How should respiratory depression and loss of airway patency be handled during initiation of palliative sedation?

BACKGROUND: Loss of airway patency has been reported during initiation of palliative sedation. In present guidelines the loss of airway patency during initiation of palliative sedation is not addressed. Airway patency can be restored by jaw thrust/chin lift or placing the patient in the recovery position. AIM: A structured ethical analysis of how respiratory depression and loss of airway patency during initiation of palliative sedation should be handled. The essence of the dilemma is whether it is appropriate to apply simple non-invasive methods to restore airway patency in order to avoid the patient's immediate death. DESIGN: A structured analysis based on the four principles of healthcare ethics and stakeholders' interests. RESULTS: Beneficence and autonomy support a decision not to regain airway patency whereas non-maleficence lends weight to a decision to restore airway patency. Whether the proportionality criterion of the principle of double effect is met depends on the features of the individual case. The ethical problem appears to be a genuine dilemma where important values and arguments point to different conclusions. CONCLUSION: Whether to restore airway patency when the airway is obstructed during initiation of palliative sedation will ultimately be based on clinical judgment taking into account both any known patient preferences and relevant clinical information. There are strong arguments favoring both options in this clinical and ethical dilemma. The fact that a clear and universal recommendation cannot be made does not imply indifference regarding what is the clinically and ethically best option for each individual patient.

Healthcare use and costs in the last six months of life by level of care and cause of death.

BACKGROUND: Existing knowledge on healthcare use and costs in the last months of life is often limited to one patient group (i.e., cancer patients) and one level of healthcare (i.e., secondary care). Consequently, decision-makers lack knowledge in order to make informed decisions about the allocation of healthcare resources for all patients. Our aim is to elaborate the understanding of resource use and costs in the last six months of life by describing healthcare use and costs for all causes of death and by all levels of formal care. METHOD: Using five national registers, we gained access to patient-level data for all individuals who died in Norway between 2009 and 2013. We described healthcare use and costs for all levels of formal care-namely primary, secondary, and home- and community-based care -in the last six months of life, both in total and differentiated across three time periods (6-4 months, 3-2 months, and 1-month before death). Our analysis covers all causes of death categorized in ten ICD-10 categories. RESULTS: During their last six months of life, individuals used an average of healthcare resources equivalent to €46,000, ranging from €32,000 (Injuries) to €64,000 (Diseases of the nervous system and sense organs). In terms of care level, 63% of healthcare resources were used in home- and community-based care (i.e., in-home nursing, practical assistance, or nursing home care), 35% in secondary care (mostly hospital care), and 2% in primary care (i.e., general practitioners). The amount and level of care varied by cause of death and by time to death. The proportion of home- and community-based care which individuals received during their last six months of life varied from 38% for cancer patients to 92% for individuals dying with mental diseases. The shorter the time to death, the more resources were needed: nearly 40% of all end-of-life healthcare costs were expended in the last month of life across all causes of death. The composition of care also differed depending on age. Individuals aged 80 years and older used more home- and community-based care (77%) than individuals dying at younger ages (40%) and less secondary care (old: 21% versus young: 57%). CONCLUSIONS: Our analysis provides valuable evidence on how much healthcare individuals receive in their last six months of life and the associated costs, broken down by level of care and cause of death. Healthcare use and costs varied considerably by cause of death, but were generally higher the closer a person was to death. Our findings enable decision-makers to make more informed resource-allocation decisions and healthcare planners to better anticipate future healthcare needs.

Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial.

BACKGROUND: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. METHODS: This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient's preferences for information and involvement and the clinician's perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. DISCUSSION: The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23.

"It turned out right for both of us": A qualitative study about a preference for home death and actual place of death.

This qualitative study was conducted in Norway to explore couples' preference for home death when one of the partners was dying from cancer, and what made home death possible or not. We conducted dyad interviews with five couples. After the patients' death, the spouses participated in individual interviews. The data were interpreted using thematic narrative analysis. One patient died at home, and three died in a healthcare institution. The narratives show how interdependency and mutual care were important when dealing with home death. When care needs were manageable at home, home was perceived a safe place and the preferred place for death. When care needs were experienced to become unmanageable at home, the sense of safety changed and admission to a health care institution was considered the best option. Regardless of place of death, the spouses experienced the end to have turned out right for their partner and themselves.

'I believe respect means providing necessary treatment on time' - a qualitative study of health care providers' perspectives on disrespect and abuse during childbirth in Southwest Ethiopia.

BACKGROUND: The majority of maternal deaths occur in low-income countries, and facility-based childbirth is recognised as a strategy to reduce maternal mortality. However, experiences of disrespect and abuse during childbirth are reported as deterrents to women's utilisation of health care facilities. Health care providers play a critical role in women's experiences during childbirth; yet, there is limited research on service providers' views of disrespect and abuse in Ethiopia. Therefore, this study aimed to explore providers' perspectives on disrespect and abuse during childbirth in a teaching hospital in Southwest Ethiopia. METHOD: Qualitative study was conducted in a tertiary teaching hospital in Jimma Ethiopia. In-depth interviews were conducted with 32 purposefully selected health care providers, including midwives, obstetrics and genecology resident's, senior obstetricians and nurses. Interviews were audio-recorded, transcribed and thematically analysed using the qualitative data analysis software program MAXQDA. RESULTS: Three major themes were identified from the health care providers' perspectives: (1) respectful and abuse-free care, (2) recognised disrespect and abuse; and (3) drivers of women's feelings of disrespect and abuse. The first theme indicates that most of the participants perceived that women were treated with respect and had not experienced abuse during childbirth. The second theme showed that a minority of the participants recognised that women experienced disrespect and abuse during childbirth. The third theme covered situations in which providers thought that drivers for women felt disrespected. CONCLUSION: Most providers perceived women's experiences as respectful, and they normalized, and rationalized disrespect and abuse. The effect of teaching environment, the scarcity of resources has been reported as a driver for disrespect and abuse. To ensure respectful maternity care, a collaborative effort of administrators, teaching institutions, professional associations and researchers is needed. Such collaboration is essential to create a respectful teaching environment, ensure availability of resources, sustained in-service training for providers, and establishing an accountability mechanism for respectful maternity care.

Barriers and facilitators to implementing advance care planning in naïve contexts - where to look when plowing new terrain?

BACKGROUND: Advance care planning (ACP) is a way of applying modern medicine to the principle of patient autonomy and ensuring that patients receive medical care that is consistent with their values, goals and preferences. Robust evidence supports the benefits of ACP, but it remains an underutilized resource in most countries. This paper goes from the naïve point of view, and seeks to identify the barriers and facilitators to implementation in unfamiliarized contexts and in a whole system approach involving the clinical, institutional and policy level to improve the implementation of ACP. METHODS: Qualitative interviews were chosen to enable an explorative, flexible design. Qualitative interviews were conducted with 40 health care professionals and chief physicians in hospitals and in municipalities. The thematic analysis was done following Braun and Clarke's strategy for thematic analysis. RESULTS: The main reported barriers were the lack of time and space, a lack of culture and leadership legitimizing ACP, lack of common communication systems, and unclear responsibility about who should initiate, resulting in missed opportunities and overtreatment. Policy development, public and professional education, and standardization of documentation were reported as key to facilitate ACP and build trust across the health care system. CONCLUSIONS: Progressively changing the education of health professionals and the clinical culture are major efforts that need to be tackled to implement ACP in unfamiliarized contexts, particularly in contexts where patient's wishes are not legally binding. This will need to be tackled through rectifying the misconception that ACP is only about death, and providing practical training for health professionals, as well as developing policies and legislation on how to include patients and caregivers in the planning of care.

Establishing Clinical Ethics Committees in Primary Care: A Study from Norwegian Municipal Care.

Would primary care services benefit from the aid of a clinical ethics committee (CEC)? The implementation of CECs in primary care in four Norwegian municipalities was supported and their activities followed for 2.5 years. In this study, the CECs' structure and activities are described, with special emphasis on what characterizes the cases they have discussed. In total, the four CECs discussed 54 cases from primary care services, with the four most common topics being patient autonomy, competence and coercion; professionalism; cooperation and disagreement with next of kin; and priority setting, resource use and quality. Nursing homes and home care were the primary care services most often involved. Next of kin were present in 10 case deliberations, whereas patients were never present. The investigation indicates that it might be feasible for new CECs to attain a high level of activity including case deliberations within the time frame. It also confirms that significant, characteristic and complex moral problems arise in primary care services.

Nursing home residents with cognitive impairment can participate in advance care planning: A qualitative study.

AIMS: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges. DESIGN: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a "whole-ward" approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central. METHODS: From observed and audio-recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines. RESULTS: Residents actively relayed their preferences regarding healthcare and end-of-life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident-focused. However, involving residents was also challenging, findings included: residents' preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end-of-life care. CONCLUSIONS: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision-making can improve communication and resident involvement, reinforcing a relational understanding of autonomy. IMPACT: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person-centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.

Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies.

BACKGROUND: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs' experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). METHOD: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs' experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. RESULTS: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs' experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one's professional approach within the clinical encounter; 2) managing one's emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs' work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one's own emotions. CONCLUSION: Few qualitative studies highlighted HCPs' general working experiences, as they mainly focused on the patients' experiences or HCPs' experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs' work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. TRIAL REGISTRATION: PROSPERO number: CRD42019119052.

Implementing clinical ethics committees as a complex intervention: presentation of a feasibility study in community care.

BACKGROUND: How should clinical ethics support services such as clinical ethics committees (CECs) be implemented and evaluated? We argue that both the CEC itself and the implementation of the CEC should be considered as 'complex interventions'. MAIN TEXT: We present a research project involving the implementation of CECs in community care in four Norwegian municipalities. We show that when both the CEC and its implementation are considered as complex interventions, important consequences follow - both for implementation and the study thereof. Emphasizing four such sets of consequences, we argue, first, that the complexity of the intervention necessitates small-scale testing before larger-scale implementation and testing is attempted; second, that it is necessary to theorize the intervention in sufficient depth; third, that the identification of casual connections charted in so-called logic models allows the identification of factors that are vital for the intervention to succeed and which must therefore be studied; fourth, that an important part of a feasibility study must be to identify and chart as many as possible of the causally important contextual factors. CONCLUSION: The conceptualization of the implementation of a CEC as a complex intervention shapes the intervention and the way evaluation research should be performed, in several significant ways. We recommend that researchers consider whether a complex intervention approach is called for when studying CESS implementation and impact.

Correction to: Implementing clinical ethics committees as a complex intervention: presentation of a feasibility study in community care.

An amendment to this paper has been published and can be accessed via the original article.

Advance care planning in Norwegian nursing homes - limited awareness of the residents' preferences and values? A qualitative study.

BACKGROUND: 52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals' views on ACP is vital. The objective of this study is to explore nurses and physicians' aims and experiences with carrying out ACP in nursing homes. METHODS: Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data. RESULTS: The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear. CONCLUSION: Our study add insights into how ACP is practiced in nursing homes and the professionals' agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents' needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.

Male partners' experiences of caregiving for women with cervical cancer-a qualitative study.

AIMS AND OBJECTIVES: This study aimed to develop knowledge on the experiences of male partners of women with cervical cancer during and after the illness. We explore men's experiences of becoming caregivers as well as how the illness trajectory affects or has affected the relationship. BACKGROUND: Receiving a cancer diagnosis has a significant impact on the lives of both the cancer patient and their family members. However, studies of male partners' experiences with cancer patients are scarce. Additionally, cervical cancer and its impact on male caregivers are less explored than how other cancer diagnoses impact male caregivers. The theoretical concept of caring masculinities is helpful to interpret men's experiences as caregivers and partners. DESIGN: The study employs a qualitative design with semi-structured interviews with six men/partners recruited through the gynaecological section at a hospital. COREQ reporting guidelines have been applied. FINDINGS: Based on our analyses, we find that men's experiences of being caregivers and partners of women treated for cervical cancer are multifaceted, comprising emotional and practical aspects. However, three main findings stand out as particularly significant for men in the context of cervical cancer: loneliness, an altered sexual relationship and shared feelings of vulnerability. CONCLUSIONS: The men describe an interdependence in the relationship with the women but also how the relationships have been seriously altered, particularly when it comes to sexuality. These findings resonate with hegemonic as well as caring masculinities. RELEVANCE TO PRACTICE: Complex issues of intimacy and sexuality should be a pivotal element in educating future healthcare professionals. We strongly suggest that issues such as dealing with masculinity and caregiving roles should be on the agenda and reflected upon in teaching and supervising in clinical practice. A broader approach to sexual health and relationships is needed in the patient-clinician relationships, including information about human papillomavirus.

Implementing advance care planning in nursing homes - study protocol of a cluster-randomized clinical trial.

BACKGROUND: Close to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies. METHODS/DESIGN: This study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or "clusters" were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group. DISCUSSION: This project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.

"I just think that we should be informed" a qualitative study of family involvement in advance care planning in nursing homes.

BACKGROUND: As part of the research project "End-of-life Communication in Nursing Homes. Patient Preferences and Participation", we have studied how Advance Care Planning (ACP) is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members' participation and involvement in ACP- conversations may promote nursing home patients' participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients' participation in advance care planning. METHODS: Participant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues. RESULTS: We found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives' involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient's life at the time. The third analytical theme is patients' and relatives' shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death. CONCLUSIONS: An individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient's future in the nursing home is to be open to diversity and nuances and to the significance of the patient's former life and experiences.

Lived Observations: Linking the Researcher's Personal Experiences to Knowledge Development.

As researchers in palliative care, we recognize how involvement with seriously ill and dying persons has an impact on us. Using one's own senses, emotional and bodily responses in observations might open intersubjective dimensions of the research topic. The aim of the article is to highlight how phenomenological theories on intersubjectivity can be useful to develop rich and transparent data generation and analysis. We present three field note examples from observation in a hospice ward, which illuminate how researcher awareness of aspects of intersubjectivity can add valuable insights to data and analysis. Out of the examples, we elaborate on three arguments: (a) how the researcher's lived experience of time and space during fieldwork triggers new research questions, (b) how observations as an embodied activity can bring new insights and open new layers of meaning, and (c) the value of observations in gaining insight into relational aspects in a hospice.

Place of living at end-of-life according to cause of death: a comparative analysis of all decedents 70 years or older in 2009-2013 in Finland and Norway.

BACKGROUND: Time at home at end-of-life is perceived as valuable to individuals. Increasing home care is therefore often a political goal. Yet, little is known about where individuals live towards their end-of-life. Our aim was to describe where individuals reside their last 6 months of life in Finland and Norway, and how this differed by cause of death, sex, age, marital status, and income. METHODS: We used individual-leveled national registry data on all decedents aged >70 years in 2009-2013 to describe the number of days individuals spent at home, in hospital, in long-term care (LTC) and short-term care (STC) facilities. We described the place of residence for all and by causes of death: cancer, diseases of the circulatory system, disease in the respiratory system, and mental and behavioral disorders (primarily dementia). We analyzed how age, marital status (indicating informal care), and income associated with place of residence. Analyses were stratified by sex and country. RESULTS: During the last 6 months of life, decedents in Finland (n=186,017) and Norway (n=159,756) spent similar amounts of days in hospital (8 and 11 days) and in STC facilities (15 and 13 days). Finnish decedents spent more days at home (96 vs. 84 days) and fewer days in LTC facilities (64 vs. 80 days). Living arrangement differed similarly by cause of death in the two countries, e.g., decedents from cancer and mental and behavioral disorders spent 123 [113] vs. 29 [21] days at home in Finland (Norway). In both countries, for all causes of death, lower age and marital status were associated with more days at home, for both males and females. While those with higher income spent more days at home in Norway, the opposite was found in Finland. CONCLUSIONS: Older individual's living arrangements in the last 6 months of life were similar in Finland and Norway but differed by cause of death. Younger individuals and those with access to informal care spent more days at home, compared to their counterparts. With aging populations, more individuals will likely need LTC at their end of life. Policies should align with these needs when developing future health care services.

'It's not just about me': a qualitative study of couples' narratives about home death when one of the partners is dying of cancer.

Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples' shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: 'Struggles in an Unknown Terrain' and 'Reliance at the Kitchen Table'. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple's shared biography and the partner's ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples' negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase.

The construction of the responsible patient in complex palliative care: interpreting palliative care policies.

Background: To contribute with knowledge to health policy development, this article presents a critical discourse analysis of two Norwegian official reports on palliative care published in 1999 and 2017. Methods: We identify, describe and discuss how linguistic features in policy documents contribute to and engender a distinct change from 1999 to 2017 in how patients are framed, documenting the development of palliative care. Results: The analysis identifies and considers two interwoven discourses: the discourse of accountability and the discourse of complexity. The patient moves from being described as in need of care, in the 1999 report, to being described as an active and responsible patient making proper choices, in the 2017 report. Conclusion: Result of this policy development might be less involvement of professionals and focus on existential questions, and more responsibility on patients for their prospective wellbeing and health: a change that we argue should be considered and counteracted in upcoming policy processes considering palliative care.

Women's perspectives on disrespect and abuse experiences during childbirth in a teaching hospital in Southwest Ethiopia: a qualitative study.

There is evidence that women in Ethiopia often face disrespect and abuse in health care facilities during childbirth. Disrespect and abuse (D&A) violate women's right to dignified, respectful health care and decrease their trust in health care facilities. There is a need for more insight into women's perspectives on D&A during childbirth in different contexts. Therefore, this study aimed to explore women's perspectives on D&A during childbirth in a teaching hospital in South-West Ethiopia. A qualitative study was conducted from November 2017 to February 2018 using in-depth interviews and focus group discussions. Postnatal women were purposively chosen and scheduled for interviews six weeks postpartum. Data saturation occurred once 32 women were interviewed, and four focus group discussions were conducted. A thematic analysis method was used to analyse the data using MAXQDA qualitative analysis software. Three main themes emerged from the data: disrespect and abuse, its contributors, and perceived consequences. The subthemes of D&A include neglected care, non-consented care, physical abuse, lack of privacy, loss of autonomy, objectification, lack of companionship, and verbal abuse. The subthemes of contributors include health care provider-related, health care system-related, and women-related contributors. The subthemes of perceived consequences include the fear of using health care facilities. Women in Ethiopia experienced D&A. Health system factors, such as the teaching environment and scarcity of supplies, contribute the most to the identified D&A. Therefore, providers, administrators, training institutions, and researchers must collaborate to address these health system factors to reduce disrespect and abuse during childbirth in teaching hospitals.