Ethical Implications of COVID-19: Palliative Care, Public Health, and Long-Term Care Facilities.

Outbreaks of COVID-19 among nursing homes, assisted living facilities, and other long-term care facilities in the United States have had devastating effects on residents. Restrictions such as banning visitors, sequestering residents, and testing health care staff have been implemented to mitigate the spread of the virus. However, consequences include a decline in mental and physical health, decompensation, and a sense of hopelessness among residents. We present and explore a case study at an assisted living facility addressing the ethical issues in balancing the management of the community versus the resident's right to autonomy and self-determination. A team of palliative care experts was brought into assisted living facilities to manage patients, care for well residents, and provide input in advance care planning and symptom management. The principles of self-determination and autonomy, stewardship, and distributive justice were explored. The use of nursing skills in triage and assessment, principles in public health, and the 8 domains of palliative care provided a comprehensive framework for structuring emergency operations. Palliative interventions and the role of palliative care nurses played an integral part in addressing ethical challenges in the containment of the virus and the deleterious effects of social isolation among the elderly.

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.

The process of obtaining informed consent to research in long term care facilities (LTCFs): An Observational Clinical Study.

We examined the process of obtaining informed consent (IC) for clinical research purposes in long-term care facilities (LTCFs) in Rhode Island (RI), USA. We assessed factors that were associated with resident ability to consent, such as Brief Interview for Mental Status scores. We used a self-administered questionnaire to further understand the effect of LTCF staff evaluation of ability to consent on residents' autonomy and control over their medical decision making.Observational clinical studyLong-term care setting.LTCF personnel provided us with residents' names, as well as their professional assessment of resident ability to consent. We used Brief Interview for Mental Status (BIMS) scores to assess the cognitive capacity of all residents to assess, and compare it to the assessment provided by LTCF personnel. A logistic regression analysis was performed to determine the relationship between LTCF assessment of resident ability to consent and BIMS score or confirmed diagnosis of dementia as seen from residents' medical charts. A self-administered questionnaire was filled out by the personnel of 10 LTCFs across RI, USA.LTCF personnel in 9 out of 10 recruited facilities reported that their assessment of resident ability to consent was based on subjective assessment of the resident as alert and oriented. There was a statistically significant relationship between the LTCF assessment of resident ability to consent and previously diagnosed dementia (OR: 0.211, 95% CI 0.107-0.415). Therefore, as BIMS scores increased, the likelihood that the resident would be deemed able to consent by LTCF personnel also increased. Furthermore, there was a statistically significant relationship between LTCF assessment of resident ability to consent and BIMS scores (OR: 1.430, 95% CI 1.274-1.605).There is no standard on obtaining IC for research studies conducted in LTCFs. We recommend that standardizing the process of obtaining IC in LTCFs can enhance the ability to perform research with LTCF residents.

Concepts of health in long-term home care: An empirical-ethical exploration.

BACKGROUND: Concepts of health have been widely discussed in the philosophy and ethics of medicine. Parallel to these theoretical debates, numerous empirical research projects have focused on subjective concepts of health and shown their significance for individuals and society at various levels. Only a few studies have so far investigated the concepts of health of non-professionals and professionals involved in long-term home care and discussed these empirical perspectives regarding moral responsibilities. OBJECTIVES: To identify the subjective concepts of the health of non-professionals (care recipients, informal caregivers) and professionals (registered nurses) involved in long-term home care and to discuss them against the background of existing normative guidelines addressing non-professionals and professionals' responsibilities and rights concerning health. RESEARCH DESIGN: A qualitative design was chosen to explore subjective concepts of health. Data were collected by semi-structured interviews; content analysis was applied according to Mayring. PARTICIPANTS AND RESEARCH CONTEXT: Twenty-eight interviews were conducted with non-professionals and professionals in long-term home care arrangements in Northern Germany. ETHICAL CONSIDERATIONS: Ethics approval was obtained from the Institutional Review Board at the University Medicine Greifswald (BB123/16). FINDINGS: Non-professionals and professionals consider health as a capability that enables them to participate in social activities and live their own lives according to their preferences. The former regard health particularly as a feeling and an attitude, the latter as the absence of disease with a focus on mental and emotional well-being. Both groups highlight the unsurpassable value of health and the personal responsibility for it. DISCUSSION: Normative guidelines applicable to practice in long-term home care discuss responsibilities and rights unevenly and raise several problems regarding non-professionals and professionals' subjective concepts of health. CONCLUSION: Individuals' concepts of health are relevant for the subsequent interpretation of rights and responsibilities and should, thus, be reflected upon to address health-related needs effectively.

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.

Barriers to ethical nursing practice for older adults in long-term care facilities.

AIMS AND OBJECTIVES: To explore barriers to ethical nursing practice for older adults in long-term care facilities from the perspectives of nurses in South Korea. BACKGROUND: The number of older adults admitted to long-term care facilities is increasing rapidly in South Korea. To provide this population with quality care, a solid moral foundation should be emphasised to ensure the provision of ethical nursing practices. Barriers to implementing an ethical nursing practice for older adults in long-term care facilities have not been fully explored in previous literature. DESIGN: A qualitative, descriptive design was used to explore barriers to ethical nursing practice as perceived by registered nurses in long-term care facilities in South Korea. METHODS: Individual interviews were conducted with 17 registered nurses recruited using purposive (snowball) sampling who care for older adults in long-term care facilities in South Korea. Data were analysed using qualitative content analysis. RESULTS: Five main themes emerged from the data analysis concerning barriers to the ethical nursing practice of long-term care facilities: emotional distress, treatments restricting freedom of physical activities, difficulty coping with emergencies, difficulty communicating with the older adult patients and friction between nurses and nursing assistants. CONCLUSIONS: This study has identified methods that could be used to improve ethical nursing practices for older adults in long-term care facilities. Because it is difficult to improve the quality of care through education and staffing alone, other factors may also require attention. RELEVANCE FOR CLINICAL PRACTICE: Support programmes and educational opportunities are needed for nurses who experience emotional distress and lack of competency to strengthen their resilience towards some of the negative aspects of care and being a nurse that were identified in this study.

Oral medicine modification for older adults: a qualitative study of nurses.

OBJECTIVE: Oral medicines are frequently modified (eg, tablets crushed) for older adults. However, these modifications can have clinical, legal and/or ethical implications. Nurses bear responsibility for medicine administration and hence, perform these modifications. The aim of this study was to investigate the knowledge, attitudes and beliefs of nurses about oral medicine modification for older adults. DESIGN: A qualitative study was conducted using semi-structured, face-to-face interviews with nurses providing care to older adults in acute and long-term care settings. Interviews were audio-recorded, transcribed verbatim and analysed thematically. SETTINGS: Sixteen purposively selected care settings; 4 acute-care and 12 long-term care settings were included. Nurses were recruited by convenience sampling at these sites. PARTICIPANTS: Eighteen nurses participated (83% female, 67% long-term care, 33% acute-care, median age (IQR) 38 years (32.5-52.0)). RESULTS: Three major themes: modifying-a necessary evil, nurses' role as patient advocate and modifying-we are working very much as a team and two minor themes: fractional dosing, and covert administration emerged from the data. Nurses viewed oral medicine modifications as being a routine and necessary occurrence in geriatric patient care due to limitations of available formulations and the presence of age-related challenges in drug administration. Nurses' knowledge of residents' requirements ensured that they advocate for those with individualised formulation needs, however, nurses rely on pharmacists for information about modifications. Nurses expressed a desire for supports including increased education and ward-specific, pharmacist-developed recommendations on common modifications. CONCLUSIONS: This study has provided useful insights into the views of nurses regarding oral medicine modification for older adults. The unique and varied formulation requirements of older adults must be acknowledged. Increased engagement by healthcare professionals, the pharmaceutical industry, regulatory agencies and policy-makers is required to facilitate the development of age-appropriate formulations. In the interim, practical interventions, informed by the findings of this study, are required.

Educational intervention on physical restraint use in long-term care facilities - Systematic review and meta-analysis.

"Physical restraint" formerly used as a measure of protection for psychiatric patients is now widely used. However, existing studies showed that physical restraint not only has inadequate effect of protection but also has negative effects on residents. To analyzes the impact of educational program on the physical restraint use in long-term care facilities. DESIGN: A systematic review with meta-analysis and meta-regression. Eight databases, including Cochrane Library, ProQuest, PubMed, EMBASE, EBSCO, Web of Science, Ovid Medline and Physiotherapy Evidence Database (PEDro), were searched up to January 2017. Eligible studies were classified by intervention and accessed for quality using the Quality Assessment Tool for quantitative studies. Sixteen research articles were eligible in the final review; 10 randomize control trail studies were included in the analysis. The meta-analysis revealed that the use of physical restraint was significantly less often in the experimental (education) group (OR = 0.55, 95% CI: 0.39 to 0.78, p < 0.001) compared to the control group. Meta-regression revealed the period of post education would have decreased the effect of the restraint educational program (ß: 0.08, p = 0.002); instead, the longer education period and more times of education would have a stronger effect of reducing the use of physical restraint (ß: -0.07, p < 0.001; ß: -0.04, p = 0.056). The educational program had an effect on the reduced use of physical restraint. The results of meta-regression suggest that long-term care facilities should provide a continuous education program of physical restraint for caregivers.

The PoET (Prevention of Error-Based Transfers) Project.

The PoET (Prevention of Error-based Transfers) Project is one of the Ethics Quality Improvement Projects (EQIPs) taking place at William Osler Health System. This specific project is designed to reduce transfers from long-term care to hospital that are caused by legal and ethical errors related to consent, capacity and substitute decision-making. The project is currently operating in eight long-term care homes in the Central West Local Health Integration Network and has seen a 56% reduction in multiple transfers before death in hospital.

Attitudes of Muslims Living in the United States Toward Long-Term Care Decisions and Diagnosis Disclosure for Elderly Family Members.

This study explored the attitudes of Muslims living in the United States toward long-term care decisions and diagnostic disclosure. Members of six mosques in New Jersey aged 40 and older agreed to participate in a telephone interview. Respondents were read medical scenarios and asked to indicate their preferences from a list of responses. Scenarios were: if they or a family member were disabled, who would they prefer to care for them; would they use a Muslim nursing home for themselves or loved one; who should be informed first if an individual had cancer or would die very soon (the individual or the individual's family); and whether these diagnoses should be disclosed to the individual's family without the individual's consent. If disabled, 62% (n = 103) of participants would prefer care at home, and 65.7% (n = 108) would prefer care at home for a disabled loved one. If there were a Muslim nursing home, 78.3% (n = 103) of participants would consider this facility for themselves and 76% (n = 127) would consider it for a loved one. Fifty-six percent (n = 93) of participants believed the individual should be informed first of a cancer diagnosis, and 54.6% (n = 89) believed the individual should be informed first if their death was imminent. Disclosing an individual's cancer diagnosis to family members without the individual's consent was acceptable to 49.7% (n = 83) and disclosing his or her imminent death was acceptable to 55.1% (n = 92). Participants were from 21 countries. Participants from Western countries were most likely to believe individuals should be informed first about their cancer diagnosis or imminent death.

The Case.

Mr. Hope is a 40-year-old man who has resided at a long-term care facility for the past 10 years. The resident was originally admitted to the nursing home for his inability to care for himself secondary to advanced AIDS and complications from progressive multifocal leukoencephalopathy (PML). When he initially arrived at the nursing home, Mr. Hope was able to smile and appeared to respond to some of the staff's requests. Now, he responds by wincing when told that procedures are being performed and especially when he is told that he has to go back to the hospital. He is extremely contracted, with his arms wedded to his chest in a crossed fashion, as though he is protecting himself from blows. Mr. Hope's family consists of a partner, his parents, and one sibling. Numerous conversations have been had with the family, and according to the facility staff, "they persist in continuing aggressive measures with the hope that the patient will wake up and walk out of the facility." What had been frequent visits to the local hospital ER have increased substantially in the last few months, for what appear to be new infections and pneumonia. During most visits he ultimately spends a few days in the hospital to resolve his acute issues. On his most recent return to the long-term care facility, the medical staff approached the family about Mr. Hope's code status. The family continues to insist on a full code status and that he be provided every opportunity to "live." The staff is very concerned about Mr. Hope and his welfare. Many of the nursing staff have grown attached to him over the years, and watching him deteriorate has been distressing. They see part of their role as being his advocate and supporting him in ways that his own family has not. They express very strong reservations about performing CPR on Mr. Hope because they think it will be ineffective and they will have to break his upper extremities in order to gain access to his chest for resuscitation. The staff has contacted the ethics consultation service with the request that Mr. Hope needs protection and that his own family is not making the best decisions for him.

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.

Declining body, institutional life, and making home-are they at odds? The lived experiences of moving through staged care in long-term care settings.

This study examines elderly residential life in long-term care settings, focusing on the ways residents interact with their physical and social environments. It further proposes that the residential environment is an important player for everyday ethics in long-term care settings, and is also an important factor in enhancing the quality of life for residents. By employing the theories of place identity and environmental meanings and listening to the voices of the elderly collected through an ethnographic field study in elderly homes of life care, the study reveals the residents' experiences of going through declining health and moving through the stages of care. Two major themes were identified. The first theme of liminal life portrays the elders' fears as they move through the stages of care. This theme includes four sub-themes: (1) the loss of home and the loss of autonomy; (2) impending loss and its constant reminders; (3) the social classification of "us" and "them"; (4) the irreversibility of moving. The second theme of relational life describes the keys to successful transitions as experienced and told by the residents. The second theme includes three sub-themes: (1) shifting identity and the acceptance of old age; (2) human interdependence and building trust; (3) an accompanied death. Study implications are further discussed, including specific suggestions for social programs and revisions to the physical environments. A more fundamental question about place-based staged care is also raised so as to serve as a point of departure for reflections and discussions amongst health professionals, planners and designers, and other decision-makers.

'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.