Mobile Health Apps, Family Caregivers, and Care Planning: Scoping Review.

BACKGROUND: People living with multiple chronic conditions (MCCs) face substantial challenges in planning and coordinating increasingly complex care. Family caregivers provide important assistance for people with MCCs but lack sufficient support. Caregiver apps have the potential to help by enhancing care coordination and planning among the health care team, including patients, caregivers, and clinicians. OBJECTIVE: We aim to conduct a scoping review to assess the evidence on the development and use of caregiver apps that support care planning and coordination, as well as to identify key factors (ie, needs, barriers, and facilitators) related to their use and desired caregiver app functionalities. METHODS: Papers intersecting 2 major domains, mobile health (mHealth) apps and caregivers, that were in English and published from 2015 to 2021 were included in the initial search from 6 databases and gray literature and ancestry searches. As per JBI (Joanna Briggs Institute) Scoping Review guidelines and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews), 2 authors independently screened full texts with disagreements resolved by a third author. Working in pairs, the authors extracted data using a pilot-tested JBI extraction table and compared results for consensus. RESULTS: We identified 34 papers representing 25 individual studies, including 18 (53%) pilot and feasibility studies, 13 (38%) qualitative studies, and 2 experimental or quasi-experimental studies. None of the identified studies assessed an intervention of a caregiver app for care planning and coordination for people with MCCs. We identified important caregiver needs in terms of information, support, and care coordination related to both caregiving and self-care. We compiled desired functionalities and features enabling apps to meet the care planning and care coordination needs of caregivers, in particular, the integration of caregiver roles into the electronic health record. CONCLUSIONS: Caregiver needs identified through this study can inform developers and researchers in the design and implementation of mHealth apps that integrate with the electronic health record to link caregivers, patients, and clinicians to support coordinated care for people with MCCs. In addition, this study highlights the need for more rigorous research on the use of mHealth apps to support caregivers in care planning and coordination.

Imagine This: Happy Aging in America.

This essay explores what it means to age happily, beginning with concepts of aging and happiness and proceeding to factors that promote or undermine happy aging. Relationships, contribution, and personal growth all add value to an aging life. Community also matters, as does the acceptance that a happy older age requires neither perfect health nor immense wealth.

Religion, Spirituality, and Ethics in Psychiatric Practice.

ABSTRACT: The interface of religion, spirituality, and psychiatric practice has long been of interest to the ethical psychiatrist. Some prominent early psychotherapists had a strained relationship with religion and spirituality. They posited that religion and spirituality were forms of mental illness, which discouraged the discussion of these values during treatment despite the fact that many patients subscribed to a religious or spiritual viewpoint. Contrarily, others supported a harmonious relationship with religion and spirituality and served as trailblazers for the incorporation of religion and spirituality into psychiatric treatment.As the field of psychiatry continues to evolve, additional dimensions of the relationship between religion, spirituality, and psychiatric practice must be explored. Today, many modern psychiatrists appreciate the importance of incorporating religion and spirituality into treatment, but questions such as whether it is ethical to practice psychiatry from a particular religious or spiritual viewpoint or for psychiatrists to advertise that they subscribe to a particular religion or spirituality and to engage in religious or spiritual practices with their patients remain nuanced and complex. In this resource document, the authors put forth and examine the ramifications of a bio-psycho-social-religious/spiritual model for psychological development and functioning, with this fourth dimension shifting the focus from symptom reduction alone to include other aspects of human flourishing such as resilience, meaning-making, and hope.

Running Toward Disasters: One Bioethicist's Experience in Translational Ethics.

Translational ethics is a practice that aims to apply bioethics insights and process to the real-world contexts of clinical medicine, but also government policy, systems issues, and public health. This work has been a career focus for a relatively small number of bioethicists over the years, but it has drawn greater attention due to the pandemic and a greater realization of the impact of health inequities and systemic injustice. This essay discusses the pathway, rewards, and challenges of translational bioethics as experienced by one bioethicist working with state and national groups on a range of translational ethics issues, often related to public health disasters. There is much remaining work to be done, and the goal of the essay is to encourage rising bioethicists to engage in translational bioethics.

Commercial insurance delays direct-acting antiviral treatment for hepatitis C kidney transplantation into uninfected recipients.

INTRODUCTION: The advent of direct-acting antivirals (DAAs) has created an avenue for transplantation of hepatitis C virus (HCV)-infected donors into uninfected recipients (D+/R-). The donor transmission of HCV is then countered by DAA administration during the post-operative period. However, initiation of DAA treatment is ultimately dictated by insurance companies. METHODS: A retrospective chart review of 52 D+/R- kidney recipients who underwent DAA treatment post-transplant was performed. Patients were grouped according to their prescription coverage plans, managed by either commercial or government pharmacy benefit managers (PBMs). RESULTS: Thirty-nine patients had government PBMs and 13 had commercial PBMs. Demographics were similar between the two groups. All patients developed HCV viremia, but cleared the virus after treatment with DAA. Patients with government PBMs were treated earlier compared to those with commercial PBMs (11 days vs 26 days, P = .01). Longer time to DAA initiation resulted in higher peak viral loads (ß = 0.39, R2  = .15, P = .01) and longer time to HCV viral load clearance (ß = 0.41, R2  = .17, P = .01). CONCLUSIONS: D+/R- transplantation offers patients an alternative strategy to increase access. However, treatment can be profoundly delayed by a third-party payer authorization process that may be subjecting patients to unnecessary risks and worsened outcomes.

Transplantation of viral-positive hepatitis C-positive kidneys into uninfected recipients offers an opportunity to increase organ access.

The advent of direct-acting antivirals (DAAs) has provided the impetus to transplant kidneys from hepatitis C virus-positive donors into uninfected recipients (D+/R-). Thirty D+/R- patients received DAA treatment. Sustained virologic response (SVR12) was defined as an undetectable viral load in 12 weeks after treatment. An age-matched cohort of uninfected donor and recipient pairs (D-/R-) transplanted during same time period was used for comparison. The median day of viral detection was postoperative day (POD) 2. The detection of viremia in D+/R- patients was 100%. The initial median viral load was 531 copies/µL (range: 10-1 × 108 copies/µL) with a median peak viral load of 3.4 × 105 copies/µL (range: 804-1.0 × 108 copies/µL). DAAs were initiated on median POD 9 (range: 5-41 days). All 30 patients had confirmed SVR12. During a median follow-up of 10 months, patient and graft survival was 100%, and acute rejection was 6.6% with no major adverse events related to DAA treatment. Delayed graft function was significantly decreased in D+/R- patients as compared to the age-matched cohort (27% vs 60%; P = .01). D+/R- transplantation offers patients an alternative strategy to increase access.

COVID in NYC: What We Could Do Better.

New York City hospitals expanded resources to an unprecedented extent in response to the COVID pandemic. Thousands of beds, ICU beds, staff members, and ventilators were rapidly incorporated into hospital systems. Nonetheless, this historic public health disaster still created scarcities and the need for formal crisis standards of care. These were not available to NY clinicians because of the state's failure to implement, with or without revision, long-standing guidance documents intended for just such a pandemic. The authors argue that public health plans for disasters should be well-funded and based on available research and expertise. Communities should insist that political representatives demonstrate responsible leadership by implementing and updating as needed, crisis standards of care. Finally, surge requirements should address the needs of both those expected to survive and those who will not, by expanding palliative care and other resources for the dying.

An ethical analysis of medication treatment for opioid use disorder (MOUD) for persons who are incarcerated.

Opioid use disorder (OUD) is highly prevalent among persons who are incarcerated. Medication treatment for opioid use disorder (MOUD), methadone, buprenorphine, and naltrexone, is widely used to treat OUD in the community. Despite MOUD's well-documented effectiveness in improving health and social outcomes, its use in American jails and prisons is limited.Several factors are used to justify limited access to MOUD in jails and prisons including: "uncertainty" of MOUD's effectiveness during incarceration, security concerns, risk of overdose from MOUD, lack of resources and institutional infrastructure, and the inability of people with OUD to provide informed consent. Stigma regarding MOUD also likely plays a role. While these factors are relevant to the creation and implementation of addiction treatment policies in incarcerated settings, their ethicality remains underexplored.Using ethical principles of beneficence/non-maleficence, justice, and autonomy, in addition to public health ethics, we evaluate the ethicality of the above list of factors. There is a two-fold ethical imperative to provide MOUD in jails and prisons. Firstly, persons who are incarcerated have the right to evidence-based medical care for OUD. Secondly, because jails and prisons are government institutions, they have an obligation to provide that evidence-based treatment. Additionally, jails and prisons must address the systematic barriers that prevent them from fulfilling that responsibility. According to widely accepted ethical principles, strong evidence supporting the health benefits of MOUD cannot be subordinated to stigma or inaccurate assessments of security, cost, and feasibility. We conclude that making MOUD inaccessible in jails and prisons is ethically impermissible.

Health Policy and Dementia.

PURPOSE OF REVIEW: The anticipated number of persons with dementia continues to grow, and the US has insufficiently planned to provide and pay for care for this large population. RECENT FINDINGS: A number of significant clinical trials aiming to prevent or cure dementia, including Alzheimer's disease, have not demonstrated success. Because of the lack of efficacious treatments, and the fact that brain changes associated with dementia may begin decades before symptoms, we can predict that efforts to cure or prevent dementia will not succeed in time for millions of people in the baby boomer generation. Because of the anticipated increase in people suffering with dementia in the coming years, US health policy must address major gaps in how to provide and pay for dementia care. Reliance on Medicaid and Medicare as currently structured will not sustain the necessary care, nor can families alone provide all necessary dementia care. Innovative forms of providing long-term care and paying for it are crucially needed.

Legal and Ethical Concerns about Sexual Orientation Change Efforts.

The United States has recently made significant and positive civil rights gains for LGB people, including expanded recognition of marriages between people of the same sex. Among the central tropes that have emerged in the struggle for the rights of LGB people are that they are "born that way," that sexual orientations cannot change, and that one's sexual orientation is not affected by choice. Writer Andrew Sullivan put it this way: "[H]omosexuality is an essentially involuntary condition that can neither be denied nor permanently repressed.… [S]o long as homosexual adults as citizens insist on the involuntary nature of their condition, it becomes politically impossible to deny or ignore the fact of homosexuality.… [The strategy for obtaining LGB rights is to] seek full public equality for those who, through no fault of their own, happen to be homosexual." This idea of linking LGB rights to empirical claims about sexual orientations has become so central that casting doubt on these claims is, in many circles, tantamount to opposing LGB rights. Nonetheless, claims about innateness, immutability, and lack of choice about sexual orientation should not be the primary basis for LGB rights.

The Time Is Now: Bioethics and LGBT Issues.

Our goal in producing this special issue is to encourage our colleagues to incorporate topics related to LGBT populations into bioethics curricula and scholarship. Bioethics has only rarely examined the ways in which law and medicine have defined, regulated, and often oppressed sexual minorities. This is an error on the part of bioethics. Medicine and law have served in the past as society's enforcement arm toward sexual minorities, in ways that robbed many people of their dignity. We feel that bioethics has an obligation to discuss that history and to help us as a society take responsibility for it. We can address only a small number of topics in this special issue of the Hastings Center Report, and we selected topics we believe will stimulate discourse. Andrew Solomon offers an elegant overview of the challenges that bioethics faces in articulating a solid basis for LGBT rights. Timothy F. Murphy asks whether bioethics still faces issues related to lesbian, gay, and bisexual people, given the deletion of homosexuality as a disease and the progress toward same-sex marriage. Jamie Lindemann Nelson's essay addresses the search for identity for transgender persons and the role of science in that search. Two articles, those by Brendan S. Abel and by Jack Drescher and Jack Pula, take up the complex issue of medical treatment for children who reject their assigned birth gender. Celia B. Fisher and Brian Mustanski address the special challenges of engaging LGBT youth in research, balancing the need for better information about this vulnerable group against the existing restrictions on research involving children. Tia Powell and Edward Stein consider the merits of legal bans on psychotherapies intended to change sexual orientation, particularly in the light of current research on orientation. Mary Beth Foglia and Karen I. Fredricksen-Goldsen highlight health disparities and resilience among LGBT older adults and then discuss the role of nonconscious bias in perpetuating disparities. Stephan Davis and Nancy Berlinger assess the challenges of access to care and health policy for transgender persons. Edward J. Callahan et al. tackle the ways in which diverse aspects of medicine should change to better incorporate the needs of LGBT patients, including through use of the electronic medical record, education of health professionals, and recruitment efforts for LGBT health professionals. Virginia Ashby Sharpe and Uchenna S. Uchendu describe multifaceted efforts within Veterans Administration facilities to create change for LGBT veterans across the largest integrated health care network in the United States. Lance Wahlert and Autumn Fiester find a mixed record in the use of case studies in teaching about LGBT issues.

Comparative outcomes for patients who do and do not undergo percutaneous coronary intervention for stable coronary artery disease in New York.

BACKGROUND: Little is known about what treatments patients receive after being diagnosed with stable coronary artery disease or what the comparative outcomes are for routine medical treatment (RMT) versus percutaneous coronary intervention (PCI) with RMT for patients in a setting apart from randomized controlled trials. METHODS AND RESULTS: Patients with stable coronary artery disease undergoing cardiac catheterization in New York State between 2003 and 2008 were followed up to determine the treatment they received. Patients receiving RMT and patients receiving PCI with RMT were propensity matched through the use of 20 factors that could have a bearing on outcomes. The resulting cohort of 933 matched pairs was used to compare mortality/myocardial infarction (MI), mortality, MI, and subsequent revascularization rates. A total of 89% of all patients underwent PCI with RMT. PCI/RMT patients had significantly lower adverse outcome rates at 4 years for mortality/MI (16.5% versus 21.2%; P=0.003), mortality (10.2% versus 14.5%; P=0.02), MI (8.0% versus 11.3%; P=0.007), and subsequent revascularization (24.1% versus 29.1%; P=0.005). Adjusted RMT versus (PCI with RMT) hazard ratios were 1.49 (95% confidence interval, 1.16-1.93) for mortality/MI and 1.46 (95% confidence interval, 1.08-1.97) for mortality. There were no differences for patients ≤ 65 years of age or for patients with single-vessel disease. CONCLUSIONS: Most patients with stable coronary artery disease in New York undergoing catheterization between 2003 and 2008 received PCI. Patients who received PCI experienced lower mortality, mortality/MI, and revascularization rates. The reasons for this finding need to be better understood, including the possible role of low medication adherence rates that have been found in other studies.

HCEC pearls and pitfalls: suggested do's and don't's for healthcare ethics consultants.

Members of the Clinical Ethics Consultation Affairs Standing Committee of the American Society for Bioethics and Humanities present a collection of insights and recommendations developed from their collective experience, intended for those engaged in the work of healthcare ethics consultation.

Primary and Specialist-Level Palliative Care during the spring 2020 COVID-19 Surge: A Single-Center Experience in the Bronx.

INTRODUCTION: The COVID-19 pandemic surge necessitated a rapid increase in provision of goals of care communication for patients with respiratory failure and high risk of death. We aimed to describe the outcomes and incidence of code status changes for mechanically ventilated patients in an acute care hospital after deploying strategies to enhance primary palliative care, including provision of goals of care communication scripts to front-line physicians. METHODS: This is a retrospective cohort study including all patients admitted with COVID-19 disease and requiring mechanical ventilation during a 2-week period in March and April of 2020. RESULTS: Of the 440 total patients, 327 (74.3%) died. 162 patients received a documented attempt at cardiopulmonary resuscitation (CPR) and only 4 (2.5%) of them survived. No patient above the age of 64 survived a CPR attempt. On admission, 404 patients (92.8%) were Full Code. 165 patients (37.5%) had a code status change. Almost half of the patients (n = 219) had a palliative care consult. Patients with a palliative care consult were more likely to have a code status change (56.6% v. 18.6%, χ2 = 68.0, p < 0.01). DISCUSSION: Mechanically ventilated patients had a high mortality, and CPR did not result in survival to discharge in patients over 65. Palliative care specialists are needed to guide goals of care discussions during the COVID-19 pandemic, as there are numerous barriers to equipping primary care teams to lead such discussions. The COVID-19 pandemic has underscored the vital role of palliative care in disaster response.

Modeling Outcomes Using Sequential Organ Failure Assessment (SOFA) Score-Based Ventilator Triage Guidelines During the COVID-19 Pandemic.

OBJECTIVE: To model performance of the Sequential Organ Failure Assessment (SOFA) score-based ventilator allocation guidelines during the COVID-19 pandemic. METHODS: A retrospective cohort study design was used. Study sites included 3 New York City hospitals in a single academic medical center. We included a random sample (205) of adult patients who were intubated (1002) from March 25, 2020, till April 29, 2020. Protocol criteria adapted from the New York State's 2015 guidelines were applied to determine which patients would have had mechanical ventilation withheld or withdrawn. RESULTS: 117 (57%) patients would have been identified for ventilator withdrawal or withholding based on the triage guidelines. Of those 117 patients, 28 (24%) survived hospitalization. Overall, 65 (32%) patients survived to discharge. CONCLUSION: Triage protocols aim to maximize survival by redirecting ventilators to those most likely to survive. Over 50% of this sample would have been identified as candidates for ventilator exclusion. Clinical judgment would therefore still be needed in ventilator reallocation, thus re-introducing bias and moral distress. This data suggests limited utility for SOFA score-based ventilator rationing. It raises the question of whether there is sufficient ethical justification to impose a life-ending decision based on a SOFA scoring method on some patients in order to offer potential benefit to a modest number of others.

Adherence of catheterization laboratory cardiologists to American College of Cardiology/American Heart Association guidelines for percutaneous coronary interventions and coronary artery bypass graft surgery: what happens in actual practice?

BACKGROUND: The American College of Cardiology and the American Heart Association have issued guidelines for the use of coronary artery bypass graft surgery (CABG) and percutaneous coronary interventions (PCI) for many years, but little is known about the impact of these evidence-based guidelines on referral decisions. METHODS AND RESULTS: A cardiac catheterization laboratory database used by 19 hospitals in New York State was used to identify treatment (CABG surgery, PCI, medical treatment, or nothing) recommended by the catheterization laboratory cardiologist for patients undergoing catheterization with asymptomatic/mild angina, stable angina, and unstable angina/non-ST-elevation myocardial infarction between January 1, 2005, and August 31, 2007. The recommended treatment was compared with indications for these patients based on American College of Cardiology/American Heart Association guidelines. Of the 16 142 patients undergoing catheterization who were found to have coronary artery disease, the catheterization laboratory cardiologist was the final source of recommendation for 10 333 patients (64%). Of these 10 333 patients, 13% had indications for CABG surgery, 59% for PCI, and 17% for both CABG surgery and PCI. Of the patients who had indications for CABG surgery, 53% were recommended for CABG and 34% for PCI. Of the patients with indications for PCI, 94% were recommended for PCI. For the patients who had indications for both CABG surgery and PCI, 93% were recommended for PCI and 5% for CABG surgery. Catheterization laboratory cardiologists in hospitals with PCI capability were more likely to recommend patients for PCI than hospitals in which only catheterization was performed. CONCLUSIONS: Patients with coronary artery disease receive more recommendations for PCI and fewer recommendations for CABG surgery than indicated in the American College of Cardiology/American Heart Association guidelines.

Ethical issues in pediatric emergency mass critical care.

INTRODUCTION: As a result of recent events, including natural disasters and pandemics, mass critical care planning has become a priority. In general, planning involves limiting the scope of disasters, increasing the supply of medical resources, and allocating scarce resources. Entities at varying levels have articulated ethical frameworks to inform policy development. In spite of this increased focus, children have received limited attention. Children require special attention because of their unique vulnerabilities and needs. METHODS: In May 2008, the Task Force for Mass Critical Care published guidance on provision of mass critical care to adults. Acknowledging that the critical care needs of children during disasters were unaddressed by this effort, a 17-member Steering Committee, assembled by the Oak Ridge Institute for Science and Education with guidance from members of the American Academy of Pediatrics, convened in April 2009 to determine priority topic areas for pediatric emergency mass critical care recommendations.Steering Committee members established subgroups by topic area and performed literature reviews of MEDLINE and Ovid databases. Draft documents were subsequently developed and revised based on the feedback from the Task Force. The Pediatric Emergency Mass Critical Care Task Force, composed of 36 experts from diverse public health, medical, and disaster response fields, convened in Atlanta, GA, on March 29-30, 2010. This document reflects expert input from the Task Force in addition to the most current medical literature. TASK FORCE RECOMMENDATIONS: The Ethics Subcommittee recommends that surge planning seek to provide resources for children in proportion to their percentage of the population or preferably, if data are available, the percentage of those affected by the disaster. Generally, scarce resources should be allocated on the basis of need, benefit, and the conservation of resources. Estimates of need, benefit, and resource utilization may be more subjective or objective. While the Subcommittee favors more objective methods, pediatrics lacks a simple, validated scoring system to predict benefit or resource utilization. The Subcommittee hesitantly recommends relying on expert opinion while pediatric triage tools are developed. If resources remain inadequate, they should then be allocated based on queuing or lottery. Choosing between these methods is based on ethical, psychological, and practical considerations upon which the Subcommittee could not reach consensus. The Subcommittee unanimously believes the proposal to favor individuals between 15 and 40 yrs of age is inappropriate. Other age-based criteria and criteria based on social role remain controversial. The Subcommittee recommends continued work to engage all stakeholders, especially the public, in deliberation about these issues.

Certified Registered Nurse Anesthetists' Management of the Perioperative Do-Not-Resuscitate Order: Evaluating Trends in Required Reconsideration.

Required reconsideration or review of do-not-resuscitate (DNR) orders perioperatively is recommended by the American Association of Nurse Anesthesiology and other organizations instead of automatic suspension of the DNR. A survey on perioperative DNR orders developed for a 2000 study by Coopmans and Gries was amended, reviewed by an expert panel, reformatted for web-based layout, and emailed to a random sample of 3,000 practicing Certified Registered Nurse Anesthetists (CRNAs) in the United States. From 207 returned responses, most CRNAs (63.5%) initially reported unfamiliarity with required reconsideration. After receiving a definition of the term, more CRNAs reported familiarity and past education on the concept. Chi-square analyses showed that familiarity with required reconsideration was associated with potential refusal to care for patients with active DNR orders (P=.004). CRNAs reported education or training on required reconsideration as uncommon and often informal. The survey found significant changes in reported perioperative DNR orders at practice institutions between the original survey by Coopmans and Gries and the present study. CRNAs' responses from the present survey indicate significant increases in policies of required review with patient involvement and policies of informed routine suspension (P<.001). Findings also revealed a significant decrease in reported policies of uninformed routine suspension (P<.001).