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.

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.

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.

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.

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.

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).

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.

OK, Boomer, MD: The Rights of Aging Physicians and the Health of Our Communities.

How do we balance the rights of aging physicians against the right of the public to competent health care? This version of a classic public health ethics dilemma is here now and likely to increase as the population ages. Peer review has long been the standard mechanism for assessing physician competence, but it is subjective and too easily subverted. New options are needed, both in medicine and throughout the professions, but they are challenging to implement. Physicians have an ethical obligation to protect the health of the public by acknowledging, assessing, and addressing the cognitive effects of aging on medical competence.

Older Adults and Covid-19: The Most Vulnerable, the Hardest Hit.

Older adults in the United States have been the age group hardest hit by the Covid pandemic. They have suffered a disproportionate number of deaths; Covid patients eighty years or older on ventilators had fatality rates higher than 90 percent. How could we have better protected older adults? Both the popular press and government entities blamed nursing homes, labeling them "snake pits" and imposing harsh fines and arduous new regulations. We argue that this approach is unlikely to improve protections for older adults. Rather than focusing exclusively on acute and critical resources, including ventilators, a plan that respected the best interests of older adults would have also supported nursing homes, a critical part of the health care system. Better access to protective equipment for staff members, early testing of staff members and patients, and enhanced means of communication with families were what was needed. These preventive measures would have offered greater benefit to the oldest members of our population than the exclusive focus on acute care.

"We're Not Ready, But I Don't Think You're Ever Ready." Clinician Perspectives on Implementation of Crisis Standards of Care.

Background: The COVID-19 pandemic has highlighted health care systems' vulnerabilities. Hospitals face increasing risk of periods of scarcity of life-sustaining resources such as ventilators for mechanical respiratory support, as has been the case in Italy as of March, 2020. The National Academy of Medicine has provided guidance on crisis standards of care, which call for the reallocation of scarce medical resources to those who will benefit most during extreme situations. Given that this will require a departure from the usual fiduciary duty of the bedside clinician, we determined and mapped potential barriers to the implementation of the guidelines from stakeholders using an implementation science framework. Methods: A protocol was created to operationalize national and state guidelines for triaging ventilators during crisis conditions. Focus groups and key informant interviews were conducted from July-September 2018 with clinicians at three acute care hospitals of an urban academic medical center. Respiratory therapists, intensivists, nursing leadership and the palliative care interdisciplinary team participated in focus groups. Key informant interviews were conducted with emergency management, respiratory therapy and emergency medicine. Subjects were presented the protocol and their reflections were elicited using a semi-structured interview guide. Data from transcripts and notes were categorized using a coding strategy based on the Theoretical Domains Framework. Results: Participants anticipated that implementing this protocol would challenge their roles and identities as clinicians including both their fiduciary duty to the patient and their decision-making autonomy. Despite this, many participants acknowledged the need for such a protocol to standardize care and minimize bias as well as to mitigate potential consequences for individual clinicians. Participants identified the question of considering patient quality of life in triage decisions as an important and unresolved ethical issue in disaster triage. Conclusion: Clinicians' discomfort with shifting roles and obligations could pose implementation barriers for crisis standards of care.

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.

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.

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.

"Tho' much is taken, much abides": A Good Life within Dementia.

In writing these essays, we were asked to consider, "What makes a good life in late life?" I thought instantly, perhaps like many people, of photos and stories of older people taking up new careers and new hobbies-running marathons and soup kitchens, starting organic farms. This response is right and proper. Older people can leverage wisdom and creativity to make wonderful contributions to their communities and should be celebrated for doing so. But this happy picture is incomplete. We live longer than ever before, and with that long life, many of us can expect disability. This is the product of medical success. We are less likely to die from cancer, a heart attack, or a stroke; we survive with chronic illnesses and their associated disabilities. A good life in late life, for many of us, will be a life with disability. For this essay, I focus on dementia, a common and ultimately fatal illness, and one that typically lasts many years from the start of symptoms to the end. More than five million Americans currently suffer from dementia; fifteen million paid and volunteer caregivers help support them. What would a good life with dementia look like? How would it change from the early phase, when cognitive impairment and other challenges are relatively modest, to the final phase marked by severe cognitive and physical decline?

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.

Employer Requirements to Work during Emergency Responses: Key Ethics Considerations.

Local health departments and their employees are at the forefront of emergency preparedness and response. Yet, recent studies have found that some local public health workers are unwilling to report to work in a variety of disaster scenarios. This can greatly compromise a response, as many local health departments need "all hands on deck" to effectively meet increased demands. To address these concerns, local health departments have employed varied policy strategies to ensure that employees do report to work. After describing different approaches taken by local health departments throughout the United States, we briefly identify and explore key ethics considerations that arise for local health departments when employees are required to report to work for emergency responses. We then discuss how these ethics considerations may inform local health department practices intended to promote a robust emergency response.

A Good Death.

A good death is hard to find. Family members tell us that loved ones die in the wrong place-the hospital-and do not receive high-quality care at the end of life. This issue of the Hastings Center Report offers two articles from authors who strive to provide good end-of-life care and to prevent needless suffering. We agree with their goals, but we have substantial reservations about the approaches they recommend. Respect for the decisions of patients and their surrogates is a relatively new and still vulnerable aspect of medical care. For thousands of years, patients and surrogates had no say in medical decision-making. Today, standards support shared decision-making, but these articles both carve out exceptions to those standards, limiting the rights of patients and families in decisions about specific end-of-life treatments. As bioethics consultants in an acute care setting, we frequently confront conflicts similar to those described by Jeffrey Berger and by Ellen Robinson and colleagues. In such cases, our service emphasizes redoubled efforts at communication and mediation. Focusing on goals and values, rather than interventions, produces the best possible collaboration in health care decision-making. Cases in which we would overturn a surrogate's recommendations regarding palliative sedation or do-not-resuscitate orders are rare and require careful processes and clear evidence that the surrogate's choice is contrary to patient values.