SEeking AnsweRs for Care Homes during the COVID-19 pandemic (COVID SEARCH).

The care and support of older people residing in long-term care facilities during the COVID-19 pandemic has created new and unanticipated uncertainties for staff. In this short report, we present our analyses of the uncertainties of care home managers and staff expressed in a self-formed closed WhatsApp™ discussion group during the first stages of the pandemic in the UK. We categorised their wide-ranging questions to understand what information would address these uncertainties and provide support. We have been able to demonstrate that almost one-third of these uncertainties could have been tackled immediately through timely, responsive and unambiguous fact-based guidance. The other uncertainties require appraisal, synthesis and summary of existing evidence, commissioning or provision of a sector- informed research agenda for medium to long term. The questions represent wider internationally relevant care home pandemic-related uncertainties.

The Japan Geriatrics Society consensus statement "recommendations for older persons to receive the best medical and long-term care during the COVID-19 outbreak-considering the timing of advance care planning implementation".

Since the end of 2019, a life-threatening infectious disease (coronavirus disease 2019: COVID-19) has spread globally, and numerous victims have been reported. In particular, older persons tend to suffer more severely when infected with a novel coronavirus (SARS-CoV-2) and have higher case mortality rates; additionally, outbreaks frequently occur in hospitals and long-term care facilities where most of the residents are older persons. Unfortunately, it has been stated that the COVID-19 pandemic has caused a medical collapse in some countries, resulting in the depletion of medical resources, such as ventilators, and triage based on chronological age. Furthermore, as some COVID-19 cases show a rapid deterioration of clinical symptoms and accordingly, the medical and long-term care staff cannot always confirm the patient's values and wishes in time, we are very concerned as to whether older patients are receiving the medical and long-term care services that they wish for. It was once again recognized that it is vital to implement advance care planning as early as possible before suffering from COVID-19. To this end, in August 2020, the Japan Geriatrics Society announced ethical recommendations for medical and long-term care for older persons and emphasized the importance of conducting advance care planning at earlier stages. Geriatr Gerontol Int 2020; 20: 1112-1119.

Ethical implications of digital communication for the patient-clinician relationship: analysis of interviews with clinicians and young adults with long term conditions (the LYNC study).

BACKGROUND: Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living with long-term conditions. METHODS: A total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom (UK)-based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites (cancer, liver, renal, cystic fibrosis and mental health) were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms. RESULTS: Clinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician's duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication. CONCLUSIONS: The ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to.

Difficult healthcare transitions: Ethical analysis and policy recommendations for unrepresented patients.

BACKGROUND: In Ontario, Canada, patients who lack decision-making capacity and have no family or friends to act as substitute decision-makers currently rely on the Office of the Public Guardian and Trustee to consent to long-term care (nursing home) placement, but they have no legal representative for other placement decisions. OBJECTIVES: We highlight the current gap in legislation for difficult transition cases involving unrepresented patients and provide a novel framework for who ought to assist with making these decisions and how these decisions ought to be made. RESEARCH DESIGN: This paper considers models advanced by Volpe and Steinman with regard to who ought to make placement decisions for unrepresented patients, as well as current ethical models for analyzing how these decisions should be made. PARTICIPANTS AND RESEARCH CONTEXT: We describe an anonymized healthcare transition case to illustrate the fact that there is no legally recognized decision-maker for placement destinations other than long-term care facilities and to show how this impacts all stakeholders. ETHICAL CONSIDERATIONS: The case provided is an anonymized vignette representing a typical transition case involving an unrepresented patient. FINDINGS: As a result of a gap in provincial legislation, healthcare providers usually determine the appropriate placement destination without a clear framework to guide the process and this can cause significant moral distress. DISCUSSION: We argue for a team decision-making approach in the short term, and a legislative change in the long-term, to respect the patient voice, evaluate benefit and risk, enhance collaboration between healthcare providers and patients, and promote social justice. We believe that our approach, which draws upon the strengths of interprofessional teams, will be of interest to all who are concerned with the welfare and ethical treatment of the patients for whom they care. CONCLUSIONS: One of the main strengths of our recommendation is that it provides all members of the healthcare team (including nurses, social workers, therapists, and others) an increased opportunity to advocate on behalf of unrepresented patients.

[Dignity and Ethics of Care in the Neurodegenerative Diseases]. / Dignidad y Ética del Cuidar en las Enfermedades Neurodegenerativas.

In the context of neurodegenerative diseases the doctor is called more than in other areas to respond not only to the simple question of health, but also to the need of assistance, which implicates the necessity of relationship, too. The scheme of symptom diagnosis treatment healing is to be replaced in these cases with a treatment based on an open system of uncertain length and results. It is a model called ″medicine of incurable″, which aims to combat the discomfort of the disease rather than the fight against the disease. In this perspective, the commitment to ensure a quality of life to the sick in itself means attention to his dignity, which is expressed in acting towards him treating him always as a person, that is protagonist of his life, and then to recognize his right to be assisted in physical, psychological and spiritual dimensions. In this model it becomes particularly important to converse with the patient, even if affected by cognitive pathologies, as well as to stimulate hope, with the belief that human being, if properly supported, is still able, even in extremely critical situations, to make out of his personal experience a chance to grow, thanks to the construction of new balances, however weak they may be.

'A disease that makes criminals': encephalitis lethargica (EL) in children, mental deficiency, and the 1927 Mental Deficiency Act.

Encephalitis lethargica (EL) was an epidemic that spread throughout Europe and North America during the 1920s. Although it could affect both children and adults alike, there were a strange series of chronic symptoms that exclusively affected its younger victims: behavioural disorders which could include criminal propensities. In Britain, which had passed the Mental Deficiency Act in 1913, the concept of mental deficiency was well understood when EL appeared. However, EL defied some of the basic precepts of mental deficiency to such an extent that amendments were made to the Mental Deficiency Act in 1927. I examine how clinicians approached the sequelae of EL in children during the 1920s, and how their work and the social problem that these children posed eventually led to changes in the legal definition of mental deficiency. EL serves as an example of how diseases are not only framed by the society they emerge in, but can also help to frame and change existing concepts within that same society.

[Ethical issues of artificial nutritional support]. / Ethische Fragen der künstlichen Ernährung.

This review article discusses some ethical issues of clinical nutrition according to the Beauchamp and Childress principles of bioethics: "respect for autonomy, nonmaleficence, beneficence, and justice".

Which newborn infants are too expensive to treat? Camosy and rationing in intensive care.

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the 'social quality of life (sQOL)' model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal 'quality of life' and Camosy's 'sQOL' should factor into these decisions, and I outline two practical proposals.

Complex discharges and undocumented patients: growing ethical concerns.

A growing number of discharges at acute-care hospitals involve patients who are undocumented and lack legal status. Because such patients are ineligible for public assistance, long-term care facilities will routinely deny them admission. These discharges become complex discharges because of such financial barriers. If local family support is unavailable, discharging such patients to a safe and suitable location becomes increasingly difficult. These complex discharges implicate a number of ethical principles. We describe such complex discharge cases, apply various ethical frameworks, and call for potential policy solutions to address this growing ethical concern.

Deep brain stimulation and ethics: perspectives from a multisite qualitative study of Canadian neurosurgical centers.

OBJECTIVE: Deep brain stimulation (DBS) is an approved neurosurgical intervention for motor disorders such as Parkinson disease. The emergence of psychiatric uses for DBS combined with the fact that it is an invasive and expensive procedure creates important ethical and social challenges in the delivery of care that need further examination. We endeavored to examine health care provider perspectives on ethical and social challenges encountered in DBS. METHODS: Health care providers working in Canadian DBS surgery programs participated in a semistructured interview to identify and characterize ethical and social challenges of DBS. A content analysis of the interviews was conducted. RESULTS: Several key ethical issues, such as patient screening and resource allocation, were identified by members of neurosurgical teams. Providers described challenges in selecting patients for DBS on the basis of unclear evidence-based guidance regarding behavioral issues or cognitive criteria. Varied contexts of resource allocation, including some very challenging schemas, were also reported. In addition, the management of patients in the community was highlighted as a source of ethical and clinical complexity, given the need for coordinated long-term care. CONCLUSIONS: This study provides insights into the complexity of ethical challenges that providers face in the use of DBS across different neurosurgical centers. We propose actions for health care providers for the long-term care and postoperative monitoring of patients with DBS. More data on patient perspectives in DBS would complement the understanding of key challenges, as well as contribute to best practices, for patient selection, management, and resource allocation.

Beyond speculative robot ethics: a vision assessment study on the future of the robotic caretaker.

In this article we develop a dialogue model for robot technology experts and designated users to discuss visions on the future of robotics in long-term care. Our vision assessment study aims for more distinguished and more informed visions on future robots. Surprisingly, our experiment also led to some promising co-designed robot concepts in which jointly articulated moral guidelines are embedded. With our model, we think to have designed an interesting response on a recent call for a less speculative ethics of technology by encouraging discussions about the quality of positive and negative visions on the future of robotics.

Tailor-made finance versus tailor-made care. Can the state strengthen consumer choice in healthcare by reforming the financial structure of long-term care?

BACKGROUND: Policy instruments based on the working of markets have been introduced to empower consumers of healthcare. However, it is still not easy to become a critical consumer of healthcare. OBJECTIVES: The aim of this study is to analyse the possibilities of the state to strengthen the position of patients with the aid of a new financial regime, such as personal health budgets. METHODS: Data were collected through in-depth interviews with executives, managers, professionals and client representatives of six long-term care institutions. RESULTS: With the introduction of individual budgets the responsibility for budgetary control has shifted from the organisational level to the individual level in the caregiver-client relationship. Having more luxurious care on offer necessitates a stronger demarcation of regular care because organisations cannot simultaneously offer extra care as part of the standard care package. New financial instruments have an impact on the culture of receiving and giving care. Distributive justice takes on new meaning with the introduction of financial market mechanisms in healthcare; the distributing principle of 'need' is transformed into the principle of 'economic demand'. CONCLUSION: Financial instruments not only act as a countervailing power against providers insufficiently client-oriented, but are also used by providers to reinforce their own positions vis-à-vis demanding clients. Tailor-made finance is not the same as tailor-made care.

Patients in a permanent vegetative state or minimally conscious state in the Maine-et-Loire county of France: A cross-sectional, descriptive study.

PURPOSES: To determine how many patients in a permanent vegetative state or a minimally conscious state are living in healthcare institutions in the Maine-et-Loire county of western France. To evaluate patient management, physical complications, problems encountered by nursing staff and the patient care teams' wishes. PATIENTS AND METHODS: We performed a cross-sectional, descriptive study in physical medicine and rehabilitation departments, nursing homes, geriatric units and local hospitals. All patients and their medical records were examined by the same investigator. A questionnaire for carers was used to evaluate nursing tasks and a second questionnaire for head nurses served to assess staff needs and the patient care teams' wishes. RESULTS: Thirteen patients were identified. Four were in a permanent vegetative state and nine were in a minimally conscious state. Ten patients were cared for in geriatric units, one in a physical medicine and rehabilitation department and two in local hospitals. All patients displayed limited joint angle ranges. All the patient care teams reported practical difficulties and ethical issues. DISCUSSION: Our survey highlighted the variety of care scenarios for patients in a permanent vegetative state or a minimally conscious state. It revealed practical difficulties and, above all, ethical questions. The present work could serve as a basis for implementation of a recently issued French government circular on defining specific wards for these patients.

The role of empirical research in bioethics.

There has long been tension between bioethicists whose work focuses on classical philosophical inquiry and those who perform empirical studies on bioethical issues. While many have argued that empirical research merely illuminates current practices and cannot inform normative ethics, others assert that research-based work has significant implications for refining our ethical norms. In this essay, I present a novel construct for classifying empirical research in bioethics into four hierarchical categories: Lay of the Land, Ideal Versus Reality, Improving Care, and Changing Ethical Norms. Through explaining these four categories and providing examples of publications in each stratum, I define how empirical research informs normative ethics. I conclude by demonstrating how philosophical inquiry and empirical research can work cooperatively to further normative ethics.

Immigration and the direct long-term care workforce: implications for education and policy.

The escalating demand for trained direct long-term care (DLTC) workers, those individuals with the most sustained direct contact with vulnerable older adults in homes and facilities, is a consequence of our rapidly aging population. Research documents the present and projected shortages of DLTC workers, and developed nations are increasingly turning to immigrant women to fulfill these workforce needs. The authors identify international trends that influence the availability of these workers. Following a broad overview of the DLTC workforce, they turn to a specific examination of immigrants working in long-term care settings in the United States. The authors raise a number of questions about this changing workforce profile. They outline four ways that institutes of higher education can help improve the DLTC workforce in the United States and suggest that colleges and universities work in partnership with policy makers and the long-term care industry to this end.

Maintenance of patients' integrity in long-term institutional care.

This study aimed to describe and compare the views of nurses and older patients' relatives on factors restricting the maintenance of patient integrity in long-term care. The purposive sample comprised 222 nurses and 213 relatives of older patients in four Finnish long-term care institutions. The data were collected using a self-developed questionnaire addressing five sets of factors relating to patients, relatives, nurses, the organization and society. The maintenance of patient integrity was restricted by: (1) social factors, including lack of respect for long-term geriatric care and lack of adequate resources; (2) patient factors relating to forgetfulness; and (3) factors relating to nurses and relatives in maintaining patient integrity. Better maintenance of patient integrity requires that more consideration is paid to issues of social respect and to the availability of adequate resources. Closer attention must be given to patients who are forgetful and unable to take part in decision making.

Gender-based disparities East/West: rethinking the burden of care in the United States and Taiwan.

When feminist bioethicists express concerns about health-related gender disparities, they raise considerations about justice and gender that traditional bioethicists have either not raised or raised somewhat weakly. In this article, I first provide a feminist analysis of long-term healthcare by and for women in the United States and women in Taiwan. Next, I make the case that, on average, elderly US and Taiwanese women fare less well in long-term care contexts than do elderly US and Taiwanese men. Finally, I explore some suggested practical remedies to reduce gender disparities in long-term care contexts.