As the world population is rapidly aging, stakeholders must address the care of the elderly with great concern. Also, loss of dignity is often associated with aging due to dementia, mobility problems and diminished functional autonomy. However, dignity is a polysemic term that is deemed useless by some ethicists. To counter this claim, we propose four concepts to define it better and make use accurately of this notion. These are human dignity, dignity of identity, dignities of excellence and attributed (...) dignities. Finally, we explain the importance of solicitude and human dignity in the care of the elderly. This will ensure the respect, friendship and dignity of the elderly in providing geriatric ethical care. (shrink)

Although a large body of literature exists propounding the importance of space in aged care and care of the older person with dementia, there is, however, only limited exploration of the ‘acute care space’ as a particular type of space with archetypal constraints that maybe unfavourable to older people with cognitive impairment and nurses wanting to provide care that is person‐centred. In this article, we explore concepts of space and examine the implications (...) of these for the delivery of care to older people who are cognitively impaired. Our exploration is grounded in theorisations of space offered by key geographers and phenomenologists, but also draws on how space has been constructed within the nursing literature that refers specifically to acute care. We argue that space, once created, can be created and that nursing has a significant role to play in the process of its recreation in the pursuit of care that is person‐centred. We conclude by introducing an alternative logic of space aimed at promoting the creation of more salutogenic spaces that invokes a sense of sanctuary, safeness, and inclusion, all of which are essential if the care provided to the older person with cognitive impairment is apposite to their needs. The concept of ‘person‐centred space’ helps to crystallize the relationship between space and person‐centred care and implies more intentional manipulation of space that is more conducive to caring and healing. Significantly, it marks a return to Nightingale's wisdom, that is, to put the person in the best possible conditions for nature to act upon them. (shrink)

In this article, we sought reconciliation between the “body‐as‐representation” and the “body‐as‐experience,” that is, how the body is represented in discourse and how the body of older people with cognitive impairment is experienced. We identified four contemporary “technologies” and gave examples of these to show how they influence how older people with cognitive impairment are often represented in acute care settings. We argued that these technologies may be mediated further by discourses of ageism and ableism which can (...) potentiate either the repressive or productive tendencies of these technologies resulting in either positive or negative care experiences for the older person and/or their carer, including nurses. We then provided examples from research of embodied experiences of older people with dementia and of how nurses and other professionals utilized their inter‐bodily experiences to inform acts of caring. The specificity and individuality of these experiences were more conducive to positive care experiences. We conclude the article by proposing that the act of caring is one way nurses seek to reconcile the “body‐as‐representation” with the “body‐as‐experience” to mitigate the repressive effects of negative ageism and ableism. The act of caring, we argue, is the essence of caring enacted through the provision of person‐centred care which evokes nurses to respond appropriately to the older person's “otherness,” their “variation of being” while enabling them to enact a continuation of themselves and their own version of normality. (shrink)

The aim of this analysis was to examine the concept of time to rejuvenate and extend existing narratives of time within the nursing literature. In particular, we hope to promote a new trajectory in nursing research and practice which focuses on time and person‐centred care, specifically of older people with cognitive impairment hospitalized in the acute care setting. We consider the explanatory power of concepts such as clock time, process time, fast care, slow care (...) and time debt for elucidating the relationship between ‘good care’ and ‘time use’. We conclude by offering two additional concepts of time, plurotemporality and person‐centred time (PCT) which we propose will help advance of nursing knowledge and practice. Nurse clinicians and researchers can use these alternative concepts of time to explore and describe different temporal structures that honour the patient's values and preferences using experiential, observation‐based nursing research approaches. (shrink)

Person‐centred care is a relatively new orthodoxy being implemented by modern hospitals across developed nations. Research demonstrating the merits of this style of care for improving patient outcomes, staff morale and organizational efficiency is only just beginning to emerge. In contrast, a significant body of literature exists showing that attainment of person‐centred care in the acute care sector particularly, remains largely aspirational, especially for older people with cognitive impairment. In previous articles, we argued (...) that nurses work constantly to reconcile prevailing constructions of time, space, relationships, the body and ethics, to meet expectations that the care they provide is person‐centred. In this article, we explore key concepts of neo‐liberal thought which forms an important back‐story to the articles. Economic concepts, “efficiency” and “freedom” are examined to illustrate how nurses work to reconcile both the repressive and productive effects of economic power. We conclude the article by proposing a new research agenda aimed at building a more nuanced understanding of the messy actualities of nursing practice under the influences of neo‐liberalism, that illuminates the compromises and adaptations nurses have had to make in response to economic power. (shrink)

Relationships are central to enacting person‐centred care of the older person with cognitive impairment. A fuller understanding of relationships and the role they play facilitating wellness and preserving personhood is critical if we are to unleash the productive potential of nursing research and person‐centred care. In this article, we target the acute care setting because much of the work about relationships and older people with cognitive impairment has tended to focus on relationships (...) in long‐term care. The acute care setting is characterized by archetypal constraints which differentiate it from long‐term care, in terms of acuity and haste, task‐orientated work patterns and influence from “the rule of medicine,” all of which can privilege particular types of relating. In this article, we drew on existing conceptualizations of relationships from theory and practice by tapping in to the intellectual resources provided by nurse researchers, the philosophy of Martin Buber and ANT scholars. This involved recounting two examples of dyadic and networked relationships which were re‐interpreted using two complementary theoretical approaches to provide deeper and more comprehensive conceptualizations of these relationships. By re‐presenting key tenets from the work of key scholars on the topic relationships, we hope to hasten socialization of these ideas into nursing into the acute care setting. First, by enabling nurses to reflect on how they might work toward cultivating relationships that are more salutogenic and consistent with the preservation of personhood. Second, by stimulating two distinct but related lines of research enquiry which focus on dyadic and networked relationships with the older person with cognitive impairment in the acute care setting. We also hope to reconcile the schism that has emerged in the literature between preferred approaches to care of the older person with cognitive impairment, that is person‐centred care versus relationship‐centred care by arguing that these are complementary rather than mutually exclusive and can be brought together in one theoretical framework acknowledging personhood as relational in essence. (shrink)

Despite similar health problems, older persons show different care seeking behaviours for a variety of reasons. The aim of this study was to identify motives underlying the attitudes of older persons to seek nursing care and to develop a theoretical rationale which allows viewing their mutual interaction. Theory development according to Walker and Avant was used as a method to derive a model from the reviewed literature. Six categories were identified that may influence seeking of nursing (...) care: perceived threat, disposition, external options & barriers, current coping abilities, influence of significant others, and outcome value. Findings do not allow determination of factors that may predict care seeking attitude but provide a loosely structured conceptual model for culture specific investigations. Qualitative studies guided by the model should be conducted in order to develop testable theories of care seeking for different cultures and settings. (shrink)

The ageing population is increasing worldwide with an increase in chronic disorders. At the same time, person‐centred care has become a policy within both health and social care. To facilitate coordination and collaboration and integrate the older adult's perspective in the decision‐making process the collaborative care planning process with the development of a written care plan can be used. In this study, the result of an interpreted analysis of four empirical studies of the collaborative (...) care planning as a person‐centred practice will be discussed and reflected on. A framework based on the French philosopher Paul Ricoeur's little ethics was used in the synthesis of the studies. The findings revealed two common threads: personhood and power asymmetry. Both challenges in achieving a person‐centred collaborative care planning. Ricoeur's dialogical thinking and description of a person served as an underpinning in discussing and reflecting upon the findings of the interpreted synthesis. Collaborative care planning is a complex process. However, Ricoeur's philosophy contributed to a greater understanding of the collaborative care planning as a person‐centred practice and accentuated that ethics, human values, and the older adults and care partners perspectives need to be given the same importance and considerations as the medical and social sciences perspectives for the collaborative care planning process to truly become person‐centred. (shrink)

Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for (...) older persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543. (shrink)

With robots being introduced into caregiving, particularly for older persons, various ethical concerns are raised. Among them is the fear of replacing human caregiving. While ethical concepts like well-being, autonomy, and capabilities are often used to discuss these concerns, this paper brings forth the concept of social dignity to further develop guidelines concerning the use of robots in caregiving. By social dignity, we mean that a person’s perceived dignity changes in response to certain interactions and experiences with other (...) persons. In this paper, we will first present the concept of social dignity, and then identify a niche where robots can be used in caregiving in an ethical manner. Specifically, we will argue that, because some activities of daily living are performed in solitude to maintain dignity, a care recipient will usually prefer robotic assistance instead of human assistance for these activities. Secondly, we will describe how other philosophical concepts, which have been commonly used to judge robotic assistance in caregiving for the elderly so far, such as well-being, autonomy, and capabilities, are less useful in determining whether robotic assistance in caregiving is ethically problematic or not. To conclude, we will argue that social dignity offers an advantage to the other concepts, as it allows to ask the most pressing questions in caregiving. (shrink)

Based on an ethnographic study in a Danish residential care center, this article shows how the interplay of a sensor-floor technology and currently influential values of person-centeredness, privacy, and security in care transforms care work and care interactions between residents and care workers. Based on an understanding of care as realized in a heterogeneous collective of human and nonhuman actors, this article illustrates how new modes of monitoring and interpreting residents’ care needs (...) at a distance arise, and how a new organization of work focusing on quick and responsive care is established. These new care practices lead to conflicts between the values of privacy and security, to ambivalent experiences among care workers of simultaneously increased security and insecurity in work, and, paradoxically, also often to a decentering rather than person-centering of care. Instead of accommodating simultaneous compliance to the values of privacy, security, and person-centeredness, the use of the sensor-floors makes the tensions between these values continuously and loudly present in daily care practices. (shrink)

Key commentators on person‐centred care have described it as a “new ethic of care” which they link inextricably to notions of individual autonomy, action, change and improvement. Two key points are addressed in this article. The first is that few discussions about ethics and person‐centred are underscored by any particular ethical theory. The second point is that despite the espoused benefits of person‐centred care, delivery within the acute care setting remains largely aspirational. Choices (...) nurses make about their practice tend to comply more often with prevailing norms than those championed by person‐centred care. We draw on elements of work by moral philosopher Løgstrup and Foucault to provide insight into nurses’ ethical conduct and ask why nurses would want to act otherwise, when what they think and do is viewed as normal, or think and act otherwise if doing so is seen within the organization as transgressive? To address these more specific questions, we discuss them in relation to the following constructs: the ethical demand, sovereign expressions of life and parrhêsia. We conclude by arguing that a ethical theoretical framework enables nurses to increase their perceptibility and appreciation of the ethical demand particularly those emanating from incommensurability between organizational norms and the norms invoked by person‐centred care. We argue that nurses’ responses to the ethical demand by way of parrhêsia can be an important feature of intra‐organizational reflexivity and its transformation towards the delivery care that is more person‐centred, particularly for older people with cognitive impairment. We conclude the article by highlighting the implications of this for nursing education and research. (shrink)

Body care is considered a key aspect of nursing and imperative for the health, wellbeing, and dignity of older people. In Scandinavian countries, body care as a professional practice has undergone considerable changes, bringing new understandings, values, and dilemmas into nursing. A systematic mapping review was conducted with the aims of identifying and mapping international nursing research on body care of older people in different institutionalized settings in the healthcare system and to critically discuss the (...) dominant assumptions within the research by adapting a problematization approach. Most identified papers reported on empirical research with a biomedical approach focusing on outcome and effectiveness. Conceptual papers, papers with a focus on the perspectives of the older people, or contextual and material aspects were lacking. The research field is dominated by four dominant assumptions: Body care as an evidence‐based practice, body care as a relational ethical practice, the body as a body‐object and a body‐subject, the objects in the body care practices as nonrelational materialities. Given the complexities of professional body care practices, there is a need for other research designs and theoretical perspectives within nursing that expand our understanding of body care taking into consideration the multiple social and material realities. (shrink)

Caring for older persons is both rewarding and consuming. Work with older people in Finland has been shown to be more burdensome than in the other Nordic countries. The aim of this study was to try out a Finnish version of the Stress of Conscience Questionnaire (SCQ) and explore stress of conscience in staff caring for older persons in Finland. The data were collected from the nursing staff (n = 350) working with older people in health (...) centre wards, municipal and private nursing homes, and municipal and private dementia care units in Finland. It emerged clearly from the results that Finnish nursing staff mostly felt that they did not have enough time to provide good care to patients, and this gave them a troubled conscience. They also felt that the demanding work taxed their energy, a consequence being that they could not give their own families and loved ones the attention they would have liked. (shrink)

Background: As frail older people might have difficulties in expressing themselves, their needs are often interpreted by others, for example, by significant others, whose information health care staff often have to rely on. This, in turn, can put health care staff in ethically difficult situations, where they have to choose between alternative courses of action. One aspect that might be especially difficult to express is that of existential loneliness. We have only sparse knowledge about whether, and in (...) what way, the views of frail older persons and their significant others concerning existential loneliness are in concordance. Objective: To contrast frail older persons’ experiences with their significant others’ perceptions of existential loneliness. Methods: A case study design was chosen for this study. Individual interviews with frail older persons and interviews with their significant others, as well as field notes, served as a basis for the study. A thematic analysis was used to interpret data. Ethical considerations: This study was conducted in accordance with the principles of research ethics. Findings: The findings showed three themes: Meaningless waiting in contrast to lack of activities, Longing for a deeper connectedness in contrast to not participating in a social environment and Restricted freedom in contrast to given up on life. Discussion: Knowledge about the tensions between older persons’ and their significant others’ views of existential loneliness could be of use as a basis for ethical reflections on the care of older people and in the encounter with their significant others. Conclusion: It is of importance that health care professionals listen to both the frail older person and their significant other and be aware of whose voice that the care given is based on, in order to provide care that is beneficial and not to the detriment of the older person. (shrink)

Globally, healthcare has become dominated by women nurses. Gender is also known to impact the way people are cared for in various healthcare systems. Considering gender from the perspective of how lived bodies are positioned through the structural relations of institutions and processes, this systematic review aims to explore the meaning of gender in the caring relationship between the nurse and the older person through a synthesis of available empirical data published from 1993 to 2022. CINAHL, PUBMED, EMBASE (...) and Web of Science were searched from the beginning of each database's temporal range, and PRISMA guidelines were used for the screening, reviewing and selection processes of available records. A thematic synthesis of the available data resulted in three analytical themes: (i) vulnerability of the gendered body, (ii) norms and values related to gender and sexuality and (iii) balancing closeness and distance in the nurse‐patient relationship. These themes are intertwined and represent different aspects of gender meaning in the nurse–patient relationship. This research shows that gender, through its influence on the gendered body, its relationship with power dynamics in the caring process, and its intersection with dimensions of identity, has a significant meaning for the experienced vulnerability in the nurse–patient relationship. This has implications for the well‐being and sense of dignity of the older person as well as the nurse. (shrink)

The aim of this thematic literature review is to explore nurses' perceptions of ethical issues in the care of older people. Electronic databases were searched from September 1997 to September 2007 using specific key words with tight inclusion criteria, which revealed 17 primary research reports. The data analysis involved repeated reading of the findings and sorting of those findings into four themes. These themes are: sources of ethical issues for nurses; differences in perceptions between nurses and patients/relatives; nurses' (...) personal responses to ethical issues; and the patient—nurse relationship. The findings reveal that ageism is one of the major sources of the ethical issues that arise for nurses caring for older people. Education and organizational change can combat ageist attitudes. Wider training is required in the care of older people, workplace skills, palliative care and pain management for older people. The demands of a changing global demography will necessitate further research in this field. (shrink)

Background: Meaning in life of older persons is related to well-being, health, quality of life, and “good life.” However, the topic is scarcely covered in nursing literature. Objective: The aim of this integrative review for nurses is to synthesize knowledge from scholarly literature to provide insight into how older persons find meaning in life, what are influencing circumstances, and what are their sources of meaning. The review serves as a starting point for including meaning in life of (...) class='Hi'>older persons as a major concern for nurses in their role as health promoters. Method: An integrative review was performed including empirical research literature and texts on theoretical perspectives. Ethical consideration: Researches agree with ethical codes for research of universities in the Netherlands. For literature reviews no additional procedures are necessary according to Dutch law. Findings: A total of 44 heterogeneous texts were included in this review. Finding meaning in life is challenging for older persons. Older persons find meaning through a developmental process, by creating and discovering. Meaning in life is found in connection with self and others. Health, living together, high socio-economic status, social relations, activities, and religion are associated with experiencing meaning in later life. The main source of meaning in life of older persons is human relationships. Other sources of meaning in life vary by age and culture. Discussion: The review provides insight into meaning in life of older persons. There are several gaps in knowledge: literature is culturally biased, research on discovery of meaning and daily meaning is limited, and research from a nursing perspective is lacking. In practice, nurses have many opportunities to attune to meaning in life of patients. Further development of competence and training are needed. Conclusion: Older persons find meaning in life through different processes. Meaning in life is associated with the circumstances old persons live in. Human relationship is the major source of meaning. The knowledge from this review is a necessary knowledge base for nurses to include meaning in life of older patients in care. Further research is needed to explore the role of nurses. (shrink)

Organizational changes are common in elder care today. Such changes affect caregivers, who are essential to providing good quality care. The aim of the present study was to illuminate caregivers’ experiences of working in elder care while under threat of organizational change and termination notice. Qualitative content analysis was used to examine interview data from 11 caregivers. Interviews were conducted at three occasions during a two‐year period. The findings show a transition in their experiences from ‘having a (...) professional identity and self‐confidence’, to ‘being a professional in a threatening situation caused by someone else’ and to ‘struggling to adapt to a changed working environment as a person and a professional’. The caregivers experienced a loss of pride and satisfaction. Previous literature indicates that this may have consequences for the quality of care and that employees may be at risk of negative health effects. However, the caregivers continued to struggle, doing their best to complete their duties. The study has implications for high‐level decision‐makers, managers and caregivers in similar work–life situations in that it deals with factors that facilitate or impede similar transitions. (shrink)

Objective: To measure the stability of life-sustaining treatment preferences amongst older people and analyse the factors that influence stability. Design: Longitudinal cohort study. Setting: Primary care centres, Granada (Spain). Eighty-five persons age 65 years or older. Participants filled out a questionnaire with six contexts of illness (LSPQ-e). They had to decide whether or not to receive treatment. Participants completed the questionnaire at baseline and 18 months later. Results: 86 percent of the patients did not change preferences. Sex, (...) age, marital status, hospitalisation, and self-perception of health and pain did not affect preferences. Morbidity and the death of a relative did. Conclusion: Stability of preferences of older persons in relation to end-of-life decisions seems to be more probable than instability. Some factors, such as the death of a relative or the increase in morbidity, can change preferences. These findings have implications for advance directives (ADs) and advance care planning. (shrink)

This qualitative study investigated the personal and professional stances of 40 health and social care professionals confronted with assisted suicide of older persons living in nursing homes or supported by social welfare or home care and support services in French-speaking Switzerland. Requests of assisted suicide triggered questions with regard to the professional mission, the quality of accompaniment, values, and ethical principles. Four types of stances emerged from the analysis performed according to the principles of the grounded theory: (...) favorable in principle, professional compromise, personal compromise, and opposed in principle. Each stance results from the combination of several dimensions: personal or professional concordance or compatibility with assisted suicide; implication in, and impact of, the process; appreciation of the process; and satisfaction with the resources at disposal. The differentiated stances adopted by professionals depend largely on their way of interpreting their mission, deontology, and the relationship to the older person. (shrink)

The COVID-19 pandemic has exposed the many challenges and difficulties of healthcare systems caring for older frail people. This public health crisis has indeed jeopardised the concept of the welfare state, in particular the right of older people to uncompromised healthcare. Together with the clinical challenges facing the geriatric patient and the organisational difficulties of the healthcare systems, sociocultural factors may have also played a substantial role in the strategies that countries have applied in coping with the pandemic. (...) In this opinion article, we report attitudes towards the older populations of two countries, Italy and Israel, during the COVID-19 pandemic as viewed through the looking-glass of the media. (shrink)

This article presents Mencius' concept of human dignity in the Chinese Confucian moral tradition, focused on the context of long-term care. The double nature of Mencius' notion of human dignity as an intrinsic quality of human beings qua being human is analyzed and contrasted with the dominant Western account of human dignity as grounded in personhood. Drawing on the heuristic force of an interview with an elder person in Hong Kong, the insights of the Mencian theory of human (...) dignity are used to provide a moral foundation for long-term care for elder persons in a context of diminishing personhood and shrinking autonomy. (shrink)

This article presents Mencius' concept of human dignity in the Chinese Confucian moral tradition, focused on the context of long-term care. The double nature of Mencius' notion of human dignity as an intrinsic quality of human beings qua being human is analyzed and contrasted with the dominant Western account of human dignity as grounded in personhood. Drawing on the heuristic force of an interview with an elder person in Hong Kong, the insights of the Mencian theory of human (...) dignity are used to provide a moral foundation for long-term care for elder persons in a context of diminishing personhood and shrinking autonomy. (shrink)

Introduction Two ethical challenges of nursing home nurses during the COVID-19 pandemic in Sweden are discussed in this paper. Background Historically, the nurse’s primary concern is for the person who is ill, which is the core of nurses’ moral responsibility and identity. In Sweden, person-centered care is generally deemed important in nursing older nursing home residents. Objective To chart moral responsibilities of nursing home nurses in two cases involving older residents during the COVID-19 pandemic in (...) Sweden. Methods We used Margaret Urban Walker’s framework for moral responsibilities and the International Council of Nurses (ICN) code of ethics for nurses (2021) for our normative analysis. Ethical considerations Written and verbal consent was obtained before the interviews, and information was given that participation was entirely voluntary and possible to cancel at any time before the work was published. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to this research project (Dnr. 2020-05649). Findings Case #1: a palliative older nursing home resident who was coercively tested for COVID-19, and case #2: a COVID-19–infected resident with dementia who was isolated using sedation. The decision that was finally made in the respective case was analyzed in the light of either consequentialist/utilitarian or non-consequentialist/deontological reasons. Discussion Empowerment of nurses as moral agents is required for the application of practical wisdom in the balancing of different care relationships (responsibilities), moral identities (professional virtues), and competing moral values. This requires resources and opens possibilities for profound ethical reflection in nursing education and at work. Conclusion During the COVID-19 pandemic, the moral and professional responsibility of nursing home nurses to deliver person-centered care was sometimes problematically abandoned in favor of a more utilitarian manner of ethical decision-making. (shrink)

McGovern, Kevin The Catholic bishops of England and Wales have issued a guide to the spiritual care of the dying person. It reminds us that spiritual care is an essential part of holistic palliative care, and that every health professional has a role to play in the provision of spiritual care.

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. (...) A shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

In Decent People, Norman Care explores how we may understand and be reconciled to the fragility of our moral nature. In his highly original vision of what it means to be a decent person, Care claims that our moral-emotional nature pressures us to seek relief from moralized pain - pain that comes from our awareness of our own wrongdoing, the suffering of current or future people, and our experience of indifference to moral imperatives. Care argues that (...) decent people are neither 'pure' nor self-righteous and that they are vulnerable to the need for forgiveness. Decent people may take morality seriously, but they are not guaranteed success at its challenges. (shrink)

Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. Physicians are the locus of decision making for persons with dementia. It is the responsibility of the physician to assure that the surrogate understands the nature and trajectory of the disease and then to elicit the desired goal of care. Physicians need to ascertain whether any advance directives are available, and if so, whether they apply to the (...) situation of advanced dementia. Finally, physicians should help surrogates understand how the goals of care are best translated into practice. When the goal is comfort, this is achieved by assuring dignity, minimizing suffering, and promoting caring. In general, comfort should be the default goal of care, best implemented through palliative care or hospice. (shrink)

Advance care planning is a voluntary process whereby individual preferences, values and beliefs are used to aid a person in planning for end-of-life care. Currently, there is no local instrument to assess an individual’s awareness and attitude towards advance care planning. This study aimed to develop an Advance Care Planning Questionnaire and to determine its validity and reliability among older people in Malaysia. The Advance Care Planning Questionnaire was developed based on literature review. (...) Face and content validity was verified by an expert panel, and piloted among 15 participants. Our study was conducted from October 2013 to February 2014, at an urban primary care clinic in Malaysia. Included were those aged >50 years, who could understand English. A retest was conducted 2 weeks after the first administration. Participants from the pilot study did not encounter any problems in answering the Advance Care Planning Questionnaire. Hence, no further modifications were made. Flesch reading ease was 71. The final version of the Advance Care Planning Questionnaire consists of 66 items: 30 items were measured on a nominal scale, whilst 36 items were measured on a Likert-like scale; of which we were only able to validate 22 items, as the remaining 14 items were descriptive in nature. A total of 245 eligible participants were approached; of which 230 agreed to participate. Factor analysis on the 22 items measured on a Likert-scale revealed four domains: “feelings regarding advance care planning”, “justifications for advance care planning”, “justifications for not having advance care planning: fate and religion”, and “justifications for not having advance care planning: avoid thinking about death”. The Cronbach’s alpha values for items each domain ranged from 0.637–0.915. In test-retest, kappa values ranged from 0.738–0.947. The final Advance Care Planning Questionnaire consisted of 63 items and 4 domains. It was found to be a valid and reliable instrument to assess the awareness and attitude of older people in Malaysia towards advance care planning. (shrink)

The aim of this study was to elucidate municipal night registered nurses’ (RNs) experiences of the meaning of caring in nursing. The research context involved all night duty RNs working in municipal care of older people in a medium-sized municipality located in central Sweden. The meaning of caring in nursing was experienced as: caring for by advocacy, superior responsibility in caring, and consultative nursing service. The municipal night RNs’ experience of caring is interpreted as meanings in paradoxes: ‘being (...) close at distance’, the condition of ‘being responsible with insignificant control’, and ‘being interdependently independent’. The RNs’ experience of the meaning of caring involves focusing on the care recipient by advocating their perspectives. The meaning of caring in this context is an endeavour to grasp an overall caring responsibility by responding to vocational and personal demands regarding the issue of being a RN, in guaranteeing ethical, qualitative and competent care for older people. (shrink)

Older people enter the final phases of their lives with well‐established habits and rituals, some of which might be or become substance abuse. This inquiry focused on the relationship between habits, rituals, and the compulsive addictive behaviours evident in older persons' substance abuse. Habits and rituals, examined as adaptive and limiting functions in older persons, revealed changes in autonomy, social inclusion, and emotional responses to such changes as older persons experience declining energy reserves and physical debilities. (...) Older persons' ebbing sense of control and passionate responses to change illustrate the perennial struggle between the will and emotions when habits and rituals transform to compulsive addictive behaviours. Two concepts, germane to this struggle both in older persons' addictive behaviours and nurses' response, emerged from this inquiry: temperance, a balance between the will's freely chosen actions and passionate desire, and discipline, the means to achieve such balance. The focused attention demanded in discipline can be realized in spiritual exercises and daily care of the soul. Disciplined actions engage the older persons' imaginative capacities to manage and abandon the self in goals consistent with end‐of‐life issues: meaningful fulfillment of human potential and the need for daily joy and pleasure in living the final years. (shrink)

The advance in Internet of Things technology has increased the opportunities for a healthcare system design, which is an urgent need owing to the growth in population among the older adults in many countries. This requires giving thought to the kind of innovative technological design methods that can find suitable solutions for home care. The application of Health Smart Homes by means of the technologies of the Internet of Things, can be used to support rehabilitation treatment and help (...) the senior citizens to understand the importance of taking measures to maintain a healthy standard of living that can meet their needs. The aim of this article is to develop and assess a design method for the following purposes: to determine and map out the physical and emotional state of the home care users, such as senior citizens; to implement a participatory design that includes the user within its social, psychological and therapeutic context; to explore the flexible method when applied to older users; to provide a way for the users to be “personalized” through a wide range of solutions that involve analyzing the behavioral patterns of different individuals in a standardized manner and to define a set of smart technologies for each problem and senior citizen. This article sets out a collaborative method called FlexPersonas, which is employed for the flexible mapping of users and to improve decision-making with the support of Internet of Things technologies. In this context, computing systems can identify the behavior of the user and issue warnings to the Carers about any abnormal event. Studies with an interdisciplinary team point out the potential and drawbacks of the method. (shrink)

America is aging. But even more striking than the rise in the proportion of the population over age 65 is the unprecedented number of individuals who are living into their eighties and nineties. While many people remain robust well into advanced age, the dramatic increase in the number of the oldest old has brought with it an epidemic of Alzheimer’s disease and other dementias. Dementia is a highly prevalent condition — currently 5.4 million Americans have Alzheimer’s disease, a number which (...) may rise to 16 million by 2050 if there is no breakthrough in the prevention or treatment of the disease — but it disproportionately affects those over age 85, striking between one-third and one-half of this cohort. Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. (shrink)

The phrase ‘person‐centred care’ (PCC) reminds us that the fundamental philosophical goal of caring for people is to uphold or promote their personhood. However, such an idea has translated into promoting individualist notions of autonomy, empowerment and personal responsibility in the context of consumerism and neoliberalism, which is problematic both conceptually and practically. From a conceptual standpoint, it ignores the fact that humans are social, historical and biographical beings, and instead assumes an essentialist or idealized concept of personhood (...) in which a person is viewed as an individual static object. From a practical standpoint, the application of such a concept of personhood can lead to neglect of a person's fundamental care needs and exacerbate the problems of social inequity, in particular for older people and people with dementia. Therefore, we argue that our understanding of PCC must instead be based on a dynamic concept of personhood that integrates the relevant social, relational, temporal and biographical dimensions. We propose that the correct concept of personhood in PCC is one in which persons are understood as socially embedded, relational and temporally extended subjects rather than merely individual, autonomous, asocial and atemporal objects. We then present a reconceptualization of the fundamental philosophical goal of PCC as promoting selfhood rather than personhood. Such a reconceptualization avoids the problems that beset the concept of personhood and its application in PCC, while also providing a philosophical foundation for the growing body of empirical literature that emphasizes the psychosocial, relational, subjective and biographical dimensions of PCC. (shrink)

The aim of this study was to illuminate the meaning of professional carers’ experiences in caring situations when a conflict of interest arises with the older person receiving care. The findings reveal the complexity of the carers’ ambivalence when facing a conflict of interest, weighing up between the older persons’ right to self-determination and external demands. The carers are alone in their ambivalence, and the conclusion is that they need help and support to be more present (...) in the encounter. The implication for this study is to focus on care as a person-centered practice and to focus on people as interdependent on support carers to maintain older people’s right to self-determination in the relationship. (shrink)

This article presents a reflexive account by way of a critical interpretive review of the literature pertaining to falls of older people with cognitive impairment who have been hospitalised in an acute care setting. A key aim of this review was to use thematic analysis and problematisation to challenge assumptions underpinning the current falls literature and to bring into consideration alternate foci of research and new approaches to falls research. An innovative approach is used to generate descriptive and (...) interpretive summaries of the literature which are presented graphically to reveal the prevailing themes and assumptions within. It is argued that currently, falls research in the context of cognitive impairment is constrained by scientism. Meta‐paradigmatic approaches, which have the potential to provide a better understanding of why falls may or may not occur among this particular subgroup of older people, are proposed as an alternative. (shrink)

There has been a radical turn towards ideals of patient autonomy and person-centred care, and away from historically entrenched forms of medical paternalism, in the last 50 years of nursing practice. However, along the way, some shades of grey between the areas of ideal patient participation and of outright patient non-participation have been missed. The current article constitutes an exploratory proof-of-concept study of the real-world traction of a distinction-straddling concept of ‘constrained participation’ and its two sub-concepts of ‘fought-for (...) participation’ and ‘forced-to participation’. In order to concretise these additions to the conceptual terrain of person-centred participation and its anti-theses, we apply them to themes in the care of vulnerable older adults. In the final section, we close by eliciting some characterological, educational and clinical implications of adding these new tools also to the conceptual repertoire of nursing practice and education. (shrink)

This study focuses on issues of elder abuse in residential settings. Violation of ethical principles is shown in the results of this quantitative study aimed at defining the extent, nature and causes of such abuse by employees’ unethical conduct towards clients in senior homes (i.e. residential nursing homes) in the Moravian-Silesian region of the Czech Republic. The research sample comprised 454 employees and 488 clients from 12 residential homes for older people. The data were collected from interviews with clients, (...) who also received a questionnaire concerning their satisfaction with the institution. Two questionnaires were administered to the employees, one based on a pilot qualitative study and a second to investigate burnout. Outcomes were assessed according to the extent and form of elder abuse, the causes of elder abuse and the violation of basic ethical principles. The responses, in particular those of employees, revealed both psychological and physical abuse of older clients, and thus violation of two basic principles: respect for the person and non-maleficence. The group at risk of elder abuse comprised aggressive and dissatisfied clients, as well as those with mental problems and dementia. The employees most at risk of being abusers were those who had been employed in institutional care for more than five years, had inadequate knowledge about social services and suffered from burnout. The prevention of elder abuse is recommended to be through education focused on ethical principles, increasing employees’ satisfaction by promoting a friendly and safe organizational culture, and providing adequate working conditions. (shrink)

There is always a debate around consent in the context of research. Given the expansion of different approaches to qualitative research within dementia care, there is increasing consideration around consent in this context; particularly in research concerning the experiences of living with dementia and the care of persons with dementia. Specifically there is a drive to directly involve persons with dementia as they offer specific expertise concerning living with dementia. Additionally, capacity legislation strengthens the case for ensuring that (...) persons with dementia are actively enabled to make their own decisions for as long as possible. This paper discusses an approach and method that can enable more persons who are living with dementia to participate in some types of research should they want to. Currently, most researchers rely on an extension of the traditional competency-based informed consent method and/or proxy consent or assent. However, related to the development of so-called person-centred and participatory research in dementia, there are now a number of academic publications on approaches and practical methods of ‘inclusionary’ consent. This paper considers the broader contextual influences on inclusionary consent and outlines the key aspects of such approaches based on the development of one specific method for including persons with dementia in consent processes. The method is based on the premise that, for persons with a dementia, informed consent becomes increasingly redundant and consequently exclusionary to them as persons. And even where capacity is said to no longer exist, persons with dementia are often able to make choices and make known their preferences about participating in research where the consent process is made specifically dementia-sensitive. Ethics committees can facilitate researchers both by supporting them when they need to and want to include persons with dementia in gerontological research and by challenging them to ensure that participation is genuine and starts with process consent. (shrink)

ObjectivesTo investigate which of two sources of information about an older adult’s wishes—choices made in an advance directive or proxy’s opinion—provides better insight into the older adult’s preferences measured in hypothetical clinical situations involving decisional incapacity.MethodsSecondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express (...) healthcare preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult’s answers in each of the seven scenarios.ResultsEighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies’ guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios.ConclusionsFindings suggest that a directive might provide better insight into a person’s wishes than the person’s proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own.Trial registration numberISRCTN89993391; Post-results. (shrink)

Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included in the analysis; (...) 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients were more uncomfortable than older patients. While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients. Approximately half of patients were uncomfortable sharing PHI with commercial enterprises. Most patients preferred to track PHI usage, with the highest proportion once again reported by the youngest patients. A majority of patients also wished to be notified regarding study results. Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research. (shrink)

The problem of addiction to psychoactive substances, such as alcohol and other drugs, has been addressed in psychiatry traditionally from the perspective of a mechanistic-reductionist epistemological model, whose main focus in clinical care is to avoid or suppress the use of these substances, rather than understanding the meaning of a treatment and the meaning of the alterations of consciousness produced by these addictive substances. This paper attempts to contribute towards overcoming this epistemological perspective from the perspective of phenomenological psychopathology. (...) In the first part of the article, the main characteristics of phenomenology and its incorporation into the field of mental health will be presented. Then the issue of addiction will be analysed from two ways of understanding it: the mechanistic-reductionist model and the phenomenological dialectical model. Finally, the pragmatic consequences of the dialectical perspective of phenomenology, called Dialectical Phenomenology (DPh), which seeks to enrich the diagnostic process in the mental health clinic, allowing scientific diagnoses to approach the complexities of clinical reality, will be presented. (shrink)

The focus of this article is on elderly patients’ and nursing staff perceptions of informed consent in the care of elderly patients/residents in five European countries. The results suggest that patients and nurses differ in their views on how informed consent is implemented. Among elderly patients the highest frequency for securing informed consent was reported in Finland; the lowest was in Germany. In contrast, among nurses, the highest frequency was reported in the UK (Scotland) and the lowest in Finland. (...) In a comparison of patients’ and nurses’ perceptions, nurses had more positive views than patients in all countries except Finland. Patients with less need for nursing interventions in Greece and Spain gave their consent less often. The German and Greek patients were older, and the results also point to an association between this and their lower frequency of giving consent. In Spain, patients who were married or who had a family member or friend to look after their personal affairs were more likely to be included in the group whose consent was sought less often. This is the fourth of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)