Healthcare professionals' experiences of video consultations in palliative care in rural areas: an intervention study in community care.

BACKGROUND: The population is aging, leading to an increased need for palliative care and end-of-life care. There is a lack of research on the use of video consultations for knowledge transfer between specialist and general palliative care. The aim of this study was to describe healthcare professionals' experiences of video consultations in palliative care in community homecare and nursing homes in rural areas. METHODS: Individual interviews (n = 11) were conducted with five community nurses, one occupational therapist, two specialist palliative nurses, and three specialist palliative care physicians. The data were analysed using reflexive thematic analysis. RESULTS: The analysis identified three themes: feeling comfortable with increased availability of specialist expertise; seeing each other facilitates communication; and being supported by physically present care professionals is essential. CONCLUSION: HCPs suggest that video consultations are an effective way to increase access to specialist palliative care and provide more equal care to patients with palliative care needs in rural community care.

Psychometric testing of the Swedish version of the measure of moral distress for healthcare professionals (MMD-HP).

BACKGROUND: Moral distress has been described as moral constraints and uncertainty connected with guilty feelings of being unable to give care in accordance with one's values for good care. Various instruments to measure moral distress have been developed. The instrument measure of moral distress for healthcare professionals (MMD-HP) was developed to capture the experience and frequency of moral distress among various healthcare professionals. The MMD-HP has been translated and culturally adapted into the Swedish language and context; however, the translation has not been validated. Therefore, this study aimed to evaluate the validity and reliability of the Swedish version of the measure of moral distress for healthcare professionals (MMD-HP). METHODS: Eighty-nine staff from various professions at a hospital in northern Sweden participated in the study. A confirmatory factor analysis was performed to check for consistency with the original version of the MMD-HP. To evaluate internal consistency, Cronbach's alpha was calculated for each domain and for the scale as a whole. RESULTS: The scale as a whole showed a Cronbach's alpha of 0.96, with a range between 0.84 and 0.90 between the different subscales. A confirmatory factor analysis based on the original four-factor structure showed good fit indices with a χ2/df of 0.67, CFI at 1.00, TLI at 1.02 and NFI at 0.97. RMSEA was at 0.00, and SRMR was at 0.08. A comparison of the total score between three equally large groups of years of experience at the present workplace showed no significant differences (F = 0.09, df = 2, p = 0.912). CONCLUSIONS: We found that the Swedish version of the MMD-HP has shown validity and reliability for use in a Swedish context for measuring moral distress among health personnel.

Symptoms of Acute Myocardial Infarction as Described in Calls to Tele-Nurses and in Questionnaires: A Mixed-Methods Study.

BACKGROUND: Patient-reported symptoms of acute myocardial infarction (MI) may be affected by recall bias depending on when and where symptoms are assessed. AIM: The aim of this study was to gain an understanding of patients' symptom description in more detail before and within 24 hours after a confirmed MI diagnosis. METHODS: A convergent parallel mixed-methods design was used to examine symptoms described in calls between the tele-nurse and the patient compared with symptoms selected by the patient from a questionnaire less than 24 hours after hospital admission. Quantitative and qualitative data were analyzed separately and then merged into a final interpretation. RESULTS: Thirty patients (median age, 67.5 years; 20 men) were included. Chest pain was the most commonly reported symptom in questionnaires (24/30). Likewise, in 19 of 30 calls, chest pain was the first complaint mentioned, usually described together with the symptom onset. Expressions used to describe symptom quality were pain, pressure, discomfort, ache, cramp, tension, and soreness. Associated symptoms commonly described were pain or numbness in the arms, cold sweat, dyspnea, weakness, and nausea. Bodily sensations, such as feeling unwell or weak, were also described. Fear and tiredness were described in calls significantly less often than reported in questionnaires ( P = .01 and P = .02), whereas "other" symptoms were more often mentioned in calls compared with answers given in the questionnaire ( P = .02). Some symptoms expressed in the calls were not listed in the questionnaire, which expands the understanding of acute MI symptoms. The results showed no major inconsistencies between datasets. CONCLUSION: Patients' MI symptom descriptions in tele-calls and those reported in questionnaires after diagnosis are comparable and convergent.

Moral distress thermometer: Swedish translation, cultural adaptation and validation.

BACKGROUND: Moral distress is a problem and negative experience among health-care professionals. Various instruments have been developed to measure the level and underlying reasons for experienced moral distress. The moral distress thermometer (MDT) is a single-tool instrument to capture the level of moral distress experienced in real-time. AIM: The aim of this study was to translate the MDT and adapt it to the Swedish cultural context. RESEARCH DESIGN: The first part of this study concerns the translation of MDT to the Swedish context, and the second part the psychometric testing of the Swedish version. PARTICIPANTS AND RESEARCH CONTEXT: 89 healthcare professionals working at a hospital in northern Sweden participated. Convergent validity was tested between MDT and Measure of Moral Distress-Healthcare Professionals (MMD-HP), and construct validity was tested by comparing MDT scores among healthcare professionals. MDT was compared with responses to the final questions in MMD-HP. One-way ANOVA, Welch's ANOVA, Games-Howell post-hoc test and Pearson's correlation analysis were done. ETHICAL CONSIDERATIONS: The study was approved by the Swedish Ethics Review Authority (dnr 2020-04120) in accordance with Helsinki Declaration. RESULTS: The translated Swedish version of MDT was described as relevant to capture the experience of moral distress. The mean value for MDT was 2.26, with a median of 2 and a mode value of 0. The result showed moderate correlations between the MDT and MMD-HP total scores. There was a significant difference when comparing MDT and healthcare professionals who had never considered leaving their present position with those who had left and those who had considered leaving but had not done so, with the latter assessing significantly higher moral distress. CONCLUSION: The MDT is an easily available instrument useful as an extension to MMD-HP to measure the real-time experience of moral distress among healthcare professionals in a Swedish context.

Translation, adaptation, and validation of the Self-efficacy in Palliative Care scale (SEPC) for use in Swedish healthcare settings.

BACKGROUND: One challenge for healthcare professionals when delivering palliative care can be their lack of confidence. The Self-efficacy in Palliative Care Scale (SEPC) is considered a valid and reliable assessment scale to evaluate confidence when delivering palliative care. Currently, there is not a reliable instrument aimed to measure healthcare professionals' confidence in palliative care in Swedish. Therefore, this study aimed to translate, culturally adapt, and validate the SEPC-scale for use in a Swedish healthcare context. METHODS: This study applied the World Health Organization's (WHO) guidelines for translating and adapting instruments, using forward and back-translation, an expert panel, and cognitive interviews. Swedish experts in palliative care (n = 6) assessed the Swedish version of the SEPC-scale based on its relevance, understandability, clarity, and sensitivity on a Likert scale. Methods involved calculation of content validity index (CVI) with modified kappa statistics and cognitive interviewing with healthcare professionals (n = 10) according to the "think-aloud" method. RESULTS: Calculation of I-CVI (Item-CVI) showed that the Swedish SEPC-scale was considered relevant but needed some modifications to improve its understandability and clarity. The experts recognized an absence of precision in some items that affected clarity and understanding. Likewise, the healthcare professionals highlighted some challenges with understandability and clarity. They indicated that the scale was relevant, but a few items needed adjustment to fit a broader range of healthcare professionals. Items that referred to death and dying could be sensitive but were considered relevant. CONCLUSIONS: The SEPC-scale is considered valid for use in Swedish healthcare practice, for a broad range of healthcare professionals, and for diagnoses other than cancer. This study shows that cultural adaptation is necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.

Strategies for knowledge translation of a palliative approach outside specialized palliative care services: a scoping review.

OBJECTIVES: Research suggests palliative care to be translated and integrated in non-specialized palliative care services throughout the palliative care continuum across populations and settings. A need has been identified to build on the existing research literature in order to design strong knowledge translation strategies that can be evaluated in future research. The aim was to map strategies for knowledge translation of a palliative approach to care into non-specialized palliative care services for adult patients. The objectives were to explore the primary research activities, the specific type of knowledge translation strategies used, the research designs and study settings for such evaluations along with the major results thereof, and to identify major research gaps in this area. METHODS: A scoping review was performed to map the volume and characteristics of research literature (project registered in PROSPERO #2018 CRD42018100663). The ten-year period 2010 to 2019 was searched in six major databases for original articles published in English in which the knowledge translation of a palliative approach for adult patients was evaluated in non-specialized palliative healthcare settings, and all type of empirical data-based research designs. We excluded non-English, non-empirical articles, non-evaluation of knowledge translations, specialized palliative care settings, and other types of publications (i.e. non-original articles). RESULTS: Most of the 183 included articles focused on patients with cancer who were dying in hospitals and in high income countries. Only 13 articles focused on early palliative care. A palette of different strategies was used to implement palliative care in non-specialist palliative settings; no strategy was identified as outstanding. The majority of the articles had unspecified essential components of the research designs. CONCLUSION: Previous suggestions for utilization of implementation science for knowledge translation of a palliative approach to care into non-specialized palliative care services are confirmed, and established knowledge translation theories can strengthen the field. To advance this specific field of knowledge, meticulously detailed reporting of studies is required as related to research designs, clarifications of contextual influences and mechanisms at work. Specific systematic reviews and meta-syntheses in the field are merited.

Postgraduate nursing students' experiences of practicing ethical communication.

BACKGROUND: Ethics communication has been described as a pedagogical form, promoting development of ethical competence among nursing students. The 'one to five method' was developed by this research group as a tool for facilitating ethical communication in groups among healthcare professionals but has not yet been evaluated. AIM: To explore post-graduate nursing students' experiences of practicing ethical communication in groups. RESEARCH DESIGN: The study design is qualitative. PARTICIPANTS AND RESEARCH CONTEXT: The study comprised 12 nursing students on a post-graduate course for Registered Nurses focusing on palliative care. After education the students engaged as participants and facilitators in ethics communication in groups, with support from the 'one to five method'. Data were derived from the students written reflections and subjected to thematic analysis. ETHICAL CONSIDERATIONS: The study was performed in accordance with the ethical standards in the 2013 Helsinki Declaration and approved by the Ethics Committee of the Medical Faculty at Umeå University. RESULTS: An overall theme was identified, 'being supported to achieve a democratic dialogue concerning ethical problems' and five themes, related to each step of the 'one to five method'. The themes concerned: putting the experience of an ethical dilemma into words; being confirmed by shared emotions; defining the value conflict using ethical principles; expressing virtues of empathy and raised awareness; jointly finding various action approaches. DISCUSSION: Regular ethics communication in groups encourages nursing students to actively seek understanding and clarification of ethically difficult situations. CONCLUSIONS: The results indicate that ethics communication in groups could be a way of developing virtues during education. Interventions using the 'one to five method' need to be further studied among student groups from other healthcare contexts.

The Swedish translation and cultural adaptation of the Measure of Moral Distress for Healthcare Professionals (MMD-HP).

BACKGROUND: Moral distress has been described as an emotionally draining condition caused by being prevented from providing care according to one's convictions. Studies have described the impact of moral distress on healthcare professionals, their situations and experiences. The Measure of Moral Distress for Healthcare Professionals (MMD-HP) is a questionnaire that measures moral distress experienced by healthcare professionals at three levels: patient, system and team. The aim of this project was to translate and make a cultural adaption of the MMD -HP to the Swedish context. METHODS: The questionnaire comprises 27 items, rated according to frequency and intensity on a five-point Likert scale (0-4). The procedure for translating MMD-HP followed WHO guidelines (2020). These entailed a forward translation from English to Swedish, a back translation, expert panel validation, pretesting and cognitive face-to-face interviews with 10 healthcare professionals from various professions and healthcare contexts. RESULTS: The Swedish version of MMD-HP corresponds essentially to the concept of the original version. Parts of some items' had to be adjusted or removed in order to make the item relevant and comprehensible in a Swedish context. Overall, the cognitive interviewees recognized the content of the items which generally seemed relevant and comprehensible. CONCLUSION: The Swedish version of MMD-HP could be a useful tool for measuring moral distress among healthcare professionals in a Swedish healthcare context.

Clinical profile of rural community hospital inpatients in Sweden - a register study.

OBJECTIVE: Patients in Sweden's rural community hospitals have not been clinically characterised. We compared characteristics of patients in general practitioner-led community hospitals in northern Sweden with those admitted to general hospitals. DESIGN: Retrospective register study. SETTING: Community and general hospitals in Västerbotten and Norrbotten counties, Sweden. PATIENTS: Patients enrolled at community hospitals and hospitalised in community and general hospitals between 1 January 2010 and 31 December 2014. OUTCOME MEASURES: Age, sex, number of admissions, main, secondary and total number of diagnoses. RESULTS: We recorded 16,133 admissions to community hospitals and 60,704 admissions to general hospitals. Mean age was 76.8 and 61.2 years for community and general hospital patients (p < .001). Women were more likely than men to be admitted to a community hospital after age adjustment (odds ratio (OR): 1.11; 95% confidence interval (CI): 1.09-1.17). The most common diagnoses in community hospital were heart failure (6%) and pneumonia (5%). Patients with these diagnoses were more likely to be admitted to a community than a general hospital (OR: 2.36; 95% CI: 2.15-2.59; vs. OR: 3.32: 95% CI: 2.77-3.98, respectively, adjusted for age and sex). In both community and general hospitals, doctors assigned more diagnoses to men than to women (both p<.001). CONCLUSIONS: Patients at community hospitals were predominantly older and women, while men were assigned more diagnoses. The most common diagnoses were heart failure and pneumonia. Our observed differences should be further explored to define the optimal care for patients in community and general hospitals.Key pointsThe patient characteristics at Swedish general practitioner-led rural community hospitals have not yet been reported. This study characterises inpatients in community hospitals compared to those referred to general hospitals.• Patients at community hospitals were predominantly older, with various medical conditions that would have led to a referral to general hospitals elsewhere in Sweden. • Compared to men, women were more likely to be admitted to community hospitals than to general hospitals, even after adjustment for age. To the best of our knowledge, this pattern has not been reported in other countries with community hospitals. • In both community hospitals and general hospitals, doctors assigned more diagnoses to men than to women.

Nurses' perceptions about a web-based learning intervention concerning supportive family conversations in home health care.

AIMS AND OBJECTIVES: To describe the perceptions that municipal primary healthcare nurses and municipal registered nurses had about a web-based learning intervention concerning supportive family health conversations in municipal home health care. BACKGROUND: Even though family health conversations are well grounded in theory with several reported benefits for patients and families, most working nurses have little or no training in practising family systems nursing including family health conversations. Continued learning is necessary for nurses, where web-based learning may be one answer of updating the professional skills and knowledge of nurses regarding supporting families. DESIGN: The study used a descriptive design and followed the "Consolidated criteria for reporting qualitative research" (COREQ) checklist. METHODS: Twenty-one nurses participated in an educational intervention that consisted of web-based learning and two face-to-face seminars about family systems nursing including family health conversations. The nurses were interviewed after completion, and the audio-recorded interviews were transcribed verbatim and analysed using qualitative content analysis. RESULTS: The findings consist of nurses' perceptions regarding the disposition of instruction, the prerequisites for learning and a changed approach when working with families. The findings are further reflected on through Illeris' theory concerning learning triangle. CONCLUSIONS: The findings are encouraging for educating nurses in family health conversations at their workplace, with the purpose of supporting patients and families. However, it is important to be aware of the different dimensions of learning, in addition to the appraisal of social aspects and organisational circumstances when educating nurses as they influence the utilisation of the knowledge. RELEVANCE TO CLINICAL PRACTICE: This web-based learning intervention seems to be suitable for educating nurses in family health conversations and could be an appropriate step towards implementing these conversations in home health care with the purpose of supporting families.

Areas for quality improvements in heart failure care: quality of care from the family members' perspective.

BACKGROUND: The complex needs of people with chronic heart failure (HF) place great demands on their family members, and it is important to ask family members about their perspectives on the quality of HF care. OBJECTIVE: To describe family members' perceptions of quality of HF care in an outpatient setting. METHODS: A cross-sectional study using a short form of the Quality from Patients' Perspective (QPP) questionnaire for data collection. The items in the questionnaire measure four dimensions of quality, and each item consists of both the perceived reality of the care and its subjective importance. The study included 57 family members of patients with severe HF in NYHA class III-IV. RESULTS: Family members reported areas for quality improvements in three out of four dimensions and in dimensionless items. The lowest level of perceived reality was reported for treatment for confusion and loss of appetite. Treatment for shortness of breath, access to the apparatus and access to equipment necessary for medical care were the items with the highest subjective importance for the family members. CONCLUSION: Family members identified important areas for quality improvement in the care for patients with HF in an outpatient setting. In particular, symptom alleviation, information to patients, patient participation and access to care were identified as areas for improvements. Thus, measuring quality from the family members' perspective with the QPP might be a useful additional perspective when it comes to the planning and implementation of changes in the organisation of HF care.

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.

Family members' experiences of integrated palliative advanced home and heart failure care: A qualitative study of the PREFER intervention.

ABSTRACTObjective:Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care. METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis. RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves. SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

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.

Areas for quality improvements in heart failure care: quality of care from the patient's perspective.

BACKGROUND: Heart failure is a serious condition with high mortality and a high symptom burden. Most patients with heart failure will be taken care of in primary care but the knowledge of how the quality of care is perceived by patients with heart failure is limited. OBJECTIVE: The aim was to explore how patients with heart failure report quality of care, in an outpatient setting. METHODS: Seventy-one patients with a confirmed diagnosis of heart failure and who were cared for in an outpatient setting were included in this cross-sectional study. Quality of care was assessed with a short form of the Quality from the Patient's Perspective questionnaire. The items measured four dimensions, and each item consists of both perceived reality of the received care and its subjective importance. RESULTS: Inadequate quality was identified in three out of four dimensions and in items without dimension affiliation. In total, inadequate quality was identified in 19 out of 25 items. Patients reported the highest level of perceived reality in 'my family member was treated well' and the lowest perceived reality in 'effective treatment for loss of appetite'. Effective treatment for shortness of breath was of the highest subjective importance for the patients. CONCLUSION: Important areas for improvement in the quality of care for patients with heart failure in an outpatient setting were identified, such as symptom alleviation, information, participation and access to care.

A cost-effectiveness study of person-centered integrated heart failure and palliative home care: Based on a randomized controlled trial.

BACKGROUND: Previous economic studies of person-centered palliative home care have been conducted mainly among patients with cancer. Studies on cost-effectiveness of advanced home care for patients with severe heart failure are lacking when a diagnosis of heart failure is the only main disease as the inclusion criterion. AIM: To assess the cost-effectiveness of a new concept of care called person-centered integrated heart failure and palliative home care. DESIGN: A randomized controlled trial was conducted from January 2011 to 2013 at a center in Sweden. Data collection included cost estimates for health care and the patients' responses to the EQ-5D quality of life instrument. SETTING/PARTICIPANTS: Patients with chronic and severe heart failure were randomly assigned to an intervention (n = 36) or control (n = 36) group. The intervention group received the Palliative Advanced Home Care and Heart Failure Care intervention over 6 months. The control group received the same care that is usually provided by a primary health care center or heart failure clinic at the hospital. RESULTS: EQ-5D data indicated that the intervention resulted in a gain of 0.25 quality-adjusted life years, and cost analysis showed a significant cost reduction with the Palliative Advanced Home Care and Heart Failure Care intervention. Even if costs for staffing are higher than usual care, this is more than made up for by the reduced need for hospital-based care. This intervention made it possible for the county council to use €50,000 for other needs. CONCLUSION: The Palliative Advanced Home Care and Heart Failure Care working mode saves financial resources and should be regarded as very cost-effective.

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.

Struggling with issues about cardiopulmonary resuscitation (CPR) for end-stage heart failure patients.

BACKGROUND: Integrating heart failure and palliative care teams combines unique expertise from both cardiology and palliative care. However, professionals from the two arenas of life-saving cardiology and palliative care may well have different experiences with and approaches to patient care. Little is known how to optimally discuss cardiopulmonary resuscitation with patients and their relatives and what challenges are for healthcare providers. OBJECTIVE: The aim of this study was to describe the experiences and thoughts of members of an integrated heart failure and palliative care team concerning talking about CPR with end-stage heart failure patients. METHOD: We used a descriptive qualitative design, conducting group interviews during 2011 with professionals from different disciplines working with heart failure patients over a 1-year period. A qualitative content analysis was performed to examine the interview data. RESULTS: Professional caregivers in integrated heart failure and palliative homecare are struggling with the issue of CPR of end-stage heart failure patients. They wrestle with the question of whether CPR should be performed at all in these terminally ill patients. They also feel challenged by the actual conversation about CPR with the patients and their relatives. Despite talking them about CPR with patients and relatives is difficult, the study participants described that doing so is important, as it could be the start of a broader end-of-life conversation. CONCLUSION: Talking with patient and relatives about CPR in end-stage heart failure, as suggested in the current heart failure guidelines, is a challenge in daily clinical practice. It is important to discuss the difficulties within the team and to decide whether, whom, how and when to talk about CPR with individual patients and their relatives.

Sexual knowledge in patients with a myocardial infarction and their partners.

BACKGROUND: Sexual health and sexual activity are important elements of an individual's well-being. For couples, this topic is often affected after a myocardial infarction (MI). It has become increasingly clear that, after an MI, patients are insufficiently educated on how to resume normal sexual activity. However, sufficient data on the general knowledge that patients and partners have about sexual activity and MI are lacking. OBJECTIVE: The aims of this study were to explore and compare patients' and partners' sexual knowledge 1 month after a first MI and 1 year after the event and to compare whether the individual knowledge had changed over time. A second aim was to investigate whether patients and their partners report receiving information about sexual health and sexual activity from healthcare professionals during the first year after the event and how this information was perceived. SUBJECTS AND METHODS: This descriptive, comparative survey study enrolled participants from 13 Swedish hospitals in 2007-2009. A total of 115 patients with a first MI and their partners answered the Sex After MI Knowledge Test questionnaire 1 month after the MI and 1 year after the event. Correct responses generated a maximum score of 75. RESULTS: Only 41% of patients and 31% of partners stated that they had received information on sex and relationships at the 1 year follow-up. The patients scored 51 ± 10 on the Sex After MI Knowledge Test at inclusion into the study, compared with the 52 ± 10 score for the partners. At the 1-year follow-up, the patients' knowledge had significantly increased to a score of 55 ± 7, but the partners' knowledge did not significantly change (53 ± 10). CONCLUSIONS: First MI patients and their partners reported receiving limited information about sexual issues during the cardiac rehabilitation and had limited knowledge about sexual health and sexual activity.