applied to self-determination-conscientious objection in health care has "run amok." Insofar as there are no significant constraints or limitations on accommodation, both rules endorse an approach that is aptly designated "conscience absolutism." There are two common strategies to counter conscience absolutism and prevent conscientious objection in medicine from running amok.

Why Quality-of-Life Data Collection and Use Should Be Standardized When Evaluating Candidates for Hand Transplantation.

This article argues for 3 mutually reinforcing interventions in the field of hand transplantation (HTx): (1) collection of qualitative data about hand transplant recipients' subjective quality of life (QoL) outcomes, (2) multicenter standardization of data collection, and (3) use of data to develop evidence-based, standardized protocols for HTx candidate evaluation and information disclosure. These interventions are needed to improve candidate evaluation and informed consent processes in HTx, wherein the highly personal nature of desired outcomes justifies holding a candidate's consent to a standard approaching authenticity rather than the usual minimal standard of being informed and voluntary.

A qualitative study of Institutional Ethics Committees: Members' understanding of research guidelines, privacy, and challenges to privacy protection.

Right to privacy of health-related information is a foundational bioethical principle. In India, the importance of protecting privacy is included in law and ethical guidelines. Institutional Ethics Committees (IECs) are entrusted with the responsibility of protecting fundamental ethical principles, including privacy and confidentiality.

How Should Clinicians Respond to Requests from Patients to Participate in Prayer?

Over the past 20 years, physicians have shifted from viewing a patient's request for prayer as a violation of professional boundaries to a question deserving nuanced understanding of the patient's needs and the clinician's boundaries. In this case, Mrs. C's request for prayer can reflect religious distress, anxiety about her clinical circumstances, or a desire to better connect with her physician.

How do clinicians prepare family members for the role of surrogate decision-maker?

Purpose: Although surrogate decision-making (SDM) is prevalent in intensive care units (ICUs) and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate.

Subjects And Methods: We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death.

E-health beyond technology: analyzing the paradigm shift that lies beneath.

Information and computer technology has come to play an increasingly important role in medicine, to the extent that e-health has been described as a disruptive innovation or revolution in healthcare. The attention is very much focused on the technology itself, and advances that have been made in genetics and biology. This leads to the question: What is changing in medicine today concerning e-health? To what degree could these changes be characterized as a 'revolution'? We will apply the work of Thomas Kuhn, Larry Laudan, Michel Foucault and other philosophers-which offers an alternative understanding of progress and revolution in medicine to the classic discovery-oriented approach-to our analysis.

Protocol of the KTFT-TALK study to reduce racial disparities in kidney transplant evaluation and living donor kidney transplantation.

Living donor kidney transplantation (LDKT) is the optimal treatment for end-stage kidney disease (ESKD). The evaluation process for a kidney transplant is complex, time consuming, and burdensome to the ESKD patient. Also, race disparities exist in rates of transplant evaluation completion, transplantation, and LDKT.

Has the Department of Veterans Affairs Found a Way to Avoid Racial Disparities in the Evaluation Process for Kidney Transplantation?

Background: Minority groups are affected by significant disparities in kidney transplantation (KT) in Veterans Affairs (VA) and non-VA transplant centers. However, prior VA studies have been limited to retrospective, secondary database analyses that focused on multiple stages of the KT process simultaneously. Our goal was to determine whether disparities during the evaluation period for KT exist in the VA as has been found in non-VA settings.

Individual Responsibility for Promoting Global Health: The Case for a New Kind of Socially Conscious Consumption.

The problems of global health are truly terrible. Millions suffer and die from diseases like tuberculosis, HIV/AIDS, and malaria. One way of addressing these problems is via a Global Health Impact labeling campaign (http://global-health-impact.

Intensivist-reported Facilitators and Barriers to Discussing Post-Discharge Outcomes with Intensive Care Unit Surrogates. A Qualitative Study.

Rationale: Intensive care unit (ICU) patients' expected post-discharge outcomes are rarely discussed in family meetings despite this information being centrally important to patients and their families.

Objectives: To characterize intensivist-identified barriers and facilitators to discussing post-discharge outcomes with surrogates of ICU patients.

Methods: Qualitative study conducted via one-on-one, semistructured telephone interviews with 23 intensivists from 20 hospitals with accreditation council for graduate medical education-accredited critical care medicine programs in 16 states.

Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease.

Purpose: There is a paucity of scalable advance care planning strategies that achieve the diverse goals of patients, families, and clinicians. We convened key stakeholders to gain their perspectives on developing a Web-based advance care planning tool for lung disease.

Materials And Methods: We conducted semistructured interviews with 50 stakeholders: 21 patients with lung disease, 18 surrogates, and 11 clinicians.

Variations Among Medicare Beneficiaries Living in Different Settings: Demographics, Health Status, and Service Use.

Older people with complex health issues and needs for functional support are increasingly living in different types of residential care environments as alternatives to nursing homes. This study aims to compare the demographics and health-care expenditures of Medicare beneficiaries by the setting in which they live: nursing homes, residential care settings, and at home using data from the 2002 to 2010 Medicare Current Beneficiary Study (MCBS), a nationally representative survey of the Medicare population. All Medicare beneficiaries aged 65 years or older who participated in the fall MCBS interview (years 2002-2010) and were alive for the full year (N = 83,507) were included in the sample.

Prior Advance Care Planning Is Associated with Less Decisional Conflict among Surrogates for Critically Ill Patients.

Rationale: Although numerous studies have documented that family members in intensive care units struggle with end-of-life decisions for incapacitated patients, there is little information about whether prior advance care planning lessens the burden of decision making.

Objectives: We sought to measure decisional conflict in surrogates of critically ill patients and to examine whether prior advance care planning is associated with less decisional conflict.

Methods: We performed a secondary data analysis of a multicenter, prospective cohort study done at five U.