Developing and using a structured, conversation-based intervention for clarifying values and preferences for end-of-life in the advance care planning-naïve Swedish context: Action research within the DöBra research program.

Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DöBra cards were used with 65 people to catalyze discussions on preferences for the end-of-life. We found great individual variation in both Eco-map depictions of social networks and prioritization of the 37 DöBra card items. The DöBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.

Navigating power dynamics in engaging communities in end-of-life issues - Lessons learned from developing community-based intergenerational arts initiatives about death and loss.

Lack of community engagement in end-of-life issues and age-segregation in Swedish society motivated us to develop Studio DöBra, a community-based intergenerational arts initiative to support community engagement in end-of-life issues and develop intergenerational meeting places. Representatives from several community organizations formed a project group with first author MK, to develop Studio DöBra. Based on analysis of exploratory interviews with professionals involved in other, similar initiatives and data from Studio DöBra development, we discuss challenges related to power dynamics in developing initiatives to engage communities in end-of-life issues, and how these can inform the development of similar initiatives.

Between a rock and a hard place: Registered nurses' accounts of their work situation in cancer care in Swedish acute care hospitals.

PURPOSE: Hospital organizational features related to registered nurses' (RNs') practice environment are often studied using quantitative measures. These are however unable to capture nuances of experiences of the practice environment from the perspective of individual RNs. The aim of this study is therefore to investigate individual RNs' experiences of their work situation in cancer care in Swedish acute care hospitals. METHODS: This study is based on a qualitative framework analysis of data derived from an open-ended question by 200 RNs working in specialized or general cancer care hospital units, who responded to the Swedish RN4CAST survey on nurse work environment. Antonovsky's salutogenic concepts "meaningfulness", "comprehensibility", and "manageability" were applied post-analysis to support interpretation of results. RESULTS: RNs describe a tension between expectations to uphold safe, high quality care, and working in an environment where they are unable to influence conditions for care delivery. A lacking sense of agency, on individual and collective levels, points to organizational factors impeding RNs' use of their competence in clinical decision-making and in governing practice within their professional scope. CONCLUSIONS: RNs in this study appear to experience work situations which, while often described as meaningful, generally appear neither comprehensible nor manageable. The lack of an individual and collective sense of agency found here could potentially erode RNs' sense of meaningfulness and readiness to invest in their work.

Translating the Patient Dignity Inventory.

BACKGROUND: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden. AIMS: To translate the PDI into Swedish, including cultural adaptation for clinical use. METHODS: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs). FINDINGS: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs. CONCLUSION: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.

Quality of life in men with metastatic prostate cancer in their final years before death - a retrospective analysis of prospective data.

BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men's QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death. METHODS: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants' QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6-18 months and > 18 months before death. RESULTS: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006. CONCLUSION: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.

Family members´ experiences of the end-of-life care environments in acute care settings - a photo-elicitation study.

PURPOSE: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. METHOD: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. RESULTS: The interpretive description analysis process resulted in three constructed themes-Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. CONCLUSION: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

Family members' experiences of care of the dying in residential care homes where the Liverpool Care Pathway was used.

BACKGROUND: Residential care homes (RCHs) are increasingly becoming a common place of death for older people. AIM: The aim of this study was to describe family members' experiences of care of the dying in RCHs where the Liverpool care pathway for the dying patient was used. METHODS: This study had a descriptive qualitative study design. Fifteen (n=15) individual interviews were analysed using qualitative content analysis. RESULTS: The analysis resulted in three themes: being confident in a familiar and warm atmosphere, being involved vs not being involved in end-of-life (EoL) care, and being consoled by witnessing the health professional's endeavour to relieve suffering. SIGNIFICANCE OF RESULTS: The results indicated that taking part in a care plan seems to increase family members' feelings of involvement in EoL care. This study also highlights the family members' needs for increased possibilities for EoL discussions with the GP.

Not just things: the roles of objects at the end of life.

While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.

Factors Associated With Symptom Relief in End-of-Life Care in Residential Care Homes: A National Register-Based Study.

CONTEXT: Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life. OBJECTIVES: The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care. METHODS: The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N = 22,855). Univariate and multiple logistic regression analyses were conducted. RESULTS: Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety. CONCLUSION: Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect.

Public awareness of palliative care in Sweden.

OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region. RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

Care professional's experiences about using Liverpool Care Pathway in end-of-life care in residential care homes.

BACKGROUND: Residential care homes (RCHs) play an important role in end-of-life care, being the most common place of death for elderly people in several European countries. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve and ensure quality care at the end of life. There is a lack of scientific evidence supporting the use of care pathways. DESIGN: A descriptive qualitative study. OBJECTIVE: The aim was to describe care professionals' experiences of using the Liverpool Care Pathway for the Dying Patient in the care of dying residents in residential care homes. METHODS: Five focus group interviews and two individual interviews with enrolled nurses (n = 10), Registered Nurses (n = 9) and general practitioners (n = 5) were carried out and analysed using qualitative content analysis. RESULTS: Care professionals expressed that they became confident through a shared approach to care, were supported to tailor the care according to the residents' individual needs, were supported to involve family members in decision-making and care and became more aware of the care environment. CONCLUSION: The results of this study indicate that the LCP might be a useful tool for care professionals in improving end-of-life care in RCHs through increased attention to the goals of care, the individual needs of residents and family involvement.

End-of-life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire.

BACKGROUND: In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care. OBJECTIVE: The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members. DESIGN: A retrospective survey design. METHODS: Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used. RESULTS: In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old. CONCLUSION: This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.

Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life.

The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: "what is this picture of?" and "why is it meaningful to you?" The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development.

Going public: reflections on developing the DöBra research program for health-promoting palliative care in Sweden.

Introduction: Public health approaches to end-of-life (EoL) research and care are relatively rare in Sweden, and health-promoting palliative care (HPPC) remains a foreign concept for most. We recently consolidated our HPPC endeavors into a cohesive research program, DöBra, to promote constructive change and awareness to support better quality of life and death among the general population, in specific sub-groups, and in interventions directed to professional groups caring for dying individuals, their friends and families. Objectives: In this article, we aim to share ideas, experiences, and reflections from the early stages of this research program, particularly in relation to how we try to work with new 'publics', to contribute to the development of HPPC as a new research field. Methods and Results: We discuss some considerations which arise in the Swedish context, and present the underlying ideas and approaches used in the research program, with examples of their application. HPPC, based on ideas from new public health, is essential as an umbrella for the DöBra program. Action research, experience-based co-design, and knowledge exchange, all aim to bring together a variety of stakeholders to exchange ideas and expertise, and co-create experience-based evidence through knowledge generation, dissemination, and sharing. Discussion: In reflecting on what we have learned about publics and partnerships in EoL research to date, we question distinctions made between professionals and publics, concluding that including publics in public health research, means also including ourselves and making public many of the reflections, the mistakes, and the experiences we all have, to foster collective learning.

Opening the doors a crack wider: palliative care research data in the public domain.

This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.

Routine assessment of performance status during palliative chemotherapy when approaching end-of-life.

PURPOSE: Palliative chemotherapy treatment (PCT) offered late in the cancer disease trajectory may be problematic. It is not easy to accurately calculate whether the potential benefits will outweigh the side-effects. This study investigates whether routine use of the Performance Status in Palliative Chemotherapy questionnaire (PSPC) affects the proportions of patients receiving PCT during the last month of life, care utilization, and documentation routines. A secondary aim was to gather registered nurses' experiences of the PSPC in routine use. METHODS: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Nurses' reflections on the PSPC were collected and reviewed. RESULTS: No significant differences were found between users and non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (40% versus 17%). Nurses considered the questionnaires to be a valuable complement to verbal information when trying to acquire an accurate picture of patients' performance status. CONCLUSION: At this point in the development of the PSPC we did not find any significant decreases in the proportion of patients receiving PCT during the last month in life. However, as the nurses valued the PSPC, it can be used as a complementary tool in assessment of performance status until further research is conducted.

Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study.

BACKGROUND: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. AIM: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes. DESIGN: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services. SETTINGS/PARTICIPANTS: Patients who died at all 19 residential care homes in one municipality in Sweden. RESULTS: Shortness of breath (estimate = -2.46; 95% confidence interval = -4.43 to -0.49) and nausea (estimate = -1.83; 95% confidence interval = -3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate = -0.47; 95% confidence interval = -0.85 to -0.08). CONCLUSION: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.

Room for Death--International museum-visitors' preferences regarding the end of their life.

Just as pain medications aim to relieve physical suffering, supportive surrounding for death and dying may facilitate well-being and comfort. However, little has been written of the experience of or preferences for the surroundings in which death and dying take place. In this study, we aim to complement our research from perspectives of patients, family members and staff, with perspectives from an international sample of the general public. Data derives from a project teaming artists and craftspeople together to create prototypes of space for difficult conversations in end-of-life (EoL) settings. These prototypes were presented in a museum exhibition, "Room for Death", in Stockholm in 2012. As project consultants, palliative care researchers contributed a question to the public viewing the exhibition, to explore their reflections: "How would you like it to be around you when you are dying?" Five-hundred and twelve responses were obtained from visitors from 46 countries. While preliminary analysis pointed to many similarities in responses across countries, continued analysis with a phenomenographic approach allowed us to distinguish different foci related to how preferences for surroundings for EoL were conceptualized. Responses were categorized in the following inductively-derived categories: The familiar death, The 'larger-than life' death, The lone death, The mediated death, The calm and peaceful death, The sensuous death, The 'green' death, and The distanced death. The responses could relate to a single category or be composites uniting different categories in individual combinations, and provide insight into different facets of contemporary reflections about death and dying. Despite the selective sample, these data give reason to consider how underlying assumptions and care provision in established forms for end-of-life care may differ from people's preferences. This project can be seen as an example of innovative endeavors to promote public awareness of issues related to death and dying, within the framework of health-promoting palliative care.

WA3†Room for death - international museum - visitors' preferences regarding the end of their life.

BACKGROUND: Just as pain medications aim to relieve physical suffering, supportive surrounding for death and dying may facilitate well-being and comfort. However, little has been written of the experience of or preferences for settings for death and dying. AIM: We investigate preferences for and reflections about settings for end-of-life (EoL) in an international sample of museum visitors. METHODS: Data derive from a project teaming artists and craftspeople together to create prototypes of space for difficult conversations in EoL settings. These prototypes were presented in a museum exhibition, "Room for Death", in Stockholm in 2012. As project consultants, we contributed a question to the public viewing the exhibition: "How would you like it to be around you when you are dying?" and analysed responses with a phenomenographic approach. RESULTS: Five-hundred twelve responses were obtained from visitors from 46 countries. Responses were categorised in the following inductively- derived categories of types of deaths: The "Familiar", "Larger-than life", "Lone", "Mediated" "Calm and peaceful", "Sensuous", "'Green'", and "Distanced" death. Responses could relate to one category or be composites uniting different categories in individual combinations. CONCLUSION: These data provide insight into different facets of contemporary reflections about death and dying. Despite the selective sample, the findings give reason to consider how underlying assumptions and care provision in established forms for EoL care may differ from people's preferences. This project can be seen as an example of innovative endeavours to promote public awareness of issues related to death and dying, within the framework of health-promoting palliative care.

PA33†Reflections from the intersection of palliative care and design.

: This presentation is based on our reflections as two designers entering palliative care, one working with supportive environments for death and dying and one working with issues related to health-promoting palliative care. Death, dying and mourning are important universal conditions that raise existential thought and reflection. The focus of care is different here than in most other areas, as it is not about curing, and values go beyond medical perspectives. Thus, if we want to support meaningful experiences related to dying, it is necessary to look beyond institutional structures and disciplinary divisions. The practice of design has begun to move away from a primary concern with the commercial realm, to instead be used as a method to approach complexity to incrementally improve situations. A key aspect of this is to design with those concerned rather than for them. We argue that design related to contextual change requires an immersion within that context. An essential feature of design is making, and so, drawing on this disciplinary background, we iteratively try theories out, working towards minimising the gap between theory and practice. This approach, applied in a sensitive setting, has the potential to result in insights relevant in the particular situation, as well as offering transferable design methods. Convinced that the intersection of design and palliative care offers opportunities for both sectors, we will present concrete examples from our interdisciplinary research group, to talk about the opportunities and challenges of our work.