Eating at Risk within Long-Term Care: A Case for the Relational Ethics Lens.

Within long-term care homes (LTCHs), conflicts occur between residents' desires, LTCH constraints, and healthcare providers' concerns about risks of harm. Due to the high prevalence of dysphagia and malnutrition in these settings, decisions regarding food choices are a common source of such tensions. Existing biomedical ethical models fail to capture the complexity of the interprofessional chronic care environment. This article proposes an alternative ethical lens, the relational ethics model. We describe a case illustrating the application of a decision-making framework with a relational ethics lens for a resident with severe dysphagia and malnutrition. We highlight how the bioethics model excludes important actors from ethical decision making. We encourage registered dietitians working in LTCH to incorporate a relational ethics model into their practice to help identify resident's values and bring attention to the interconnectedness of caring relationships and contextual factors. This approach can inform difficult decisions regarding the food and nutrition choices of residents and may facilitate meaningful outcomes for both individuals and the long-term care community.

Dying well in nursing homes during COVID-19 and beyond: The need for a relational and familial ethic.

This paper applies a relational and familial ethic to address concerns relating to nursing home deaths and advance care planning during Covid-19 and beyond. The deaths of our elderly in nursing homes during this pandemic have been made more complicated by the restriction of visitors even at the end of life, a time when families would normally be present. While we must be vigilant about preventing unnecessary deaths caused by coronavirus outbreaks in nursing homes, some deaths of our elders are inevitable. Thus, it is essential that advanced care planning occurs in a way that upholds the familial and relational aspects of elders' lives that often matter to them the most. We invoke concepts from feminist ethicists like Hilde Lindemann and Eva Kittay and introduce Avery Weisman and Thomas Hackett's concept of "appropriate death" to suggest better ways of planning for those deaths of our elderly that cannot be avoided. Our hope is to allow for deaths that are as meaningful as possible for both the elderly and the family members who survive them.

Ethical care during COVID-19 for care home residents with dementia.

The COVID-19 pandemic has had a devastating impact on care homes in the United Kingdom, particularly for those residents living with dementia. The impetus for this article comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient ethical values for delivering care to care home residents living with dementia during the pandemic was derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, well-being, safety, and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this article discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, well-being and personhood - of residents and staff - are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and Personal Protective Equipment, unclear data, and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued.

[Aging and dying in diversity-implications of an intersectional perspective for analyzing care policy discourses]. / Altern und Sterben in Diversität ­ Implikationen einer intersektionalen Perspektive für die Analyse pflegepolitischer Diskurse.

In view of the growing population, which is increasingly aging in diversity, questions of social justice and of avoiding discrimination in end of life nursing care become increasingly more relevant from an ethical point of view. This article addresses the discrepancies between normative claims of an equitable approach to provision of nursing services and the sources of structural barriers. In particular at the end of life, often already vulnerable groups are subjected to discrimination in nursing care. Further reflections refer to implications of intersectionality for care-ethical approaches and for the methodology of discourse analysis. This study investigated how diversity and justice are formed in the care policy discourse. It becomes evident how parts of the care policy discourse largely ignore individual ethical implications. Accordingly, critical reflections on inequalities in nursing care remain unconsidered in the discourses. Starting points for processes of change that begin from concepts of individual care ethics are presented.

Relational autonomy in action: Rethinking dementia and sexuality in care facilities.

BACKGROUND: Caregivers and administrators in long-term facilities have fragile moral work in caring for residents with dementia. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. The conditions for sexual agency are directly affected by caregivers' perceptions and attitudes, as well as facility policies. OBJECTIVE: This article aims to clarify how to approach capacity determinations as it relates to sexual activity, propose how to theorize about patient autonomy in this context, and suggest some considerations for finding an ethically responsible and practically feasible way to respect the sexual rights of this population. RESEARCH DESIGN: The focus is on residents with early to moderate dementia in states of daily dependency on professional caregivers. The article critically examines existing empirical research on sexuality among persons with dementia, caregivers' attitudes, and institutional roadblocks to enabling residents' sexuality. A relational lens and insights from disability studies are used in the philosophical analysis. PARTICIPANTS AND RESEARCH CONTEXT: No research participants were part of this analysis. ETHICAL CONSIDERATIONS: This article offers a conceptual analysis and normative framework only. FINDINGS: The analysis highlights the delicate balance that capacity assessments for sexual activity have to strike; while caregivers should protect those who cannot give adequate consent, the denial of sexuality among residents can cause deep, long-ranging harms. Sexual agency features into an ongoing sense of self for many individuals with dementia, and the imposition of inappropriate standards and expectations for sexual autonomy can lead to unwarranted obstacles to sexual activity. DISCUSSION: Recommendations include developing clear and inclusive institutional policies and practices of care, providing education for caregivers on how to discuss and document residents' sexual preferences over time, and taking advantage of ethics consultation services. CONCLUSION: This analysis establishes the need for more research and discussion on this sensitive topic. Future research should investigate the specific responsibilities of caregivers in furthering the sexual interests of residents, how exactly to modify existing capacity instruments, and how best to support historically marginalized patients in their sexual identities.

Conflicting rationales: leader's experienced ethical challenges in community health care for older people.

BACKGROUND: Ethical challenges arise in all types of care, and leaders need to be aware of how to resolve these challenges. Healthcare systems tend to be organised around medical conditions, and the patient is often faced with a series of uncoordinated visits to multiple specialties. Ideally, care should be organised around the patient's needs. AIM: The purpose of this article was to highlight some ethical challenges perceived by leaders with responsibility for management and service distribution, finance and ensuring quality of community health services for older people. METHOD: This study had a qualitative design with a qualitative content analysis of one focus group with six leaders that met four times in total. Leaders from the community healthcare sector in one Norwegian municipality were included, representing both nursing homes and home-based health care. The study followed the intentions of the Declaration of Helsinki and standard ethical principles. The Norwegian Social Science Data Services approved the study. All participants voluntarily gave written informed consent. FINDINGS: The main theme that emerged from this study was the ethical challenge leaders felt in the form of an inherent conflict between a caring rationale versus economic or technological rationales. Four categories emerged: (i) Management: quality versus economy; (ii) Prioritisation: fair distribution of healthcare services; (iii) Responsibility: considering individuals' needs versus the needs of the whole community; and (iv) Welfare technology: possibilities and challenges. CONCLUSION: Leaders' responsibilities in community health care for older people need to strike a balance between ethical principles in the management of limited resources.

Sexual Consent Capacity: Ethical Issues and Challenges in Long-Term Care.

More than two million Americans live in nursing homes and other long-term care facilities. Available research suggests that the majority of older nursing home residents, including those with some degree of cognitive impairment, place significant value upon a variety of sexual activities. With nearly half of all residents suffering from dementia, psychologists and other mental health professionals often face significant challenges in the assessment of their patients' sexual consent capacity. A primary ethical issue is to balance an individual resident's rights to autonomy and privacy with a facility's need to protect residents from harm. Sexual consent capacity functions on a continuum across time and behavior. It also cannot be predetermined by proxy, in which an individual prepares legal documents ahead of time to identify a surrogate decision maker; sexual consent capacity must be determined by information obtained in the present moment. In this paper, an approach to the assessment of residents' sexual consent capacity, encompassing knowledge, reasoning, and voluntariness, along with a brief overview of sexual activity among long-term care residents, will be presented. A case example is offered to illustrate complex clinical dilemmas involving staff attitudes, residents' rights, and family dynamics.

Medication Refusal: Resident Rights, Administration Dilemma.

Occasionally, residents actively or passively refuse to take medications. Residents may refuse medication for a number of reasons, including religious beliefs, dietary restrictions, misunderstandings, cognitive impairment, desire to self-harm, or simple inconvenience. This action creates a unique situation for pharmacists and long-term facility staff, especially if patients have dementia. Residents have the legal right to refuse medications, and long-term care facilities need to employ a process to resolve disagreement between the health care team that recommends the medication and the resident who refuses it. In some cases, simple interventions like selecting a different medication or scheduling medications in a different time can address and resolve the resident's objection. If the medical team and the resident cannot resolve their disagreement, often an ethics consultation is helpful. Documenting the resident's refusal to take any or all medications, the health care team's actions and any other outcomes are important. Residents' beliefs may change over time, and the health care team needs to be prepared to revisit the issue as necessary.

Defining Ethical Placemaking for Place-Based Interventions.

As place-based interventions expand and evolve, deeper reflection on the meaning of ethical placemaking is essential. I offer a summary account of ethical placemaking, which I propose and define as an ethical ideal and practice for health and for health justice, understood as the capability to be healthy. I point to selected wide-ranging examples-an urban pathway, two long-term care settings, innovations in refugee health services, and a McDonald's restaurant-to help illustrate these ideas.

End-of-life care communications and shared decision-making in Norwegian nursing homes--experiences and perspectives of patients and relatives.

BACKGROUND: Involving nursing home patients and their relatives in end-of-life care conversations and treatment decisions has recently gained increased importance in several Western countries. However, there is little knowledge about how the patients themselves and their next-of-kin look upon involvement in end-of-life care decisions. The purpose of this paper is to explore nursing home patients' and next-of-kin's experiences with- and perspectives on end-of-life care conversations, information and shared decision-making. METHODS: The study has a qualitative and explorative design, based on a combination of individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 33 relatives. The data was analysed applying a "bricolage" approach". Participation was based on informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. RESULTS: Few patients and relatives had participated in conversations about end-of-life care. Most relatives wanted such conversations, while the patients' opinions varied. With some exceptions, patients and relatives wanted to be informed about the patient's health condition. The majority wanted to be involved in the decision-making process, but leave the final decisions to the health professionals. Among the patients, the opinion varied; some patients wanted to leave the decisions more or less completely to the nursing home staff. Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed these questions with their family. The relatives' opinions of the patient's preferences were mainly based on assumptions; they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these questions. CONCLUSION: Nursing home staff should initiate conversations about preferences for end-of-life care, assisting patients and relatives in talking about these issues, while at the same time being sensitive to the diversity in opinions and the timing for such conversations. As the popularity of advance care planning increases in many Western countries, discussions of patients' and relatives' perspectives will be of great interest to a broader audience.

Ethical challenges in nursing homes--staff's opinions and experiences with systematic ethics meetings with participation of residents' relatives.

BACKGROUND: Many ethical problems exist in nursing homes. These include, for example, decision-making in end-of-life care, use of restraints and a lack of resources. AIMS: The aim of the present study was to investigate nursing home staffs' opinions and experiences with ethical challenges and to find out which types of ethical challenges and dilemmas occur and are being discussed in nursing homes. METHODS: The study used a two-tiered approach, using a questionnaire on ethical challenges and systematic ethics work, given to all employees of a Norwegian nursing home including nonmedical personnel, and a registration of systematic ethics discussions from an Austrian model of good clinical practice. RESULTS: Ninety-one per cent of the nursing home staff described ethical problems as a burden. Ninety per cent experienced ethical problems in their daily work. The top three ethical challenges reported by the nursing home staff were as follows: lack of resources (79%), end-of-life issues (39%) and coercion (33%). To improve systematic ethics work, most employees suggested ethics education (86%) and time for ethics discussion (82%). Of 33 documented ethics meetings from Austria during a 1-year period, 29 were prospective resident ethics meetings where decisions for a resident had to be made. Agreement about a solution was reached in all 29 cases, and this consensus was put into practice in all cases. Residents did not participate in the meetings, while relatives participated in a majority of case discussions. In many cases, the main topic was end-of-life care and life-prolonging treatment. CONCLUSIONS: Lack of resources, end-of-life issues and coercion were ethical challenges most often reported by nursing home staff. The staff would appreciate systematic ethics work to aid decision-making. Resident ethics meetings can help to reach consensus in decision-making for nursing home patients. In the future, residents' participation should be encouraged whenever possible.

Evaluation and perceived results of moral case deliberation: A mixed methods study.

BACKGROUND: Moral case deliberation is increasingly becoming part of various Dutch healthcare organizations. Although some evaluation studies of moral case deliberation have been carried out, research into the results of moral case deliberation within aged care is scarce. RESEARCH QUESTIONS: How did participants evaluate moral case deliberation? What has moral case deliberation brought to them? What has moral case deliberation contributed to care practice? Should moral case deliberation be further implemented and, if so, how? RESEARCH DESIGN: Quantitative analysis of a questionnaire study among participants of moral case deliberation, both caregivers and team leaders. Qualitative analysis of written answers to open questions, interview study and focus group meetings among caregivers and team leaders. PARTICIPANTS AND RESEARCH CONTEXT: Caregivers and team leaders in a large organization for aged care in the Netherlands. A total of 61 moral case deliberation sessions, carried out on 16 care locations belonging to the organization, were evaluated and perceived results were assessed. ETHICAL CONSIDERATIONS: Participants gave informed consent and anonymity was guaranteed. In the Netherlands, the law does not prescribe independent ethical review by an Institutional Review Board for this kind of research among healthcare professionals. FINDINGS: Moral case deliberation was evaluated positively by the participants. Content and atmosphere of moral case deliberation received high scores, while organizational issues regarding the moral case deliberation sessions scored lower and merit further attention. Respondents indicated that moral case deliberation has the potential to contribute to care practice as relationships among team members improve, more openness is experienced and more understanding for different perspectives is fostered. If moral case deliberation is to be successfully implemented, top-down approaches should go hand in hand with bottom-up approaches. CONCLUSION: The relevance of moral case deliberation for care practice received wide acknowledgement from the respondents. It can contribute to the team's cohesion as mutual understanding for one another's views is fostered. If implemented well, moral case deliberation has the potential to improve care, according to the respondents.

Advance directives, dementia, and withholding food and water by mouth.

People with dementia who are no longer competent have limited control over how their lives end. But an advance directive to withhold food and water by mouth could be used to ensure that one does not live for years in severe dementia. Such directives are arguably already legal.

Impact of the demand for 'proxy assent' on recruitment to a randomised controlled trial of vaccination testing in care homes.

Legal frameworks are in place to protect those who lack the capacity to consent to research, such as the Mental Capacity Act in the UK. Assent is sought instead from a proxy, usually a relative. However, the same legislation may, perversely, affect the welfare of those who lack capacity and of others by hindering the process of recruitment into otherwise potentially beneficial research. In addition, the onus of responsibility is moved from those who know most about the study (ie, the scientific community) to those who know less (the proxies). In this paper, we describe the characteristics of a sample at different stages of the recruitment process of an influenza vaccine-based randomised control trial in elderly care home residents (the FEVER study). 62% (602/968) of potential subjects lacked capacity but only 29% (80/277) of those actually randomised. Older age, being female and living in an Elderly Mentally Ill care home were the only variables associated with lacking capacity. Considering this was a study based in a care home setting where the prevalence of dementia approximates 80%, the trial, like many others, was thus significantly biased. We believe that difficulties seeking proxy assent contributed significantly to this problem. Further thought should be given to how assent to enter research for those who lack capacity should be provided, and we suggest avenues for further discussion such as independent risk/benefit expert panels.

How to avoid and prevent coercion in nursing homes: a qualitative study.

In many Western countries, studies have demonstrated extensive use of coercion in nursing homes, especially towards patients suffering from dementia. This article examines what kinds of strategies or alternative interventions nursing staff in Norway used when patients resist care and treatment and what conditions the staff considered as necessary to succeed in avoiding the use of coercion. The data are based on interdisciplinary focus group interviews with nursing home staff. The study revealed that the nursing home staff usually spent a lot of time trying a wide range of approaches to avoid the use of coercion. The most common strategies were deflecting and persuasive strategies, limiting choices by conscious use of language, different kinds of flexibility and one-to-one care. According to the staff, their opportunities to use alternative strategies effectively are greatly affected by the nursing home's resources, by the organization of care and by the staff's competence.

Sexuality in institutionalized elderly persons: a systematic review of argument-based ethics literature.

BACKGROUND: Admission to a nursing home might challenge the way in which individuals experience their own sexuality, but it does not automatically diminish their need and desire for sexual fulfillment. Despite the fact that sexuality proves to be an intrinsic part of human existence, the sexual expression of geriatric residents remains a sensitive subject for many caregivers and family members. It evokes a variety of ethical issues and concerns, especially when dementia patients are involved. The overall objective of this review was to examine the ethical arguments and concepts about the debate on sexuality within a nursing home environment. METHODS: We conducted a systematic search for argument-based ethics literature focusing on sexuality in institutionalized elderly people. Twenty-five appropriate studies were identified. RESULTS: A thematic analysis of the included literature led us to distinguish two major groups of ethical arguments: (i) principles and (ii) care. Ethics arguments on sexuality in institutionalized elderly are particularly guided by the principle of respect for autonomy and the concomitant notion of informed consent. Arguments related to care were also apparent within the research literature although they received considerably less attention than the arguments related to the principles of respect for autonomy, beneficence, nonmaleficence and justice. CONCLUSIONS: The lack of clarity in the conceptualization of the arguments referred to in the research literature indicates that there is a pressing need for a better defined, more fundamental philosophical-ethical analysis of the values at stake.

Dementia, sexuality and consent in residential aged care facilities.

Sexual self-determination is considered a fundamental human right by most of us living in Western societies. While we must abide by laws regarding consent and coercion, in general we expect to be able to engage in sexual behaviour whenever, and with whomever, we choose. For older people with dementia living in residential aged care facilities (RACFs), however, the issue becomes more complex. Staff often struggle to balance residents' rights with their duty of care, and negative attitudes towards older people's sexuality can lead to residents' sexual expression being overlooked, ignored, or even discouraged. In particular, questions as to whether residents with dementia are able to consent to sexual activity or physically intimate relationships pose a challenge to RACF staff, and current legislation does little to assist them. This paper will address these issues, and will argue that, while every effort should be made to ensure that no resident comes to harm, RACFs must respect the rights of residents with dementia to make decisions about their sexuality, intimacy and physical relationships.