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.

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.

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.

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.

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.

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.

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.

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.

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.

Reflections on using biographical approaches in end-of-life care: dignity therapy as example.

The therapeutic potential of nonpharmacologic interventions using biographical approaches at the end of life (EoL) is being increasingly recognized, but less attention is paid to processes impeding realization of this potential. In this article, Swedish and Australian researchers reflect on and problematize experiences using one biographical approach, dignity therapy (DT), in EoL care in Sweden. We use this as an example, focusing on critical examination of the process of applying DT in practice, examining frictions experienced in recruiting participants, collecting the data, and creating a biography. We discuss issues regarding agency, which became evident in the recruitment process and choices made about participation, and the power differentials manifested in the interactive process of eliciting stories and crafting them into a final product. We also raise salient questions about how research and practice with biographical approaches in EoL care might better build on and further existing knowledge to better reflect the complexities of everyday life.

International palliative care experts' view on phenomena indicating the last hours and days of life.

BACKGROUND: Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient's life. This study is part of the OPCARE9 project, funded by the European Commission's Seventh Framework Programme. METHOD: The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings. RESULTS: The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80% expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho-social-spiritual support; response rate 72%, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have "high relevance" by more than 50% of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient's last hours/days of life: "breathing", "general deterioration", "consciousness/cognition", "skin", "intake of fluid, food, others", "emotional state" and "non-observations/expressed opinions/other". CONCLUSION: Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study.

BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. METHODS AND FINDINGS: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. CONCLUSIONS: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.

Avoiding harmful palliative chemotherapy treatment in the end of life: development of a brief patient-completed questionnaire for routine assessment of performance status.

BACKGROUND: Earlier studies have shown that up to 43% of patients with incurable cancer are treated with palliative chemotherapy in the last month of their lives. Although pretreatment blood tests are acceptable, the patient's general condition may not permit further palliative chemotherapy treatment (PCT). Presently, there is no patient self-assessment tool available to monitor performance status during PCT. OBJECTIVES: To describe the development process of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire, and the testing of its psychometric properties. METHODS: The questionnaire was developed by the authors based on the Eastern Cooperative Oncology Group Performance Status Rating (ECOG PSR) scale as well as their clinical experience with PCT. Adult patients who were diagnosed with epithelial cancers (n = 118) were enrolled to test the PSPC questionnaire for reliability, sensitivity for change, and validity. RESULTS: After stepwise modifications of the PSPC questionnaire, psychometric tests revealed acceptable values for reliability (via a test-retest method), sensitivity for change (via a comparison of patients with progressive disease over time), and validity (via a comparison of the PSPC vs the Edmonton Symptom Assessment System [ESAS]). LIMITATIONS: At this stage of questionnaire development, we are unable to conclude whether the PSPC is superior to the conventional ECOG PSR in the evaluation of performance status and the prediction of chemotherapy response. CONCLUSION: Psychometric tests suggest that the PSPC questionnaire may be a useful patient-completed tool in the late stages of cancer disease to routinely monitor performance status in palliative chemotherapy treatments so as to minimize the risk of inflicting more harm than good.

Meanings of participating in a lifestyle programme for persons with psychiatric disabilities.

Lifestyle changes that affect physical and psychological health are described in research literature; however, the meaning of participating in a lifestyle intervention programme together with the staff has not been described. This study illuminates meanings of participating in a lifestyle programme as experienced by persons with psychiatric disabilities. The first author interviewed five women and six men with schizophrenia and depressive syndrome, aged 26-53, participating in a lifestyle programme. The transcribed interviews were analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. Meanings of participating in a lifestyle programme include my health can be improved as both the physical effects and the obstacles are considered and the daily life is partially given a changed content in new experiences and by participating in something to take pride in. The meanings of participating together with the staff mean an increased sense of closeness and equality with the staff expressed in changes in relationships and the difference between the two groups being revealed and also in becoming aware of the life situation, an insight into the loss of a healthy life but also hope for the future is expressed. The conclusions that could be drawn from this study are that a lifestyle intervention affects health and other important life areas such as the content of daily life and the relationship with the carers, which appears to affect the sense of hope and the ability to see new possibilities. Carers should find situations and activities where the residents and carers participate under equal conditions giving the residents the opportunity to leave the sick roll, experience equality and develop good relationships.

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.

Experiences of symptoms in men with hormone refractory prostate cancer and skeletal metastases.

Advanced prostate cancer with skeletal metastases entails significant symptoms from both treatment and the disease itself. Although the diagnosis is a common one, knowledge of the symptom experience late in the disease trajectory is limited. The aim of the present study was to describe the experience of physical symptoms in men with hormone refractory prostate cancer and skeletal metastases. Twenty men answered a quality of life questionnaire before participating in semi-structured interviews. The interviews were analyzed using qualitative description. Findings show that the dominant symptoms were lack of energy and pain. Interestingly when talking about lacking energy the men described three different variants; lack of mental energy or initiative, lack of strength and stamina, and tiredness or sleepiness. Also, three different types of pain were described; pain from skeletal metastases, a diffuse moving pain, and pain not directly caused by the prostate cancer. Though a majority of the men scored being dissatisfied with their sex life; in the interviews, this was not described as a major distress. The findings also showed that the men experienced different symptoms despite the same diagnosis, skeletal metastases, stage, and androgen deprivation treatment, and that these symptoms are not necessarily experienced as problems or causing distress.

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.

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.