Distress among healthcare providers who provided end-of-life care during the COVID-19 pandemic: a longitudinal survey study (the CO-LIVE study).

INTRODUCTION: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider's characteristics and care circumstances related to COVID-19 are associated with distress. METHODS: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic's first 18 months. Data of four time periods were analyzed using descriptive statistics, logistic regression analysis and Generalized Estimating Equation. RESULTS: Of the respondents (n=302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, healthcare providers reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. Healthcare providers working in nursing homes and hospitals were more likely to experience signs of distress, compared to healthcare providers working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding. CONCLUSION: A substantial amount of healthcare providers reported signs of distress during the first 1.5 years of the COVID-19 pandemic. A cause of distress appears to be that healthcare providers cannot provide the care they desire due the pandemic. Even though the pandemic is over, this remains an important and relevant finding, as high workload can sometimes force healthcare providers to make choices about how they provide care. Given that this can cause prolonged stress and this can lead to burnout (and HCPs leaving their current positions), it is now especially important to continue observing the long term developments of the well-being of our healthcare providers in palliative care and provide timely and adequate support where needed.

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.

BACKGROUND: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. METHODS: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. RESULTS: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). CONCLUSION: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. TRIAL REGISTRATION: NCT04678310. Registered 21/12/2020.

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey.

BACKGROUND: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. AIM: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. DESIGN: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. SETTING/PARTICIPANTS: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. RESULTS: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. CONCLUSION: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

Relatives' grief at three moments after death of a loved one during COVID-19 pandemic (the CO-LIVE study).

COVID-19 has complicated grieving experiences. Rich qualitative description of these experiences is lacking. We interviewed 10 bereaved relatives (mainly daughters) 2-3 times each: shortly after their relative died in the first wave of COVID-19 pandemic, and after 12 and 18 months (29 interviews in total). Analyses took place according to inductive content analysis. Losses were threefold: the loss of the loved one; of the (desired) way to say farewell, and of social support. We identified five ways in which the three COVID-19 related loss experiences interacted: overshadowed grief, cumulative grief, triggered grief, derailed grief, and conciliatory grief. This study demonstrated that pre-COVID-19 diagnoses and understandings of grief are not sufficient to picture grief during and after the COVID-19 pandemic. These grief experiences are more complex and deserve further exploration.

Dying in times of COVID-19: Experiences in different care settings - An online questionnaire study among bereaved relatives (the CO-LIVE study).

BACKGROUND: The COVID-19 pandemic and restricting measures have affected end-of-life care across different settings. AIM: To compare experiences of bereaved relatives with end-of-life care for a family member or friend who died at home, in a hospital, nursing home or hospice during the pandemic. DESIGN: An open observational online survey was developed and disseminated via social media and public fora (March-July 2020). Data were analyzed using descriptive statistics and logistic regression analyses. PARTICIPANTS: Individuals who lost a family member or friend in the Netherlands during the COVID-19 pandemic. RESULTS: The questionnaire was filled out by 393 bereaved relatives who lost a family member or friend at home (n = 68), in a hospital (n = 114), nursing home (n = 176) or hospice (n = 35). Bereaved relatives of patients who died in a hospital most often evaluated medical care (79%) as sufficient, whereas medical care (54.5%) was least often evaluated as sufficient in nursing homes. Emotional support for relatives was most often evaluated as sufficient at home (67.7%) and least often in nursing homes (40.3%). Sufficient emotional support for relatives was associated with a higher likelihood to rate the place of death as appropriate. Bereaved relatives of patients who died at a place other than home and whose care was restricted due to COVID-19 were less likely to evaluate the place of death as appropriate. CONCLUSION: End-of-life care during the COVID-19 pandemic was evaluated least favourably in nursing homes. The quality of emotional support for relatives and whether care was restricted or not were important for assessing the place of death as appropriate.

Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study).

BACKGROUND: The COVID-19 pandemic affects care practices for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for patients and their relatives in the physical, psychological, social and spiritual domains. AIM: To give insight into aspects of end-of-life care practices that might have jeopardised or supported the dignity of the patients and their family members during the first wave of the COVID-19 pandemic in the Netherlands. METHODOLOGY: A qualitative study involving 25 in-depth interviews with purposively sampled bereaved relatives of patients who died during the COVID-19 pandemic between March and July 2020 in the Netherlands. We created a dignity-inspired framework for analysis, and used the models of Chochinov et al. and Van Gennip et al. as sensitising concepts. These focus on illness-related aspects and the individual, relational and societal/organisational level of dignity. RESULTS: Four themes concerning aspects of end-of-life care practices were identified as possibly jeopardising the dignity of patients or relatives: 'Dealing with an unknown illness', 'Being isolated', 'Restricted farewells' and 'Lack of attentiveness and communication'. The analysis showed that 'Meaningful end-of-life moments' and 'Compassionate professional support' contributed to the dignity of patients and their relatives. CONCLUSION: This study illuminates possible aspects of end-of-life care practices that jeopardised or supported dignity. Experienced dignity of bereaved relatives was associated with the unfamiliarity of the virus and issues associated with preventive measures. However, most aspects that had an impact on the dignity experiences of relatives were based in human action and relationships. Relatives experienced that preventive measures could be mitigated by health care professionals to make them less devastating.

Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study).

BACKGROUND: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19. AIM: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process. DESIGN: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020. SETTING/PARTICIPANTS: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home (n = 163), hospital (n = 249), nursing home (n = 192), hospice (n = 89) or elsewhere (n = 68). RESULTS: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff's favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices. CONCLUSIONS: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component.

What it means to be a palliative care volunteer in eight European countries: a qualitative analysis of accounts of volunteering.

This paper addresses the stories of volunteers in hospice and palliative care (HPC) from eight European countries. The aims of the paper are to explore the experiences of volunteers in HPC from their insider perspective, to understand why volunteers choose to work in this field and to understand what it means to them to be involved in palliative care in this way. Stories were collected by the European Association for Palliative Care (EAPC) Task Force for Volunteering contacts in each of the eight countries. The majority of stories (n = 32) came from volunteers involved in different settings including adult patient's homes, hospices, hospitals and care homes. Twenty volunteers were female, six were male, and ten did not give their gender. Stories were translated into English, and a qualitative framework analysis was performed. Volunteers were asked two questions: 'What do you do as a volunteer?' 'What does volunteering mean to you?' Three themes were identified from the data: (i) What volunteers do (ii) How volunteers approach their work and (iii) What working in HPC means to volunteers. The analysis revealed that common approaches to addressing and describing HPC volunteering in terms of tasks and roles could be expanded. To volunteers, it is not about tasks, but about a part of their life, the impact upon which can be significant. The results of this paper, therefore, add to the understanding of volunteers, in the sense of giving attention, being with, and of compassion as a community resource to patients and families in difficult situations. Theories about presence and presencing might have value in further underpinning this contribution to palliative care. Understanding the extent and depth of the volunteers' experience will help to prevent the undervaluing of their contribution and increase the impact of their involvement.

Caregiving for ageing parents: A literature review on the experience of adult children.

BACKGROUND: More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking. AIM: This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research. METHOD: A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The 'SPIDER' eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized. ETHICAL CONSIDERATION: Ethical requirements were respected in every phase of the research process. FINDINGS: Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children's caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development. DISCUSSION: Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed. CONCLUSION: Caring for ageing parents is a continuous quest for giving the best possible care and living up to one's personal values, within the context of the parent's declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

Dignifying and undignifying aspects of care for people with dementia: a narrative review.

BACKGROUND: The progressive disease trajectory makes people with dementia increasingly vulnerable and gradually more dependent on others which can lead to admission to a nursing home. Special interest in dignity in people with dementia has led to a growing body of knowledge towards promoting or hindering their dignity. AIM: The aim of this narrative review was to synthesise dignifying and undignifying aspects of formal and informal care for people with dementia within nursing homes. METHOD: The electronic databases CINAHL, SCOPUS, PSycInfo and PubMed were systematically searched with the terms 'dementia' and 'dignity', complemented with the use of snowballing and reference check. A total of 789 unique items were found. The search and selection process was structured by the PRISMA framework, and both authors formulated the criteria of eligibility. A methodological check was performed using the critical appraisal tool of Hawker. This process led to inclusion of 29 articles which were reviewed with the help of the guidelines for narrative synthesis by Popay et al. FINDINGS: The emerged dignifying and undignifying aspects of formal and informal care are characterised by either a successful or unsuccessful process of adjustment towards changing abilities, preferences and care needs of people with dementia. Three themes appeared as undignifying aspects of care: 'Stigmatisation and objectivation', 'Scarcity and hastiness' and 'Impending estrangement and misunderstanding'. Four themes were identified as dignifying aspect of care: 'Personalisation', 'Respect, attentiveness and encouragement', 'Attention for physical care and bodily gestures', and 'Foster belonging'. Literature synthesis showed mostly relational aspects of care concerning dignity in people with dementia. Formal and informal caregivers are important in maintaining and promoting their dignity.

Parents caring for children with normal life span threatening disabilities: a narrative review of literature.

BACKGROUND: Parents caring for children with normal life span threatening disabilities are exposed to numerous and accumulated stressors. In alignment with current approaches of evidence and value based care, it is essential to integrate knowledge of what encourages parents to hold or recover well-being in care planning and delivery. An omission in knowledge was identified concerning the outline of parents' challenges and ambitions understood from their perspective. AIM: The aim of this study was to explore the insiders perspective of parents caring for children with profound disabilities. METHOD: The electronic databases CINAHL, PsycINFO, Psychology and Behavioral Sciences Collection and PubMed/MEDLINE were searched to identify relevant research knowledge (≥2005; peer-reviewed publications in English language). The PRISMA framework was used for structuring literature screening. Criteria for screening and assessing eligibility led to inclusion of 26 studies. Studies were checked for methodological quality according to the critical appraisal tool developed by Hawker. Literature was reviewed following guidelines for narrative synthesis. RESULTS AND CONCLUSION: The majority of included studies presented similar, consistent findings though highlighted different aspects of the researched experiences by using specific scopes to understand and interpret the field of knowledge around the meaning of parenting a child with profound disabilities. The process of reviewing led to the overarching theme of keeping balance. Within this overarching theme, six dimensions were elaborated: rediscovering and maintaining family life, delicate inclusion in society, balancing within care triads, integration in service systems, financial consequences and nourishing personal resources to maintain or recover balance. Policymakers, community stakeholders and professional care deliverers should use extracted evidence in order to facilitate debated humanisation of care processes.

A Captive, a Wreck, a Piece of Dirt: Aging Anxieties Embodied in Older People With a Death Wish.

The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological-hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.

The social-political challenges behind the wish to die in older people who consider their lives to be completed and no longer worth living.

In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on 'completed life in old age' should primarily focus not on the question of whether or not to legitimize a self-directed death but on how to build an inclusive society where people may feel less unneeded, useless and marginalized.

Evaluating care from a care ethical perspective:: A pilot study.

BACKGROUND: Care ethical theories provide an excellent opening for evaluation of healthcare practices since searching for (moments of) good care from a moral perspective is central to care ethics. However, a fruitful way to translate care ethical insights into measurable criteria and how to measure these criteria has as yet been unexplored: this study describes one of the first attempts. OBJECTIVE: To investigate whether the emotional touchpoint method is suitable for evaluating care from a care ethical perspective. RESEARCH DESIGN: An adapted version of the emotional touchpoint interview method was used. Touchpoints represent the key moments to the experience of receiving care, where the patient recalls being touched emotionally or cognitively. Participants and research context: Interviews were conducted at three different care settings: a hospital, mental healthcare institution and care facility for older people. A total of 31 participants (29 patients and 2 relatives) took part in the study. Ethical considerations: The research was found not to be subject to the (Dutch) Medical Research Involving Human Subjects Act. FINDINGS: A three-step care ethical evaluation model was developed and described using two touchpoints as examples. A focus group meeting showed that the method was considered of great value for partaking institutions in comparison with existing methods. Reflection and discussion: Considering existing methods to evaluate quality of care, the touchpoint method belongs to the category of instruments which evaluate the patient experience. The touchpoint method distinguishes itself because no pre-defined categories are used but the values of patients are followed, which is an essential issue from a care ethical perspective. The method portrays the insider perspective of patients and thereby contributes to humanizing care. CONCLUSION: The touchpoint method is a valuable instrument for evaluating care; it generates evaluation data about the core care ethical principle of responsiveness.

Disconnectedness from the here-and-now: a phenomenological perspective as a counteract on the medicalisation of death wishes in elderly people.

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical-phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people.

Self-report questionnaire for measuring presence: development and initial validation.

BACKGROUND: The concept of 'presence' appears frequently in the literature and seems to be a highly relevant concept in discussing and evaluating quality of relations in healthcare practices. However, no existing self-report measure of presence for health professionals was found. PURPOSE: The purpose of this study was (i) to develop a self-report questionnaire for measuring presence and (ii) to conduct initial psychometric testing of the questionnaire. METHOD: The process followed two steps. Phase 1 consisted of the development of 64 items that were derived from the 'theory of presence' (ToP) as developed by Andries Baart in the Netherlands in 2001. Face and content validity were completed by a panel of experts in ToP. A pilot study to test understandability was done (N = 22). During Phase 2, 48 remaining items of the Presence Questionnaire for Caregivers (PQ-C) were tested among 723 healthcare professionals. Exploratory principal component analysis was conducted, and reliability coefficients and known-group validity were assessed. RESULTS: Principal component analysis showed three new components that were labelled 'dedicated attitude', 'openness in perception' and 'reciprocal humaneness'. Thirty-one items were retained which explain 25.4% of the variance. An initial psychometric assessment of the shortened scale showed a Cronbach's alpha of 0.82 and a Spearman-Brown coefficient (for equal length) of 0.63. There were significant differences in sum scores between groups based on age, years of experience and familiarity with ToP. CONCLUSION: It appeared possible to develop a self-report questionnaire for measuring presence and establish face and content validity. In initial exploratory factor analysis, the eight theoretical principles of ToP used to develop the questionnaire were not reflected, and three new components appeared. Further research is needed to examine the value of the three new dimensions, and investigation into the construct validity and reliability of the three new components is recommended.

Ethical considerations on the value of patient knowledge in long-term care: a qualitative study of patients suffering from Korsakoff 's syndrome.

AIM: This study explores experiences of patients suffering from Korsakoff's syndrome. It contributes to improved reflection on the value of patient knowledge. BACKGROUND: An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients' individual needs necessary to provide good care. The information given by patients suffering from Korsakoff's syndrome might be mistaken, invented and even not true. The value of these patients' experiences and knowledge had not been researched to date. METHOD: Data from six in-depth interviews were analysed concurrently through the constant comparative method. ETHICAL CONSIDERATIONS: The principles of voluntariness, confidentiality and anonymity were respected during the research process. FINDINGS: Four important themes within patients' knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective. CONCLUSION: This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients' unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the - unintended - effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff's syndrome.

Healthcare professionals under pressure in involuntary admission processes.

The main objective of this paper is to describe how quality of care may be improved during an involuntary admission process of patients suffering from Korsakoff's syndrome. It presents an empirically grounded analysis with different perspectives on 'doing good' during this process. Family carers', healthcare professionals' and legal professionals' ways of understanding and ordering this problematic situation appear very different. This could prevent patients from getting the proper care they need, with risk of more suffering and quality of life below the minimum acceptable. All this possibly lead to immoral dehumanizing situations. Firstly, the background of our empirical study is sketched. Secondly, the different perspectives on 'doing good' are summarized and compared. Thirdly, the tensions arising from the different conceptualizations of autonomy and different types of responsibilities of the actors are clarified. A common 'doing good' during involuntary admission necessitates removal of any tensions within the relational network by weighing and balancing the different perspectives on autonomy and the resulting responsibilities. With this in mind, we propose a renewed time/action table for involuntary admission, which tends to address all patients' needs at the right time. The solution presented might help healthcare professionals, who are squeezed in between patients, family carers, legal professionals and overall rules, to create practices in which patients suffering from Korsakoff's syndrome can maintain their dignity and receive the care they need. Earlier interventions, timely and adequate diagnosis, and diminishment of tensions between the different actors by fine-tuning their paradigmatic frameworks are suggested to be part of a solution.

How to increase quality of care during coercive admission? A review of literature.

BACKGROUND: Involuntary admission is still raising in numbers and as a procedure a widely discussed subject from ethical point of view. A common dilemma is the tension between individual freedom and the need to protect the patient. Patients who are coerced during the admission process often report negative feelings or trauma. Finding out quality issues remains a challenge for providing good care during coercive admission. AIM: This study aims to explore themes from patients' and professionals' perspectives within scientific literature on involuntary admission. METHODS: A literature review of English articles using Academic Search Elite, Cinahl, Medline, PubMed and Social Science Journals for the period 1995-2012 was conducted. Additional studies were identified using the National Centre for Biotechnology Information (NCBI). Search terms included involuntary, hospitalisation, ethical, admission, nursing home, coercion and factor. Finally, twenty-two articles were included and analysed out of 1216. RESULTS AND CONCLUSION: Articles were divided between those describing themes from patients' perspective and articles describing themes from professionals' perspective. Findings show that most experiences of patients can be traced back to one core experience: not being listened to or listened to. When patients experience being listened to genuinely, they feel more respected as a human being. The challenge for the professional carer seems to explicitly pay attention and stay in touch with the patients' emotional struggles while making the necessarily decision to admit the patient to prevent harm. Quality of care during coercive admission improves when professionals are able to do justice to both inside and outside perspectives simultaneously.

Can quality from a care ethical perspective be assessed? A review.

BACKGROUND: Ethics-of-care theories contain important notions regarding the quality of care; however, until now, concrete translations of the insights into instruments are lacking. This may be a result of the completely different type of epistemology, theories and concepts used in the field of quality of care research. OBJECTIVES: Both the fields of 'ethics of care' and 'quality of care' aim for improvement of care; therefore; insights could possibly meet by focusing on the following question: How could ethics-of-care theories contribute to better quality in care at a measurement level? This study reviews existing instruments with the aim of bridging this gap and examines the evidence of their psychometric properties, feasibility and responsiveness. RESEARCH DESIGN: A systematic search of the literature was undertaken using multiple electronic databases covering January 1990 through May 2012. METHOD AND FINDINGS: Of the 3427 unique references identified, 55 studies describing 40 instruments were selected. Using a conceptual framework, an attempt was made to distinguish between related concepts and to group available instruments measuring different types of concepts. A total of 13 instruments that reflect essential aspects of ethics-of-care theory were studied in greater detail, and a quality assessment was conducted. CONCLUSION: Three promising qualitative instruments were found, which follow the logic of the patient and take their specific context into account.