Background: An essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity Care Intervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted to a Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions. These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest care actions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), and health care professionals (HPs) in municipality care in Sweden.
Methods: This study used a descriptive design with a qualitative approach. Data from 20 participants were collected through semi-structured individual interviews with patients (n = 3), SOs (n = 4), two focus groups with nurses (n = 9) and one focus group with physicians (n = 4) in two Swedish municipalities. These data were deductively analysed using qualitative content analysis with the Chochinov model of dignity as framework.
Results: With the Chochinov model of dignity as a framework, care actions based on suggestions from the participants were identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Social dignity inventory. The study found both specific concrete care actions and more general approaches. Such general approaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours. However, these general approaches could also be relevant as specific care actions to conserve dignity in relation to certain issues. Care actions were also found to be linked to each other, showing the importance of a holistic perspective in conserving dignity.
Conclusions: As part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant care actions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. The adapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.
Background: The high burden of disease-oriented drugs among older adults with limited life expectancy raises important questions about the potential futility of care.
Aim: To describe the use of drugs of questionable clinical benefit during the last 3 months of life of older adults who died from life-limiting conditions.
Design: Longitudinal, retrospective cohort study of decedents. Death certificate data were linked to administrative and healthcare registries with national coverage in Sweden.
Setting: Older adults (=75 years) who died from conditions potentially amenable to palliative care between 1 January and 31 December 2015 in Sweden. We identified drugs of questionable clinical benefit from a set of consensus-based criteria.
Results: A total of 58,415 decedents were included (mean age, 87.0 years). During their last 3 months of life, they received on average 8.9 different drugs. Overall, 32.0% of older adults continued and 14.0% initiated at least one drug of questionable clinical benefit (e.g. statins, calcium supplements, vitamin D, bisphosphonates, antidementia drugs). These proportions were highest among younger individuals (i.e. aged 75–84 years), among people who died from organ failure and among those with a large number of coexisting chronic conditions. Excluding people who died from acute and potentially unpredictable fatal events had little influence on the results.
Conclusion: A substantial share of older persons with life-limiting diseases receive drugs of questionable clinical benefit during their last months of life. Adequate training, guidance and resources are needed to rationalize and deprescribe drug treatments for older adults near the end of life.
Objective: To investigate clinicians' perspectives on the factors that shape the process of advance care planning in a nursing home context.
Design: Interviews. Latent qualitative content analysis.
Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes.
Main outcome measures:
Participants' views on advance care planning (ACP) at nursing homes.
Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patient's readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patient's preferences and staff's and family member's views; Decision & documentation of the ACP, e.g. clear documentation in patient's medical records that are up-to-date and available for staff caring for the patient, and Implementation & re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence - defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process
Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context. Key Points Advance care planning can help patients to receive care in line with their preferences and can positively impact quality of end-of-life care. Our results describe a process consisting of four manifest categories and one latent theme constituting the process of advance care planning, that may be considered in education in advance care planning. The significance of nurses and physicians perceiving beneficence as well as fear of accusations of maleficence are important factors to contemplate. The study has implications for healthcare staff caring for patients near the end of their lives, in particular patients in nursing homes.
BACKGROUND: Although chronic obstructive pulmonary disease (COPD) is a life-limiting disease with a significant symptom burden, the patients are more often referred to nursing homes (NH), than to specialist palliative care (SPC) at the end of life (EOL). This study aimed to compare patients with COPD in SPC with those in NH and to compare the care provided.
METHODS: A national register study was carried out where the Swedish National Airway Register and the Swedish Register of Palliative Care were merged. COPD patients who died in NHs or short-term facilities were included in the NH group (n = 415) and those who died in SPC were included in the SPC group (n = 355). Demographic and clinical variables were included from the Swedish National Airway Register and variables concerning EOL care from the Swedish Register of Palliative Care.
RESULTS: Symptom prevalence was similar in NHs and SPC, but symptom assessment (32% vs 20%), symptom relief medication (93-98% in SPC vs 74-90% in NH), EOL discussions (88% vs 66%), and bereavement support (94% vs 67%) were more likely in SPC (in all comparisons p < 0.001). Younger age and co-habiting increased the probability of dying in SPC (p < 0.001).
CONCLUSION: Despite similar symptom prevalence, older persons are more likely to be referred to NHs. If applying a palliative care philosophy in NHs, routine symptom assessment and prescription of rescue medication for frequent symptoms, would be more likely. Promoting advance care planning and EOL discussions at an earlier stage would result in more prepared patients and families.
The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.
Studies have found that sibling loss is associated with an increased risk of death from external causes (i.e. suicides, accidents and homicides). Increased psychiatric health problems following bereavement could underlie such an association. We studied the influence of sibling loss during childhood on psychiatric care in young adulthood, adjusting for psychosocial covariates shared by siblings in childhood. A national cohort born in Sweden in 1973-1982 (N = 701,270) was followed prospectively until 2013. Cox proportional hazards models were used to analyse the association between sibling loss during childhood and psychiatric inpatient and outpatient care identified by the Hospital Discharge Register. After adjustment for confounders, the HRs of psychiatric care in men who experienced sibling loss were 1.17 (95% CI 1.07-1.27) while the associations turned non-significant in women after adjustment for family-related psychosocial covariates, HR 1.07 (95% CI 0.99-1.16). An increased risk was found in men bereaved in early childhood (1.22 95% CI 1.07-1.38) and adolescence (1.27 95% CI 1.08-1.48). Among women, loss of a sibling during adolescence was significantly associated with psychiatric care (1.19 95% CI 1.03-1.36). Increased psychiatric health problems following bereavement could underlie the previously found association between sibling loss and mortality from external causes. Family-related psychosocial conditions shared by siblings in childhood may account for the association between sibling death and psychiatric care in adulthood.
BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.
AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.
METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.
RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.
CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.
INTRODUCTION: Dying patients with implantable defibrillators (ICD) have a risk of receiving unnecessary shocks before death. The aim of this study was to investigate if deactivation of shock therapy at end-of-life has increased since publication of new guidelines in 2010 on ICD management.
METHOD AND RESULTS: This is a study of two groups of ICD patients who died in hospitals before and after publication of new guidelines. Group 1 consists of 89 patients who died between 2003 and 2010. Group 2 consists of 252 patients, the total number of ICD patients in Sweden who died in hospital during 2014. Data was obtained from the Swedish ICD and Pacemaker Registry, Swedish Tax Agency and patient medical notes. Two-thirds died in wards other than Cardiology. Fifty-four percent in group 1 had a Do-Not-Resuscitate-order (DNR) compared to 73% in group 2. Shock deactivation was present in 52% in group 1 and 67% in group 2. The difference in shock deactivation between group 1 and 2 was only significant (p = 0.014) for DNR-patients treated in Cardiology. A significant difference (p = 0.036) was found in deactivation within group 2 between DNR-patients in Cardiology vs. DNR-patients in Non-Cardiology wards.
CONCLUSION: Two-thirds of ICD patients die in wards other than Cardiology. Since publication of guidelines on ICD management there is a general increase in shock deactivation for DNR-patients, but only significant for patients in Cardiology. This implicate that actions have to be taken for patients treated in Non-Cardiology wards to bridge the gap between guidelines recommendations and clinical practice.
BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.
AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.
DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.
SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.
RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.
CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
Where do people feel closest to those they have lost? This article explores how continuing bonds with a deceased person can be rooted in a particular place or places. Some conceptual resources are sketched, namely continuing bonds, place attachment, ancestral places, home, reminder theory, and loss of place. The authors use these concepts to analyze interview material with seven Swedes and five Britons who often thought warmly of the deceased as residing in a particular place and often performing characteristic actions. The destruction of such a place, by contrast, could create a troubling, haunting absence, complicating the deceased's absent-presence.
BACKGROUND: One-quarter of all cancer deaths in Sweden occur in hospitals. If the place of death affects the quality of end-of-life (EOL) is largely unknown.
METHODS: This population-based, retrospective study included all adults cancer deaths reported to the Swedish Register of Palliative Care in 2011â€“2013 (N = 41,729). Hospital deaths were compared to deaths occurring in general or specialised palliative care, or in nursing homes with respect to care quality indicators in the last week of life. Odds ratios (OR) with 95% confidence intervals (CI) were calculated with specialised palliative home care as reference.
RESULTS: Preferred place of death was unknown for 63% of hospitalised patients and consistent with the actual place of death in 25% compared to 97% in palliative home care. Hospitalised patients were less likely to be informed when death was imminent (OR: 0.3; CI: 0.28-0.33) as were their families (OR: 0.51; CI: 0.46-0.57). Validated screening tools were less often used in hospitals for assessment of pain (OR: 0.32; CI: 0.30-0.34) or other symptoms (OR: 0.31; CI: 0.28-0.34) despite similar levels of EOL symptoms. Prescriptions of as needed drugs against anxiety (OR: 0.27; CI: 0.24-0.30), nausea (OR: 0.19; CI: 0.17-0.21), or pulmonary secretions (OR: 0.29; CI: 0.26-0.32) were less prevalent in hospitals. Bereavement support was offered after 57% of hospital deaths compared to 87-97% in palliative care units and 72% in nursing homes.
CONCLUSIONS: Dying in hospital was associated with inferior end-of-life care quality among cancer patients in Sweden.
The impact that providing care to ageing parents has on adult children's lives may depend on the long-term care (LTC) context. A common approach to test this is to compare whether the impact of care-giving varies between countries with different LTC coverage. However, this approach leaves considerable room for omitted variable bias. We use individual fixed-effects analyses to reduce bias in the estimates of the effects of informal care-giving on quality of life, and combine this with a difference-in-difference approach to reduce bias in the estimated moderating impact of LTC coverage on these effects. We draw on longitudinal data for Sweden and Denmark from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected between 2004 and 2015. Both countries traditionally had generous LTC coverage, but cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark. We use this country difference in the timing of the cutbacks to shed light on effects of LTC coverage on the impact care-giving has on quality of life. Our analyses show that care-giving was more detrimental for quality of life in Sweden than in Denmark, and this difference weakened significantly when LTC coverage was reduced in Denmark, but not in Sweden. This suggests that LTC coverage shapes the impact of care-giving on quality of life.
In their everyday work, health professionals find themselves in situations that they perceive to be abusive to patients. Such situations can trigger feelings of shame and guilt, making efforts to address the problem among colleagues a challenge. This article analyzes how health professionals conceptualize abusive situations, and how they develop collective learning and explore preventive strategies. It is based on an interactive research collaboration with a hospice and palliative care clinic in Sweden during 2016-2017. The empirical material consists of group discussions and participant observations collected during interactive drama workshops for all clinic staff. Based on three types of challenges in the material, identified through thematic analysis, we establish the concept of navigation work to show how health professionals prevent or find ways out of challenging and potentially abusive situations. First, the navigation of care landscapes shows how staff navigate the different territories of the home and the ward, reflecting how spatial settings construct the scope of care and what professionals consider to be potentially abusive situations. Second, the negotiation of collective navigations addresses the professionals' shared efforts to protect patients through the use of physical and relational boundaries, or mediating disrupted relationships. Third, the navigation of tensions in care highlights professionals' strategies in the confined action space between coercing and neglecting patients who oppose necessary care procedures. Theoretically, the concept of navigation work draws upon work on care in practice, and sheds light on the particular kind of work care professionals do, and reflect on doing, in order to navigate the challenges of potentially abusive situations. By providing a perspective and shared vocabulary, the concept may also elicit ways in which this work can be verbalized, shared, and developed in clinical practice.
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 menâ€™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 participantsâ€™ 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, 6â€“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.
To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.
OBJECTIVE: Homecare workers play a pivotal role in palliative care, but research on their experiences is limited. The aim of this study was to describe how homecare workers in Sweden experience their work in palliative homecare.
METHOD: This qualitative study used open-ended interviews with a purposive sample of 15 homecare workers. The data was analysed by means of qualitative content analysis.
RESULTS: One main theme emerged from the analysis: upholding an ideal image of palliative work. This had four subthemes: doing good; doing their best work; feeling work satisfaction; and facing difficulties.
CONCLUSION:: Palliative care performed by homecare workers is demanding. Homecare workers need more practical support and would benefit from a care model that involves working with registered nurses, as a team, to provide humanistic care to dying patients and their relatives.
BACKGROUND: The long-term trajectories of prolonged grief are poorly understood. The aims were to examine the course of grief among bereaved disaster survivors up to six years post loss and factors predicting worse bereavement outcome. A third aim was to explore differences in grief indicators between trajectories.
METHODS: Bereaved Swedish tourists who survived the 2004 Indian Ocean tsunamis responded to surveys including the Inventory of Complicated Grief 1 to 6 years after the disaster. Latent growth mixture modeling was used to identify longitudinal trajectories of grief. Multinomial logistic regression analysis was used to examine predictors of class membership.
RESULTS: Three trajectories were identified: resilient (41% of the sample), recovering (48%), and chronic (11%). The strongest predictor of chronic grief was the loss of one's child. When examining grief indicators, the chronic trajectory was characterized by not accepting the loss, while yearning was common in all trajectories.
CONCLUSIONS: This study highlights the importance of considering how traumatically bereaved individuals can be affected by loss for several years after a disaster, especially after losing one's child. An inability to accept the loss, more so than yearning, appears to characterize bereaved survivors at risk of a chronic trajectory of grief.
BACKGROUND AND AIMS: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.
METHODS: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.
RESULTS: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.
CONCLUSIONS: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.
BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.
METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.
RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.
CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.
PURPOSE: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context.
METHODS: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated.
RESULTS: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability ( w=0.45-0.75).
CONCLUSIONS: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.