Background: The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking.
Aim: To describe physical and mental health status in caregivers of patients at the end of life, and to investigate whether caregivers’ health status during caregiving predict prolonged grief disorder.
Design: A population-based prospective survey was conducted. Health status was measured in caregivers during caregiving (SF-36), and prolonged grief disorder was assessed 6 months after bereavement (Prolonged Grief-13). We calculated mean scores of health status and explored the association with prolonged grief disorder using logistic regression adjusted for age, gender and education.
Setting/participants: The health in caregivers of patients granted drug reimbursement due to terminal illness in Denmark in 2012 was assessed during caregiving and 6 months after bereavement (n = 2125).
Results: The SF-36 subscale ‘role-physical’ concerning role limitations due to physical health, the ‘mental health’ component score, and all ‘mental health’ subscales showed significantly worse health in the participants than in the general population. Both poor physical health (adjusted OR: 1.05 (95% CI: 1.04–1.07)) and poor mental health (adjusted OR: 1.09 (95% CI: 1.07–1.11)) predicted prolonged grief disorder.
Conclusion: Caregivers scored lower on one physical subscale and all mental health measures than the general population. Prolonged grief disorder was predicted by poor physical and mental health status before bereavement. Future research is needed on the use of health status in systematic assessment to identify caregivers in need of support.
OBJECTIVES: End-of-life hospitalisations may not be associated with improved quality of life. Studies indicate differences in end-of-life care for cancer and non-cancer patients; however, data on hospital utilisation are sparse. This study aimed to compare end-of-life hospitalisation and place of death among patients dying from cancer, heart failure or chronic obstructive pulmonary disease (COPD).
DESIGN: A nationwide register-based cohort study.
SETTING: Data on all in-hospital admissions obtained from nationwide Danish medical registries.
PARTICIPANTS: All decedents dying from cancer, heart failure or COPD disease in Denmark between 2006 and 2015.
OUTCOME MEASURES: Data on all in-hospital admissions within 6 months and 30 days before death as well as place of death. Comparisons were made according to cause of death while adjusting for age, sex, comorbidity, partner status and residential region.
RESULTS: Among 154 235 decedents, the median total bed days in hospital within 6 months before death was 19 days for cancer patients, 10 days for patients with heart failure and 11 days for patients with COPD. Within 30 days before death, this was 9 days for cancer patients, and 6 days for patients with heart failure and COPD. Compared with cancer patients, the adjusted relative bed day use was 0.65 (95% CI, 0.63 to 0.68) for heart failure patients and 0.68 (95% CI, 0.66 to 0.69) for patients with COPD within 6 months before death. Correspondingly, this was 0.65 (95% CI, 0.63 to 0.68) and 0.70 (95% CI, 0.68 to 0.71) within 30 days before death.Patients had almost the same risk of dying in hospital independently of death cause (46.2% to 56.0%).
CONCLUSION: Patients with cancer, heart failure and COPD all spent considerable part of their end of life in hospital. Hospital use was highest among cancer patients; however, absolute differences were small.
Through a systematic review and meta-analyses, we aimed to determine predictors for place of death among children. We searched online databases for studies published between 2008 and 2019 comprising original quantitative data on predictors for place of death among children. Data regarding study design, population characteristics and results were extracted from each study. Meta-analyses were conducted using generic inverse variance method with random effects. Fourteen cohort studies met the inclusion criteria, comprising data on 106,788 decedents. Proportions of home death varied between countries and regions from 7% to 45%. Lower age was associated with higher odds of hospital death in eight studies (meta-analysis was not possible). Children categorised as non-white were less likely to die at home compared to white (pooled OR 0.6; 95% CI 0.5-0.7) as were children of low socio-economic position versus high (pooled OR 0.7; 95% CI 0.6-0.9). Compared to patients with cancer, children with non-cancer diagnoses had lower odds of home death (pooled OR 0.5; 95% CI 0.5-0.5).
Conclusion: Country and region of residence, older age of the child, high socio-economic position, 'white' ethnicity and cancer diagnoses appear to be independent predictors of home death among children.
What is Known: ; Home is often considered an indicator of quality in end-of-life care. ; Most terminally ill children die in hospitals.
What is New: ; Through a systematic review and meta-analyses, this study examined predictors for place of death among children. ; Country and region of residence, older age of the child, high socio-economic position, white ethnicity and having a cancer diagnosis appear to be independent predictors of home death among terminally ill children.
Background: Few studies have investigated the content of interventions provided in early specialised palliative care (SPC).
Objectives: To characterise the content of interventions delivered in early SPC in the Danish Palliative Care Trial (DanPaCT), a multicentre trial with six participating sites.
Methods: A retrospective qualitative and quantitative study coding all new interventions initiated by the palliative teams and documented in the medical records during the 8-week study period of DanPaCT. Interventions were categorised according to (a) symptom/problem prompting the intervention, (b) type of intervention and (c) professional(s) providing the intervention.
Results: In total, 145 patients were randomised to the SPC teams. According to the medical records, patients received a median of 3.5 (range 0–22) new interventions in the 8-week intervention-period from the palliative teams. For 24 (18%) of the patients there was no documented interventions in the medical records. The most frequent symptom/problems treated were pain, (100 interventions; 20% of interventions given) and impaired physical function (62; 13% of interventions given). The most frequent type of intervention was pharmacological (232; 42% of interventions given).
Conclusions: This is one of the first studies to meticulously investigate the content of interventions documented in the medical records for patients receiving early SPC. Diverse symptoms were treated with many different interventions. However, a relatively low number of interventions were documented. This may explain the lack of effect in DanPaCT but also questions whether all interventions were adequately documented
Trial registration number: NCT01348048
BACKGROUND: Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD).
AIM: The aim of this study was to examine possible differences between pragmatic and ideal preferences of terminally ill patients, as well as differences between asking patients about preferences concerning PoC and PoD.
METHODS: Structured interviews were performed with terminally ill cancer patients at inclusion and a follow-up questionnaire was completed 1 month later. Answers were compared using kappa (k) statistics and Pearson's c2-test.
RESULTS: Among 96 cancer patients, agreement between pragmatic and ideal preferences was statistically significantly different (p=<0.001). Agreement between preferences for PoC and PoD was high (k:0.76-0.85).
CONCLUSION: Differences exist between pragmatic and ideal EoL preferences, whereas preferences for PoC and PoD were found to be similar. These findings highlight the importance of the phrasing of questions when uncovering patients' preferences for EoL care.
BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials.
OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT).
METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve.
RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item ‘overall satisfaction with the help received from the health care system’ with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05).
CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group.
TRIAL REGISTRATION: NCT01348048.
BACKGROUND: Socio-economic factors play important roles in place of death. However, up-to-date knowledge on socio-economic determinants for place of death is warranted including analysis of collinearity between socio-economic determinants.
AIM: To examine associations between socio-economic determinants (social class, deprivation level in area of residence, income, education, occupation, urbanisation) and place of death among adult patients with life-limiting illnesses. Furthermore, to describe how these factors are operationalised and examined for collinearity.
DESIGN: A systematic review was performed (PROSPERO, record: CRD42018091218) and quality was assessed using the Newcastle-Ottawa Scale.
DATA SOURCES: A comprehensive search of PubMed, Embase, CINAHL, Scopus and PsycINFO was conducted for studies published from 1 January 2008 until the date of the search (23 March 2018) in English or Scandinavian languages.
RESULTS: Of the 1599 unique citations identified, 34 studies were eligible. Dying at home was to a high degree associated with better financial situation and living in rural areas. Furthermore, hospital death was associated with a high level of deprivation in the area of residence and being employed. Regarding educational level, we found mixed and inconclusive results.
CONCLUSION: Inequalities concerning place of death were found, and attention towards socio-economic inequality concerning place of death is necessary, especially in patients with a poor financial status, patients living in deprived and metropolitan areas and patients who are employed. Furthermore, we found a low degree of assessment for collinearity and adjustment of socio-economic variables. These issues should be considered in planning of future studies of socio-economic determinants for place of death.
OBJECTIVES: Advance care planning (ACP) can be a way to meet patients' end-of-life preferences and enhance awareness of end-of-life care. Thereby it may affect actual place of death (APOD) and decrease the rate of hospitalisations. The aim was to investigate if ACP among terminally ill patients with lung, heart and cancer diseases effects fulfilment of preferred place of death (PPOD), amount of time spent in hospital and APOD.
METHODS: The study was designed as a randomised controlled trial. Patients were assessed using general and disease-specific criteria and randomised into groups: one received usual care and one received usual care plus ACP. The intervention consisted of a discussion between a healthcare professional, the patient and their relatives about preferences for end-of-life care. The discussion was documented in the hospital file.
RESULTS: In total, 205 patients were randomised, of which 111 died during follow-up. No significant differences in fulfilment of PPOD (35% vs 52%, p=0.221) or in amount of time spent in hospital among deceased patients (49% vs 23%, p=0.074) were found between groups. A significant difference in APOD was found favouring home death in the intervention group (17% vs 40%, p=0.013).
CONCLUSION: Concerning the primary outcome, fulfilment of PPOD, and the secondary outcome, time spent in hospital, no differences were found. A significant difference concerning APOD was found, as more patients in the intervention group died at home, compared with the usual care group.
BACKGROUND: Advance care planning (ACP) has been suggested to improve the quality of life (QoL) and mental wellbeing in severely ill patients and their relatives.
AIM: To investigate the effects of ACP among patients with lung, heart and cancer diseases with an estimated life-span of up to 12 months.
METHODS: Patients and relatives were randomised into two groups: one receiving usual care and one receiving ACP and usual care. Themes from the ACP discussion were documented in patients' electronic medical file. Participants completed self-reported questionnaires four to five weeks after randomisation.
FINDINGS: In total, 141 patients and 127 relatives participated. No significant differences were found according to outcomes. However, patients with non-malignant diseases had the highest level of anxiety and depression; these patients seemed to benefit the most from ACP, though not showing statistically significant results.
CONCLUSION: No significant effects of ACP among patients with lung, heart, and cancer diseases and their relatives regarding HRQoL, anxiety, depression, and satisfaction with healthcare were found.
Background In Denmark, patients who are terminally ill have the right to drug reimbursement due to terminal illness (DRTI). DRTI, a proxy marker of planned end-of-life care, is intended to be equally accessible regardless of socioeconomic position. This study examined social and socioeconomic differences in DRTI among Danish patients who are terminally ill.
Methods This cross-sectional study based on individual-level nationwide data included all patients dying from cancer, dementia, ischaemic heart disease, chronic obstructive pulmonary disease, chronic liver disease, congestive heart failure, diabetes or stroke in 2006–2015 (n=307 188). We analysed associations between social and socioeconomic position (education, income, cohabiting status, migrant status and employment) and DRTI. Prevalence ratios (PR) and 95% CIs were estimated using log-linear models adjusted for age, gender, comorbidity, cause of death and residence.
Results Overall, 27.9% of patients received DRTI (n=85 616). A substantial difference in likelihood of receiving DRTI was observed among patients with a social and socioeconomic profile associated with the highest versus lowest probability of DRTI (adjusted PR 1.44, 95% CI 1.18 to 1.75). The probability of DRTI was higher among patients with high income compared with low income (adjusted PR 1.22, 95% CI 1.17 to 1.26). Also, living with a partner and being immigrant or descendant of such were associated with higher probability of DRTI compared with living alone and of Danish origin, whereas employment was associated with lower probability of DRTI compared with retirement.
Conclusion Social and socioeconomic position was associated with the likelihood of receiving DRTI, which indicates that planned end-of-life care is not equally accessible in Denmark.
BACKGROUND: The utilization of the health care system varies in relation to cohabitation status, but conflicting results have been found in studies investigating the association in relation to specialized palliative care (SPC).
OBJECTIVE: To investigate the association between cohabitation status and admittance to SPC; to establish whether this association differed between hospital-based palliative care team/units (mainly outpatient/home care) and hospice (mainly inpatient care).
DESIGN: A nationwide study based on the Danish Palliative Care Database, which is linked with additional registers.
MEASUREMENTS: The study population included all patients dying from cancer in Denmark between 2010 and 2012 (n = 44,480). The associations were investigated using logistic regression analysis adjusted for sex, age, diagnosis, and geography and standardized absolute prevalences.
RESULTS: Comparison with cohabiting patients showed that overall admittance to SPC was lowest among patients who were widows/widowers (odds ratio [OR] = 0.86; 95% confidence interval [CI]: 0.81–0.91) and those who had never married (OR = 0.74; 95% CI: 0.68–0.80). Patients living alone were more likely to be admitted to a hospice [e.g., divorced OR = 1.41 (95% CI: 1.31–1.52)] than to a hospital-based palliative care team/unit [e.g., never married OR = 0.64 (95% CI: 0.59–0.70)] compared with cohabiting patients. Standardized prevalences of overall admittance to SPC showed a similar pattern, for example, admittance was highest (41%) for patients cohabiting and lowest (30%) for patients who had never married..
CONCLUSION: Cohabiting individuals were favored in admittance to SPC.
Compared with cohabiting patients it is unlikely that patients living alone have lower needs for SPC: results point toward inequity in admittance to specialist health care, a problem that should be addressed.
Background: Most individuals adjust to the loss of a close person, but some experience adverse grief that challenges everyday life. No previous study has examined the development of grief symptoms in trajectories over time. We aimed to investigate trajectories of grief symptoms in bereaved partners and non-partners of severely ill patients starting before death until three years after death of the patient.
Method: We conducted a prospective population-based cohort study including 1138 partners and 597 non-partners of terminally ill patients. Participants completed the Prolonged Grief-13 scale pre-loss, six months post-loss, and three years post-loss. On this basis, we developed semi-parametric group-based trajectory models. Multinomial logistic regression models estimated, odds ratios (ORs) with 95% confidence intervals (CIs) between selected characteristics: age, gender, educational level, the patient's survival time, and types of grief trajectories.
Results: We identified five specific grief trajectories for partners and four for non-partners. Low grief was identified in 34% of partners and 45% of non-partners, moderate/decreasing grief in 30% of partners and 31% of non-partners, high/decreasing grief in 20% of partners and 16% of non-partners, and high grief in 7% of partners and 8% of non-partners. In addition, a late grief trajectory was identified in 10% of partners. Low education compared to high education was associated with adverse grief trajectories (OR = 0.19 (95% CI = 0.80, 0.43) for partners following a high grief trajectory).
Conclusions: This study is the first to systematically describe specific trajectories of grief based on grief symptoms. The majority had a low or decreasing grief trajectory, whereas minor groups of partners and non-partners had a high grief trajectory, and a group of partners had a late grief trajectory. A consistent vulnerability factor was low education. Bereaved individuals may benefit from information on possible patterns of grief development, including adverse grief trajectories.
INTRODUCTION: Denmark has been ranked low regarding the extent of teaching in palliative care (PC) at medical schools although the Danish Health Authority recommends that all doctors have basic knowledge of PC. The aim of this study was to investigate the contents of and time spent on teaching in PC at the four Danish medical schools and to compare results with recommendations from the European Association of Palliative Care (EAPC).
METHODS: Data were collected by examining university curricula, course catalogues, etc., using search words based on recommendations from the Palliative Education Assessment Tool and by a questionnaire survey among the university employees responsible for semesters or courses in Danish medical schools.
RESULTS: Teaching in palliative medicine at Danish medical schools is generally sparse and mainly deals with pain management and general aspects of PC. Compared to European recommendations, teaching in, e.g., ethics, spirituality, teamwork and self-reflection is lacking. Furthermore, PC training does not reach the recommended minimum of 40 hours, and examinations in PC are not held. As from the autumn of 2017, the University of Southern Denmark has offered a course that expands teaching in PC and thereby improves compliance with EAPC recommendations; the remaining three medical schools do not, to our knowledge, have any specific plans to increase the extent of teaching activities in palliative medicine.
CONCLUSIONS: Teaching in palliative medicine is sparse at all four medical schools in Denmark and should be strengthened to meet Danish as well as European recommendations.
FUNDING: No funding was used for this study.
TRIAL REGISTRATION: not relevant.
BACKGROUND: The perspectives of patients and relatives are important in the improvement of the quality of health care. However, the quality of end-of-life care has not been systematically evaluated in Scandinavia.
AIM: To develop or adapt and subsequently validate a questionnaire assessing the quality of end-of-life care in Denmark. The questionnaire was intended for bereaved relatives in order to assess the quality of care in the last 3 months of the patient's life and the circumstances surrounding death.
DESIGN AND DATA SOURCES: Based on the literature and interviews with 15 bereaved relatives and 17 healthcare professionals, relevant topics to include in a questionnaire were identified. The topics were prioritized by 100 bereaved relatives and subsequently compared to existing questionnaires. The chosen questionnaire was tested by cognitive interviews with 36 bereaved relatives.
RESULTS: Most of the important topics were covered by the Views of Informal Carers' Evaluation of Services-Short Form, but not all Danish settings (e.g. home care by a palliative team) were covered. These settings were added to the Views of Informal Carers' Evaluation of Services-Short Form, and a few adaptations were made before a Danish version of the Views of Informal Carers' Evaluation of Services-Short Form was tested by cognitive interviews. This cultural validation showed that the slightly adapted Danish version was perceived as relevant, understandable, and acceptable. Furthermore, the cognitive interviews gave insight in the comprehension and interpretation of Views of Informal Carers' Evaluation of Services-Short Form items.
CONCLUSION: With a few adaptations, the British Views of Informal Carers' Evaluation of Services-Short Form was relevant in a Danish setting.
BACKGROUND: Previous studies of associations between home visits by general practitioners and end-of-life care for cancer patients have been subject to confounding.
AIM: To analyse associations between general practitioners' propensity to pay home visits and the likelihood of hospitalisation and dying out of hospital among their cancer patients.
DESIGN: A national register cohort study with an ecological exposure. Standardised incidence rates of general practitioner home visits were calculated as a measure for propensity. Practices were grouped into propensity quartiles. Associations between propensity groups and end-of-life outcomes for cancer patients aged 40 or above were calculated.
SETTING/PARTICIPANTS: Danish general practitioners and citizens aged 40 or above were included from 2003 to 2012.
RESULTS: We included 2670 practices with 2,518,091 listed patients (18,364,679 person-years); of whom 116,677 died from cancer. General practitioners were grouped into quartiles based on the general practitioners' propensity to pay home visits, which varied 6.6-fold between quartiles. Cancer patients in Group 4 (highest propensity) were less hospitalised than patients in Group 1 (lowest propensity): odds ratio: 1.13 (95% confidence interval: 1.08; 1.17) for 3 bed-days and odds ratio: 0.95 (0.91-0.99) for 20 bed-days. Group 4 patients were more likely to die out of hospital (odds ratio: 1.20 (1.16; 1.24)) than Group 1 patients.
CONCLUSION: We found a dose-response-like association between general practitioners' higher propensity to pay home visit and their patients' likelihood of less end-of-life hospitalisation and more often dying out of hospital.
Le but de cette étude est d'examiner les associations entre l'évaluation du traitement palliatif à domicile que font les proches endeuillés et (1) le lieu de décès et (2) l'implication de l'infirmière libérale. Cette étude indique que mourir à domicile est positivement associé à une forte probabilité que les proches endeuillés évalueront la trajectoire palliative à domicile comme réussie.
A partir de trois focus groups de 14 endeuillés, les auteurs montrent que les proches expérimentent des soins palliatifs insuffisants principalement dus aux problèmes d'organisation et de culture parmi les professionnels. Les soins palliatifs dans les lieux de soins primaires en général ont besoin d'amélioration et l'attention devrait être portée sur la "professionnalisation" des proches et sur le besoin de trouver un équilibre entre leurs besoins, leurs souhaits et les ressources existantes en soins de fin de vie et en soutien de deuil.