End-of-life care for cancer patients with pre-existing severe mental disorders-a systematic review.

BACKGROUND: Cancer patients with pre-existing severe mental disorders (SMDs) less frequently receive guideline recommended cancer treatment and have a higher cancer mortality. However, knowledge is needed concerning end-of-life care in this patient group. The aim of this systematic review was to provide an overview of the literature concerning end-of-life care in cancer patients with pre-existing SMD. METHODS: A systematic search was conducted in the following databases: PubMed, Embase and Science Direct and all results were downloaded to Endnote on 1st of September 2023. The review was registered on International Prospective Register of Systematic Reviews (PROSPERO) (ID: CRD42023468571). The quality of the studies was assessed according to the Newcastle-Ottawa Scale. RESULTS: Ten studies fulfilling the inclusion criteria were included. There was a recurring pattern indicating a difference between the end-of-life care received by cancer patients with SMD, compared to those without. Cancer patients with pre-existing SMD received more palliative end-of-life care but less high-intensive-end-of-life (HIEOL) care, e.g., less hospitalisations and chemotherapy at the end of life, and died less frequently at hospital. CONCLUSIONS: The study indicates that patients with pre-existing SMD and cancer more often received palliative end-of-life care and less HIEOL care compared to controls. Further research regarding the difference in end-of-life care is lacking, including the consequences of less intense HIEOL care for this patient group. Thus, further studies are needed to identify reasons for less intense HIEOL among cancer patients with pre-existing SMD.

Experiencing Missing Contact With Professionals and Long Term Bereavement Outcome.

CONTEXT: The Danish health care system provides palliative care for terminally ill patients and their family caregivers. However, initiatives to support family caregivers are not systematically organized. OBJECTIVES: We aimed to examine the association between self-reported experience of missing contact to health care professionals involved in palliative care, and symptoms of grief and depression three years post-loss. METHODS: We conducted a prospective population-based survey of 3635 family caregivers to terminally ill patients. At six months follow-up, the caregivers reported whether they missed contact to the general practitioner, home care nurse, hospital staff, and/or palliative care team. Associations between missing contact and symptoms of prolonged grief (Prolonged-Grief-13) and depression (Beck Depression Inventory-II) three years after bereavement were analyzed with multivariable logistic regression analysis. RESULTS: We found that an experience of missing contact with health care professionals six months after bereavement was significantly associated with symptoms indicative of prolonged grief disorder and depression after three years. The strongest association was found for missing contact with the general practitioner with an adjusted OR = 4.0 (95%CI: 1.9;8.3) for prolonged grief and an adjusted OR = 5.2 (95% CI: 3.4;7.9) for depression. CONCLUSION: Experiencing missing contact with health care professionals shortly after bereavement was associated with adverse psychological reactions. Family caregivers may benefit from bereavement support to prevent further complications. A proactive approach with assessment of support needs and risk of complications early during the patient's illness trajectory may target support at those who needs it.

Hospitalisation and use of medication of Danish nursing home residents at the end of life.

INTRODUCTION: The end-of-life period remains sparsely investigated in Danish nursing home residents. This study aimed to estimate medication use, drug reimbursement for terminal illness and hospital admissions and to compare these estimates between two groups of nursing home residents. METHODS: This small-scale observational study was based on residents who died while residing in a nursing home in 2019. Medication use was estimated three months before the residents' death. Estimates for residents registered with a GP designated to the nursing home were compared with estimates for residents who maintained their usual GP. RESULTS: We included 67 residents (mean age: 88 years, 78% female). On average, residents with a designated GP (n = 21) received ten different medications, and residents who maintained their usual GP (n = 46) received seven. In all, 90% of residents were prescribed on average three "often inadequate" medications in their final three months of life. Furthermore, 39 (58%) residents received drug reimbursement for terminal illness; most were residents who maintained their usual GP (65% versus 43%). Among residents who had a designated GP, five (24%) died at the hospital compared with eight (17%) of the residents who maintained their usual GP. CONCLUSIONS: The residents received many drugs, including "often inadequate" medication, in the three months leading up to their death. No significant differences were found between the two groups. A stronger focus should be placed on optimising end-of-life care for nursing home residents. FUNDING: Honoraria received from the Danish Medical Association. TRIAL REGISTRATION: not relevant.

Mortality communication and post-bereavement depression among Danish family caregivers of terminal cancer patients.

PURPOSE: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008). METHODS: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative. RESULTS: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement. CONCLUSION: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions.

Exploring Functional Impairment in Light of Prolonged Grief Disorder: A Prospective, Population-Based Cohort Study.

Background: Functional impairment is essential in the diagnostic criteria for prolonged grief disorder (PGD) in the ICD-11. It refers to the negative impact on everyday life, including inability to maintain the usual level of functioning. We aimed to assess the extent of functional impairment, emotion-related role limitation, and impaired social functioning before and after bereavement, and to explore associations with PGD, as measured by the 13-item Prolonged Grief Scale (PGDPG13). Method: Relatives of terminally ill patients (n = 1,622) completed a questionnaire before and after bereavement. The questionnaire assessed "overall functional impairment" (PG-13 item) and "aspects of functional impairment" measured by mean scores of the 36-item Short Form Survey (SF-36) subscales emotional role and social functioning (0: worst; 100: best). We analyzed associations between PGDPG13 and functional impairment prior to bereavement using logistic regression models adjusted for age, gender, personal relation, education, time interval to patient's death, and pre-loss grief. Results: In total, 51% reported overall functional impairment before bereavement, 27% reported functional impairment at 6 months after bereavement, and 19% reported functional impairment at 3 years after bereavement. The mean emotional role score was 47.5 (95%CI: 45.4-49.7) before bereavement, increasing to 77.4 (95%CI: 75.7-79.0) at 3 years after bereavement, compared to 85.1 (95%CI: 77.6-92.6) in a reference sample. Mean social functioning score increased gradually reaching the mean of the reference sample at 3 years after bereavement. PGDPG13 was present in 26% of those with overall functional impairment at 6 months after bereavement, decreasing to 11% at 3 years after bereavement. Pre-bereavement measures of emotional role and social functioning were associated with PGDPG13at 6 months and 3 years after bereavement. Discussion: Overall functional impairment was prevalent as reflected in low scores on daily activities and social functioning compared to a reference sample. Functioning may be an important factor during caregiving and bereavement and pre-bereavement functional impairment was associated with PGDPG13. Future studies should investigate if maintaining daily activities and social functioning before bereavement could be key in early supportive care. Moreover, the role of functional impairment in bereavement interventions should be explored.

Poor physical and mental health predicts prolonged grief disorder: A prospective, population-based cohort study on caregivers of patients at the end of life.

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.

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.

Grief symptoms and primary care use: a prospective study of family caregivers.

BACKGROUND: Family caregivers to patients who are severely ill have high use of primary health care and psychotropic medication. However, it remains sparsely investigated whether healthcare services target the most vulnerable caregivers. AIM: This study aimed to examine associations between family caregivers' grief trajectories of persistent high-grief symptom level (high-grief trajectory) versus persistent low-grief symptom level (low-grief trajectory), as well as early contacts with GPs or psychologists and the use of psychotropic medication. DESIGN & SETTING: A population-based cohort study of family caregivers (n = 1735) in Denmark was undertaken. METHOD: The Prolonged Grief-13 (PG-13) scale measured family caregivers' grief symptoms at inclusion (during the patient's terminal illness), 6 months after bereavement, and 3 years after bereavement. Multinomial regression was used to analyse register-based information on GP consultations, psychologist sessions, and psychotropic medication prescriptions in the 6 months before inclusion. RESULTS: A total of 1447 (83.4%) family caregivers contacted their GP, and 91.6% of participants in the high-grief trajectory had GP contact. Compared with family caregivers in the low-grief trajectory, family caregivers in the high-grief trajectory had ≥4 face-to-face GP consultations (odds ratio [OR] = 2.6; 95% confidence interval [CI] = 1.3 to 5.0), more GP talk therapy (OR =4.4; 95% CI = 1.9 to 10.0), and more psychotropic medication, but not significantly more psychologist sessions (OR = 1.7; 95% CI = 0.5 to 6.6). CONCLUSION: Family caregivers in the high-grief trajectory had more contact with their GP, but their persisting grief symptoms suggest that primary care interventions for family caregivers should be optimised. Future research is warranted in such interventions and in the referral patterns to specialised mental health care.

[Life-threatening illness and the decision to resuscitate or not].

Current Danish guidance stipulates, that the physician responsible for treatment must assess, if resuscitation is medically indicated in patients with life-threatening illness. Nevertheless, terminally ill patients without medical indication for resuscitation are still asked about preferences for resuscitation rather than informed about the decision not to resuscitate. This review describes clinical dilemmas, which may arise, if these legal rights are misinterpreted. It provides a communication guide designed to assist physicians communicating with patients about the decision to resuscitate or not.

Geographical variation in palliative cancer care in a tax-based healthcare system: drug reimbursement in Denmark.

BACKGROUND: In Denmark, a tax-based universal healthcare setting, drug reimbursement for terminal illness (DRTI) should be equally accessible for all terminally ill patients. Examining DRTI status by regions provides new knowledge on inequality in palliative care provision and associated factors. This study aims to investigate geographical variation in DRTI among terminally ill cancer patients. METHODS: We linked socioeconomic and medical data from 135 819 Danish cancer decedents in the period 2007-15 to regional healthcare characteristics. We analyzed associations between region of residence and DRTI. Prevalence ratios (PR) for DRTI were estimated using generalized linear models adjusted for patient factors (age, gender, comorbidity and socioeconomic profile) and multilevel models adjusted for both patient factors and regional healthcare capacity (patients per general practitioner, numbers of hospital and hospice beds). RESULTS: DRTI allocation differed substantially across Danish regions. Healthcare capacity was associated with DRTI with a higher probability of DRTI among patients living in regions with high compared with low hospice bed supply (PR 1.13, 95% CI 1.10-1.17). Also, the fully adjusted PR of DRTI was 0.94 (95% CI 0.91-0.96) when comparing high with low number of hospital beds. When controlled for both patient and regional healthcare characteristics, the PR for DRTI was 1.17 (95% CI 1.14-1.21) for patients living in the Central Denmark Region compared with the Capital Region. CONCLUSION: DRTI status varied across regions in Denmark. The variation was associated with the distribution of healthcare resources. These findings highlight difficulties in ensuring equal access to palliative care even in a universal healthcare system.

Looking beyond the mean in grief trajectories: A prospective, population-based cohort study.

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.

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.

A process evaluation of systematic risk and needs assessment for caregivers in specialised palliative care.

BACKGROUND: Caregiving is strenuous and it may be associated with adverse psychological outcomes. During the palliative care trajectory, there are unique opportunities for providing support and preventing poor bereavement outcome. However, the tasks of palliative care staff in relation to caregivers are often unclear in the daily practice. Assessment is recommended to establish risk and needs and standards for caregiver support are available. Still, the feasibility of applying these standards among caregivers in everyday clinical practice has not been tested so far. METHODS: This study tested the feasibility of an intervention based on key elements of the "Bereavement support standards for specialist palliative care services" in a Danish specialised palliative home care team. We followed the UK Medical Research Council's guidelines for the process evaluation of complex interventions. The intervention consisted of: 1. Systematic risk and needs assessment for caregivers at care entry; 2. Interdisciplinary conference to prepare a support plan; 3. Targeted support; 4. The establishment of an electronic medical record for caregivers to document targeted support. Outcomes included the reach, fidelity and acceptability of the intervention as well as the assessment of contextual factors. RESULTS: The intervention reached 76 of 164 caregivers (46%). The interdisciplinary risk assessment and documentation of a support plan was conducted in 57 (75%) of the enrolled caregivers. Finally, a separate medical record was established according to the intervention blueprint for 62% of caregivers receiving targeted support. After managing initial challenges, palliative care staff reported that the intervention was useful and acceptable. CONCLUSION: The intervention proved feasible and useful. Still, we identified barriers to the implementation which should be taken into consideration when planning implementation of a systematic risk and needs assessment and in the establishment of medical records for caregivers.

Preloss grief in family caregivers during end-of-life cancer care: A nationwide population-based cohort study.

OBJECTIVE: Severe grief symptoms in family caregivers during end-of-life cancer trajectories are associated with complicated grief and depression after the loss. Nevertheless, severe grief symptoms during end-of-life caregiving in caregivers to cancer patients have been scarcely studied. We aimed to explore associations between severe preloss grief symptoms in caregivers and modifiable factors such as depressive symptoms, caregiver burden, preparedness for death, and end-of-life communication. METHODS: We conducted a population-based prospective study of caregivers to 9512 patients registered with drug reimbursement due to terminal illness, and 3635 caregivers responded. Of these, 2865 caregivers to cancer patients completed a preloss grief scale (Prolonged Grief 13, preloss version). Associations with factors measured during end-of-life caregiving were analyzed using logistic regression. RESULTS: Severe preloss grief symptoms were reported by 432 caregivers (15.2%). These symptoms were associated with depressive symptoms (adjusted odds ratio [OR] = 12.4; 95% CI, 9.5-16.3), high caregiver burden (adjusted OR = 8.3; 95% CI, 6.3-11.1), low preparedness for death (adjusted OR = 3.3; 95% CI, 2.5-4.4), low level of communication about dying (adjusted OR = 3.2; 95% CI, 2.2-4.4), and "too much" prognostic information (adjusted OR = 2.8; 95%, 1.7-4.6). CONCLUSIONS: Severe preloss grief symptoms were significantly associated with distress, low preparedness, and little communication during caregiving. Thus, severe preloss grief symptoms may be a key indicator for complications in caregivers of cancer patients in an end-of-life trajectory. Targeted interventions are needed to support family caregivers with severe preloss grief symptoms. Development of preloss grief assessment tools and interventions should be a priority target in future research.

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.

Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement.

OBJECTIVE: Caregivers of terminally ill patients may experience anticipatory grief or low levels of preparedness for the patient's impending death. Both concepts are related to a forewarning of the impending loss. Anticipatory grief has been suggested to be grief work before the loss, which would improve bereavement outcome, but recent studies indicate a negative impact. Hence, this review systematically investigates key issues relating to anticipatory grief and preparedness for the death; definitions, measurement tools, and potential effects on caregiver outcome. METHODS: We used a systematic approach (PRISMA statement). Databases were searched for publications during 1990-2015. Studies on adult caregivers of terminally ill adult patients were included if anticipatory grief or preparedness was assessed by a measurement tool. RESULTS: Anticipatory grief was captured in the definition "pre-loss grief." High levels of grief and low levels of preparedness during caregiving were associated with poor bereavement outcome such as complicated grief. CONCLUSIONS: The assumptions that grief work before the loss would alleviate bereavement outcome was not confirmed. Thus, the concept of anticipatory grief is questioned. High preparedness was associated with improved caregiver outcome. Additional support should be given to caregivers with pre-loss grief and low preparedness.