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.

Examining the UK Covid-19 mortality paradox: Pandemic preparedness, healthcare expenditure, and the nursing workforce.

AIM: To examine the UK pandemic preparedness in light of health expenditure, nursing workforce, and mortality rates in and relation to nursing leadership. BACKGROUND: The Global Health Security Index categorized the preparedness of 195 countries to face a biological threat on a variety of measures, producing an overall score. The United States of America and the United Kingdom were ranked 1st and 2nd most prepared in 2019. METHOD: A cross-nation comparison of the top 36 countries ranked by Global Health Security Index score using a variety of online sources, including key data about each nation's expenditure on health and the nursing workforce, and compared these with mortality data for COVID-19. RESULTS: The extent of a country's pandemic preparedness, expenditure on healthcare and magnitude of the nursing workforce does not appear to impact mortality rates at this stage of the pandemic which is something of a paradox. CONCLUSION: It is important that arrangements for dealing with future global pandemics involve a range of agencies and experts in the field, including nurse leaders. IMPLICATIONS FOR NURSING: To achieve the best outcomes for patients, nurse leaders should be involved in policy forums at all levels of government to ensure nurses can influence health policy.

Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy.

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.

The challenges in caring for morbidly obese patients in Intensive Care: A focused ethnographic study.

BACKGROUND: Critically ill morbidly obese patients pose considerable healthcare delivery and resource utilisation challenges. However little is known about the care of these patients in intensive care. OBJECTIVE: To explore medical and nursing practices and attitudes in intensive care when caring for critically ill morbidly obese patients. METHODS: A focused ethnographic approach was adopted. Participant observation of care practices and interviews with intensive care doctors and nurses were undertaken over a four month period. Qualitative analysis was conducted using constant comparison. SETTING: An 18 bedded tertiary intensive care unit in New Zealand. PARTICIPANTS: Sixty-seven intensive care nurses and 13 intensive care doctors involved with the care and management of seven critically ill patients with a body mass index ≥40kg/m2. FINDINGS: Morbidly obese patients present significant physical and language challenges for intensive care practice. The physical shape of morbidly obese patients did not appropriately fit the different equipment used. Staff used specific knowledge of the patient's body size and shape to adapt care practices and keep patients safe and comfortable. There were also specific language challenges where staff expressed concern about what words were most appropriate to use to describe body mass when in the presence of morbidly obese patients. CONCLUSIONS: Bariatric care pathways need to be developed that use more suitable body measurements to inform the use of bariatric equipment. Intensive care staff need to engage in debate about what is acceptable, respectful, and appropriate language in the delivery of bariatric patient care.

How do we enhance undergraduate healthcare education in dementia? A review of the role of innovative approaches and development of the Time for Dementia Programme.

OBJECTIVES: Traditional healthcare education, delivered through a series of time-limited clinical placements, often fails to deliver an understanding of the experiences of those with long-term conditions, a growing issue for healthcare systems. Responses include longitudinal integrated clerkships and senior mentor programmes allowing students' longer placements, continuity of contact and opportunities to learn about chronic illness and patient experience. We review their development and delivery in dementia and present the Time for Dementia (TFD) Programme, a novel 2-year interdisciplinary educational programme. DESIGN: The study design involves a scoping review of enhanced placements in dementia for healthcare professionals in training including longitudinal integrated clerkships and senior mentor programmes and a case study of the development of TFD and its evaluation. RESULTS: Eight enhanced programmes in dementia were identified and seven in the USA. None were compulsory and all lasted 12 months. All reported positive impact from case study designs but data quality was weak. Building on these, TFD was developed in partnership between the Alzheimer's Society, universities and NHS and made a core part of the curriculum for medical, nursing and paramedic students. Students visit a person with dementia and their family in pairs for 2 h every 3 months for 2 years. They follow a semi-structured interaction guide focusing on experiences of illness and services and complete reflective appraisals. CONCLUSIONS: We need interprofessional undergraduate healthcare education that enables future healthcare professionals to be able to understand and manage the people with the long-term conditions who current systems often fail. TFD is designed to help address this need. © 2016 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

Managing risk during care transitions when approaching end of life: A qualitative study of patients' and health care professionals' decision making.

BACKGROUND: Increasing importance is being placed on the coordination of services at the end of life. AIM: To describe decision-making processes that influence transitions in care when approaching the end of life. DESIGN: Qualitative study using field observations and longitudinal semi-structured interviews. SETTING/PARTICIPANTS: Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand. The Supportive and Palliative Care Indicators Tool was used to identify participants with advanced and progressive illness. Patients and family members were interviewed on recruitment and 3-4 months later. Four weeks of fieldwork were conducted in each site. A total of 40 interviews were conducted: 29 initial interviews and 11 follow-up interviews. Thematic analysis was undertaken. FINDINGS: Managing risk was an important factor that influenced transitions in care. Patients and health care staff held different perspectives on how such risks were managed. At home, patients tolerated increasing risk and used specific support measures to manage often escalating health and social problems. In contrast, decisions about discharge in hospital were driven by hospital staff who were risk-adverse. Availability of community and carer services supported risk management while a perceived need for early discharge decision making in hospital and making 'safe' discharge options informed hospital discharge decisions. CONCLUSION: While managing risk is an important factor during care transitions, patients should be able to make choices on how to live with risk at the end of life. This requires reconsideration of transitional care and current discharge planning processes at the end of life.

Ethical dilemmas faced by hospice nurses when administering palliative sedation to patients with terminal cancer.

OBJECTIVE: Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients. METHOD: Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data. RESULTS: Facilitating a "peaceful death" was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be "comfortable," "relaxed," and "calm" at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, "juggling the drugs," "causing the death," sedating young people, the family "requesting" sedation, and believing that hospice is a place where death is hastened. SIGNIFICANCE OF RESULTS: Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.

Dignity in long-term care: An application of Nordenfelt's work.

BACKGROUND: The concept of dignity is recognised as a fundamental right in many countries. It is embedded into law, human rights legislation and is often visible in organisations' philosophy of care, particularly in aged care. Yet, many authors describe difficulties in defining dignity and how it can be preserved for people living in long term care. OBJECTIVES: In this article, Nordenfelt's 'four notions of dignity' are considered, drawing on research literature addressing the different perspectives of those who receive, observe or deliver care in the context of the long-term care environment. METHODS: A review of the literature was undertaken using the terms 'nursing homes', 'residential care' or 'long-term care'. The terms were combined and the term 'human dignity' was added. A total of 29 articles met the inclusion criteria from the United Kingdom (14), United States (2), Australia (1), Sweden (3), Hong Kong (2), Norway (3), Nordic (1), Taiwan (1), Netherlands (1). Ethical Considerations: Every effort has been made to ensure an unbiased search of the literature with the intention of an accurate interpretation of findings. DISCUSSION: The four notions of dignity outlined by Nordenfelt provide a comprehensive description of the concept of dignity which can be linked to the experiences of people living in long-term care today and provide a useful means of contextualising the experiences of older people, their families and significant others and also of staff in long-term care facilities. Of particular interest are the similarities of perspectives of dignity between these groups. The preservation of dignity implies that dignity is a quality inherent in us all. This links directly to the exploration and conclusions drawn from the literature review. Conversely, promoting dignity implies that dignity is something that can be influenced by others and external factors. Hence, there are a number of implications for practice. CONCLUSION: We suggest that two of Nordenfelt's notions, 'dignity of identity' and 'dignity of Menschenwüde', are a common thread for residents, family members and staff when conceptualising dignity within long-term care environments.

An examination of the research priorities for a hospice service in New Zealand: A Delphi study.

OBJECTIVES: Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed "vulnerable" and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand. METHODS: A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, day-care, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n = 10, 18, 9, for rounds 1-3, respectively) volunteers (n = 10, 12, 11); and patients and family carers (n = 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round. RESULTS: At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service. SIGNIFICANCE OF RESULTS: The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

Communicating with older people with dementia.

Being able to communicate with older people with dementia requires a high level of competence in assessment of specific and individual communication challenges and needs of the person. One of the most effective means of assessment and skills development is the use of reminiscence interventions, memory books or life-story work. There is considerable evidence that communication skills can be developed and enhanced through education and skills training. This article aims to invite and encourage readers to reflect on their present knowledgeand skills in communicating with older people with dementia.

Primary healthcare NZ nurses' experiences of advance directives: understanding their potential role.

Advance directives are one aspect of advance care planning designed to improve end of life care. The New Zealand Nurses Organisation released their first mission statement in 2010 concerning advance directives suggesting an increase in the use of these. A burgeoning older population, expected to rise over the next few years, places the primary healthcare nurse in a pivotal role to address the challenges in constructing advance directives. While literature supports the role for primary healthcare nurses in promoting advance directives, no research was found on this role in the New Zealand context. This paper presents results of a qualitative study conducted in New Zealand with 13 senior primary healthcare nurses with respect to their knowledge, attitudes, and experiences of advance directives. Results of the analysis revealed a dynamic process involving participants coming to understand their potential role in this area. This process included reflection on personal experience with advance directives; values and ethics related to end of life issues; and professional actions.

End-of-life care in the patient's home.

BACKGROUND: Providing end-of-life care in a patient's home is challenging, especially if the nurse is from a different ethnic background from the patient. Evidence shows that people from an ethnic minority background often experience poorer end-of-life care due to care providers not understanding their care needs. AIM: To explore the experiences of community nursing staff caring for patients with an ethnic minority background at the end of their life. METHOD: Using a qualitative descriptive approach, 16 semi-structured interviews were conducted and the data was thematically analysed. FINDING: Participants dealt with large tight-knit families, paternalism and controlling behaviours. There was a mistrust of Western palliative medicine. Language barriers and challenges were faced by the nursing staff, resulting in difficult conversations with the families. Different levels of the nursing staff's spiritual/cultural competencies were also identified. The COVID-19 pandemic intensified the challenges. CONCLUSION: This research has shed light on the challenges of individualising end-of-life care in a culturally diverse community in the UK. The nursing staff's cultural/spiritual competencies were challenged.

Developing a clinical academic career pathway in a Community and Mental Health NHS Trust.

Background: Despite growing evidence of the impact that clinical academic (CA) staff have on patient care and clinical practice, there are disproportionately low numbers of nurses, allied health professionals (AHPs) and other healthcare professionals in CA joint roles, compared to their medical colleagues. Aim: To describe the initial development of a CA career pathway for nurses, AHPs and other healthcare professionals in a Community and Mental Health NHS Trust. Methods: Kotter's 8-Step Change Model was used to expand opportunities and research culture across an NHS Trust. Results: A variety of capacity and capability initiatives at different academic levels were created to support CA development and to complement those available externally. These opportunities were underpinned by a research and development strategy, senior leadership buy-in, manager and clinical staff support, and targeted organisation-wide communication. Conclusion: The ongoing development of innovative CA opportunities in the Trust, alongside greater support for staff interested in pursuing CA careers, has resulted in a growing number of individuals successful in developing as CAs. This has led to a growth in research culture in the organisation and a greater understanding of what CA staff can bring to patient care, the clinical service and the wider organisation.

Therapeutic use of cannabis.

Therapeutic cannabis use raises a number of dilemmas for nurses. This article examines the legal, political and ethical challenges raised by the use of cannabis by people with life-limiting or terminal illnesses in their own homes. (Throughout this paper, the term cannabis refers to illegal cannabis unless specified.) A literature review of databases from 1996 was conducted and internet material was also examined. Evidence on the therapeutic use of cannabis suggests it may produce improvements in quality of life, which has led to increased use among people with life-limiting illnesses. The cannabis used is usually obtained illegally, which can have consequences for both those who use it and nurses who provide treatment in the community.

Emergency trauma care during the COVID-19 pandemic: A phenomenological study of nurses' experiences.

OBJECTIVE: This study aimed to explore nurses' experiences in delivering emergency trauma care during the COVID-19 pandemic at a level I trauma centre in Saudi Arabia. METHODS: A qualitative, descriptive phenomenological design was utilised, in which face-to-face, unstructured interviews were carried out with emergency and trauma nurses at a level I trauma centre in Saudi Arabia. The study included nine registered emergency and trauma nurses who were interviewed twice from February to April 2021. The collected data were analysed using Colaizzi's descriptive phenomenological method. RESULTS: The analysis of the data revealed an overarching theme that was about the inevitable change on the ground due to the pandemic and two primary themes, each containing two subthemes: 1 dealing with an interrupted path of care; 1.1 experiencing additional complexity; 1.2 encountering extra demands; 2 optimising the path of care; 2.1 modifying the steps; and 2.2 transforming the system. CONCLUSION: The COVID-19 pandemic imposed change on how trauma patients would be handled and treated. Nurses took an active and critical role in creating another form of change, which helped optimise the path of trauma care and accommodate urgent treatment needs of the injured patients.

Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review.

The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.

'Four walls and a garden': Exploring the experiences of families affected by dementia during the COVID-19 pandemic.

INTRODUCTION: When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. AIMS: In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. METHODS: This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. FINDINGS: Six distinct themes were identified from the inductive analysis: Routine: 'busy life before lockdown'; Isolation: 'four walls and a garden'; Living with restrictions: 'treading on eggshells'; Discovering positives: 'you are in the same boat'; Easing lockdown: 'raring to go'; Heightened uncertainty: 'things have changed'. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. CONCLUSION: Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers.

OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.

Palliative care in Creutzfeldt-Jakob disease: looking back, thinking ahead.

Creutzfeldt-Jakob disease (CJD) is a rare and fatal neurodegenerative disease for which there is no cure. However, it is difficult to diagnose and is unique in that it is both a genetic and transmissible disease. The disease is characterised by symptoms of a rapidly progressive dementia. Palliation is the only treatment and early diagnosis is an important aspect in relation to gaining speedy access to palliative and end-of-life care services. People with CJD may be cared for in a diversity of settings including; general hospital wards, neurological units, hospices; care homes and in their own home. Management of physical and psychosocial symptoms and dealing with family bereavement is complex and challenging. Due to the complexity of the physical symptoms input from clinicians with palliative care expertise is an important consideration. Given transmission risk and the latent incidence of infection in the general population, following the emergence of variant CJD; plus the recent hypothesis of a potential relationship between immune responses to COVID-19 and the acceleration of preclinical or evident neurodegenerative disease, there is a need for renewed interest in research in this field. Over the past 20 years, many thousands of articles have been published on CJD. These have been predominately in the medical and science literature and very few publications have addressed the nursing care of persons and families dealing with CJD. There is a need for renewed interest in the management of the disease by supportive and palliative care services.

'This Adds Another Perspective': Qualitative Descriptive Study Evaluating Simulation-Based Training for Health Care Assistants, to Enhance the Quality of Care in Nursing Homes.

Much of the UK's ageing population lives in care homes, often with complex care needs including dementia. Optimal care requires strong clinical leadership, but opportunities for staff development in these settings are limited. Training using simulation can enable experiential learning in situ. In two nursing homes, Health Care Assistants (HCAs) received training in clinical communication skills (Situation-Background-Assessment-Recommendation Education through Technology and Simulation, SETS: group training with an actor simulating scenarios); and dementia (A Walk Through Dementia, AWTD: digital simulation, delivered one-to-one). In this qualitative descriptive study, we evaluated the potential of this training to enhance HCAs' clinical leadership skills, through thematic analysis of 24 semi-structured interviews with HCAs (before/after training) and their managers and mentors. Themes were checked by both interviewers. HCAs benefitted from watching colleagues respond to SETS scenarios and reported greater confidence in communicating with registered healthcare professionals. Some found role-play participation challenging. AWTD sensitised HCAs to the experiences of residents with dementia, and those with limited dementia experience gained a fuller understanding of the disease's effects. Staffing constraints affected participation in group training. Training using simulation is valuable in this setting, particularly when delivered flexibly. Further work is needed to explore its potential on a larger scale.