Children with palliative care needs - the landscape of the nordic countries.

BACKGROUND: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. METHODS: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. RESULTS: In total, the Nordic child population comprises around six million children (0-19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. CONCLUSION: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Healthcare Costs at the End of Life for Patients with Non-cancer Diseases and Cancer in Denmark.

OBJECTIVES: To examine costs of care from a healthcare sector perspective within 1 year before death in patients with non-cancer diseases and patients with cancer. METHODS: This nationwide registry-based study identified all Danish citizens dying from major non-cancer diseases or cancer in 2010-2016. Applying the cost-of-illness method, we included costs of somatic hospitals, including hospital-based specialist palliative care, primary care, prescription medicine and hospice expressed in 2022 euros. Costs of patients with non-cancer diseases and cancer were compared using regression analyses adjusting for sex, age, comorbidity, residential region, marital/cohabitation status and income level. RESULTS: Within 1 year before death, mean total healthcare costs were €27,185 [95% confidence interval (CI) €26,970-27,401] per patient with non-cancer disease (n = 109,723) and €51,348 (95% CI €51,098-51,597) per patient with cancer (n = 108,889). The adjusted relative total healthcare costs, i.e. the ratio of the mean costs, of patients with non-cancer diseases was 0.64 (95% CI 0.63-0.66) at 12 months before death and 0.91 (95% CI 0.90-0.92) within 30 days before death compared with patients with cancer. Mean costs of hospital-based specialist palliative care and hospice in the year leading up to death were €17 (95% CI €13-20) and €90 (95% CI €77-102) per patient with non-cancer disease but €1552 (95% CI €1506-1598) and €3411 (95% CI €3342-3480) per patient with cancer. CONCLUSIONS: Within 1 year before death, total healthcare costs, mainly driven by hospital costs, were substantially lower for patients with non-cancer diseases compared with patients with cancer. Moreover, the costs of hospital-based specialist palliative care and hospice were minimal for patients with non-cancer diseases.

Predictors for place of death among children:A systematic review and meta-analyses of recent literature.

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.

What socio-economic factors determine place of death for people with life-limiting illness? A systematic review and appraisal of methodological rigour.

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.

Socioeconomic inequality in drug reimbursement during end-of-life care: a nationwide study.

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.

Is admittance to specialised palliative care among cancer patients related to sex, age and cancer diagnosis? A nation-wide study from the Danish Palliative Care Database (DPD).

BACKGROUND: Specialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were to investigate whether cancer patients' admittance to SPC in Denmark varied in relation to sex, age and diagnosis, and whether the patterns differed by type of institution (hospital-based palliative care team/unit, hospice, or both). METHODS: This was a register-based study of adult patients living in Denmark who died from cancer in 2010-2012. Data sources were the Danish Palliative Care Database, Danish Register of Causes of Death and Danish Cancer Registry. The associations between the explanatory variables (sex, age, diagnosis) and admittance to SPC were investigated using logistic regression. RESULTS: In the study population (N = 44,548) the overall admittance proportion to SPC was 37%. Higher odds of overall admittance to SPC were found for women (OR = 1.23; 1.17-1.28), younger patients (<40 compared with 80+ years old) (OR = 6.44; 5.19-7.99) and patients with sarcoma, pancreatic and stomach cancers, whereas the lowest were for patients with haematological malignancies. The higher admission found for women was most pronounced for hospices compared to hospital-based palliative care teams/units, whereas higher admission of younger patients was more pronounced for hospital-based palliative care teams/units. Patients with brain cancer were more often admitted to hospices, whereas patients with prostate cancer were more often admitted to hospital-based palliative care teams/units. CONCLUSION: It is unlikely that the variations in relation to sex, age and cancer diagnoses can be fully explained by differences in need. Future research should investigate whether the groups having the lowest admittance to SPC receive sufficient palliative care elsewhere.

Predictors of Complicated Grief and Depression in Bereaved Caregivers: A Nationwide Prospective Cohort Study.

CONTEXT: Complicated grief and depressive symptoms in bereaved caregivers have been associated with female gender, spousal relation, and preloss psychological distress, but population-based, prospective studies are scarce. OBJECTIVES: We aimed to investigate whether severe preloss grief and depressive symptoms, caregiver burden, preparedness for death, communication about dying, and socioeconomic factors predicted complicated grief and postloss depressive symptoms. METHODS: We conducted a population-based, prospective Danish survey of caregivers. Questionnaires for their closest caregiver were mailed to patients registered with drug reimbursement for terminal illness. Of the 3635 (38%) responding caregivers, 2420 were bereaved within six months. Of these, 2215 (88%) completed a postloss follow-up questionnaire. Associations between complicated grief (Prolonged Grief-13), postloss depressive symptoms (Beck Depression Inventory-II), and predictive factors were analyzed with mutually adjusted multivariable logistic regression models. RESULTS: At six-month follow-up, 7.6% reported complicated grief and 12.1% reported postloss depressive symptoms, whereas the levels of grief and depressive symptoms were higher preloss. Complicated grief and postloss depressive symptoms were predicted by severe preloss grief symptoms (adjusted odds ratio [OR] = 3.8, 95% CI: 2.4-6.1), preloss depressive symptoms (adjusted OR = 5.6, 95% CI: 3.5-9.0), being a partner (adjusted OR = 2.2, 95% CI: 1.2-3.7), and low educational level (adjusted OR = 2.0, 95% CI: 1.2-3.7). Complicated grief was not predicted by age and gender, whereas postloss depressive symptoms were predicted by young age, female gender, and low preparedness for death. CONCLUSION: Severe preloss grief and depressive symptoms were key predictors of postloss complicated grief and depressive symptoms. Systematic assessment may identify caregivers with a high risk profile who need targeted support.

Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study.

PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings. Therefore, caregiver studies with a population-based approach are needed. We aimed to describe socio-economic characteristics, situational factors, pre-loss grief symptoms, depressive symptoms, caregiver burden, and health status in a general population of caregivers to terminally ill patients. METHOD: We conducted a nationwide population-based cohort study. Caregivers were systematically recruited through patients registered with drug reimbursement for terminal illness in 2012. Data on socio-economic characteristics was mainly obtained from Danish registries, whereas data on situational factors, distress, and health was measured in questionnaires. RESULTS: Of patients to responding caregivers (n = 3635), 89 % suffered from cancer, predominantly lung cancer (23 %). Of responding caregivers, 62 % were partners and 29 % were adult children. In total, one third of caregivers reported severe outcome, 15 % reported severe pre-loss grief symptoms, 16.1 % had moderate to severe depressive symptoms, and 12 % experienced high caregiver burden. Partners had the highest levels of pre-loss grief and depressive symptoms, while adult children reported the highest levels of caregiver burden. CONCLUSIONS: From this cohort, which was estimated to be representative of caregivers to terminally ill relatives in the general population, we found high levels of pre-loss grief, depressive symptoms, and/or caregiver burden in one third of all caregivers. These findings call for increased focus on caregivers' need of support.

Socioeconomic position and place of death of cancer patients.

OBJECTIVE: Most terminally ill patients and relatives prefer care and death to occur at home. However, in many cases patients die in hospital and the question arises whether social inequity in palliative care exists. The aim of this study was to analyse associations between dying at home and demographic and socioeconomic characteristics adjusted for healthcare utilisation among Danish cancer patients. METHOD: Population-based, cross-sectional register study in Aarhus County, Denmark. 599 deceased adults who died from cancer from 1 March to 30 November 2006 in a well-defined geographical area were identified. Based on unique personal identifier numbers, socioeconomic data and healthcare utilisation from different registers were retrieved and analysed. RESULTS: Multivariate analysis showed that dying at home was negatively associated with, first, being either 50-59 (prevalence ratio (PR): 0.67 (95% CI 0.45 to 0.99)) or 70-79 years of age (PR: 0.83 (95% CI 0.70 to 0.99)) compared with being 80 years or above; second, a middle personal income compared with a high income (PR: 0.86 (95% CI 0.75 to 1.00)); and, third, being employed or having a leadership position compared with being unemployed/student/receiving social security (PR: 0.72 (95% CI 0.53 to 0.98)). CONCLUSION: The found socioeconomic differences in whether death occurred at home or at institutions indicate that age, income and social class must be taken into account when palliative care services engage in fulfilling preferences of dying at home. This may lead to more equality in the possibility of dying at home, despite differences in socioeconomic level.

Qualitative description - the poor cousin of health research?

BACKGROUND: The knowledge and use of qualitative description as a qualitative research approach in health services research is limited.The aim of this article is to discuss the potential benefits of a qualitative descriptive approach, to identify its strengths and weaknesses and to provide examples of use. DISCUSSION: Qualitative description is a useful qualitative method in much medical research if you keep the limitations of the approach in mind. It is especially relevant in mixed method research, in questionnaire development and in research projects aiming to gain firsthand knowledge of patients', relatives' or professionals' experiences with a particular topic. Another great advantage of the method is that it is suitable if time or resources are limited. SUMMARY: As a consequence of the growth in qualitative research in the health sciences, researchers sometimes feel obliged to designate their work as phenomenology, grounded theory, ethnography or a narrative study when in fact it is not. Qualitative description might be a useful alternative approach to consider.