Medical costs of Swedish nursing home residents at the end of life: a retrospective observational registry study.

BACKGROUND: There are many studies of medical costs in late life in general, but nursing home residents' needs and the costs of external medical services and interventions outside of nursing home services are less well described. METHODS: We examined the direct medical costs of nursing home residents in their last year of life, as well as limited to the period of stay in the nursing home, adjusted for age, sex, Hospital Frailty Risk Score (HFRS), and diagnosis of dementia or advanced cancer. This was an observational retrospective study of registry data from all diseased nursing home residents during the years 2015-2021 using healthcare consumption data from the Stockholm Regional Council, Sweden. T tests, Wilcoxon rank sum tests and chi-square tests were used for comparisons of groups, and generalized linear models (GLMs) were constructed for univariable and multivariable linear regressions of health cost expenditures to calculate risk ratios (RRs) with 95% confidence intervals (95% CIs). RESULTS: According to the adjusted (multivariable) models for the 38,805 studied nursing home decedents, when studying the actual period of stay in nursing homes, we found significantly greater medical costs associated with male sex (RR 1.29 (1.25-1.33), p < 0.0001) and younger age (65-79 years vs. ≥90 years: RR 1.92 (1.85-2.01), p < 0.0001). Costs were also greater for those at risk of frailty according to the Hospital Frailty Risk Score (HFRS) (intermediate risk: RR 3.63 (3.52-3.75), p < 0.0001; high risk: RR 7.84 (7.53-8.16), p < 0.0001); or with advanced cancer (RR 2.41 (2.26-2.57), p < 0.0001), while dementia was associated with lower medical costs (RR 0.54 (0.52-0.55), p < 0.0001). The figures were similar when calculating the costs for the entire last year of life (regardless of whether they were nursing home residents throughout the year). CONCLUSIONS: Despite any obvious explanatory factors, male and younger residents had higher medical costs at the end of life than women. Having a risk of frailty or a diagnosis of advanced cancer was strongly associated with higher costs, whereas a dementia diagnosis was associated with lower external, medical costs. These findings could lead us to consider reimbursement models that could be differentiated based on the observed differences.

Fluid therapy is associated with lower care quality and higher symptom burden during last days of life of patients with cancer - a population-based register study.

BACKGROUND: Parenteral fluid (PF) therapy of patients in end-of-life (EOL) is controversial. The purpose of this study was to assess associations between PF, quality of the EOL care process and symptom burden in dying cancer patients, using a population-based approach. METHODS: This was a nationwide retrospective register study of all adult cancer deaths with documented information on PF in the last 24 h of life as reported to the Swedish Register of Palliative Care during a three-year period (n = 41,709). Prevalence and relief of symptoms during the last week of life as well as EOL care process quality indicators were assessed in relation to PF in those patients who had a documented decision to focus on EOL care (immediately dying, n = 23,112). Odds ratios were calculated, adjusting for place of death (hospital vs. non-hospital). RESULTS: PF was administered to 30.9% of immediately dying patients in hospitals compared to 6.5% outside of hospitals. PF was associated with a higher likelihood for breathlessness and nausea. In patients screened for EOL symptoms with a validated instrument, PF was inversely associated with the likelihood of complete relief of breathlessness, respiratory secretions, anxiety, nausea and pain. Several palliative care quality indicators were inversely associated with PF, including EOL conversations and prescriptions of injectable drugs as needed. These associations were more pronounced in hospitals. CONCLUSIONS: Parenteral fluid therapy in the last 24 h of life was associated with inferior quality of the EOL care process and with increased symptom burden in imminently dying cancer patients.

Pain prevalence and pain relief in end-of-life care - a national registry study.

BACKGROUND: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce. METHODS: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used. RESULTS: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17-21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73-87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group. CONCLUSIONS: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying. TRIAL REGISTRATION: No trial registration was made as all patients were deceased and all data were retrieved from The Swedish Register of Palliative Care database.

Age and co-morbidities as independent risk factors of infections leading to hospital admission in the last year of life among the elderly: A retrospective registry-based study.

Background: The immune system declines with age, but the impact of chronological age may be affected by sex, co-morbidities, and sociodemographic factors. Objective: The article aims to study infections associated with hospital admission in the elderly in their last year of life and the impact of age, sex, co-morbidities, and sociodemographic factors. Method: A retrospective study based on registry data covering all care visits in Stockholm Region, Sweden, for 7 years was conducted. All deceased subjects with at least one hospital admission with infection as the main diagnosis in the last year of life were compared with subjects with no such admission. Subjects were categorized into three different age-groups 65-79, 80-89, and 90 years and above. Co-morbidity was measured by the Charlson Comorbidity Index (CCI) and sociodemographic factors were assessed using the 'Mosaic-system'. Subjects living in nursing homes were analyzed separately. Uni- and multivariable logistic regressions were conducted. Results: Of the 55,238 subjects in the study population, 14,192 (26%) had at least one hospital admission due to infection in the last year of life. The risk of having a severe infection increased with age, adjusted odds ratio (OR): 1.30 (1.25-1.36), and 1.60 (1.52-1.69) for the age-groups 80-89 and ≥ 90 compared to the age-group 65-79. The most important factor for infection was a high co-morbidity score; adjusted OR: 1.75 (1.68-1.82). Male sex and living in a less affluent area were weaker risk factors for infections. Conclusion: Chronological age and co-morbidities are independent risk factors of infections associated with hospital admission in the last year in life while male sex and sociodemographic factors have less impact.

Patients with both cancer and psychosis-to what extent do they receive specialized palliative care.

BACKGROUND: Schizophrenia and advanced cancer are complex conditions that impact life expectancy. This study aimed to examine the receipt of specialized palliative care (SPC) in patients with metastatic cancer and a coexisting diagnosis of psychosis compared to patients with cancer only. Secondary objectives included analyzing differences in emergency visits and place of death in relation to receipt of SPC. PATIENTS AND METHODS: This retrospective, observational registry study utilized health care consumption data from the Stockholm Regional Council. We included 23,056 patients aged >18 years who died between 2015 and 2021 with a diagnosis of metastatic cancer, hematologic malignancy, or malignant brain tumor in the Stockholm Gotland region. Among them, 320 patients had a concomitant diagnosis of psychosis. RESULTS: Patients with cancer and psychosis were less likely to receive SPC compared to patients with cancer only (61% vs. 74%, p < 0.001). Additionally, they were, on average, four and a half years younger at the time of death (68.5 years vs. 73.1 years, p < 0.0001), more likely to reside in nursing homes (25% vs. 11%, p < 0.0001), and had a higher prevalence of low area-based socioeconomic status (46% vs. 32%, p < 0.0001). Receipt of SPC was associated with reduced frequency of emergency visits and a higher probability of place of death to be at home or in a care facility outside the acute hospital. CONCLUSIONS: Patients with a coexisting diagnosis of psychosis and metastatic cancer have a lower probability of receiving SPC. Receipt of specialized palliative care was associated with reduced number of unplanned emergency visits and a lower risk for death at an acute hospital. Efforts are needed to ensure equitable provision of SPC for patients with cancer and psychosis.

Partly unequal receipt of healthcare in last month of life in amyotrophic lateral sclerosis: a retrospective cohort study of the Stockholm region.

Context: In amyotrophic lateral sclerosis (ALS), equal care is important, given that the disease often has complex symptoms at the end of life. Objectives: The aim was to study the possible associations between demographic and clinical factors, including age, sex, and frailty, with acute healthcare utilization in the last month of life, measured by emergency room (ER) visits, admissions to acute hospitals and, acute hospitals as place of death, among patients with ALS. A second aim was to study whether receipt of specialized palliative care (SPC) affects above-mentioned healthcare utilization. Methods: Observational, retrospective study based on Region Stockholm's administrative data warehouse (VAL) in Sweden. Data were retrieved for 2015-2021 and analyzed with descriptive statistics and logistic regression models. Results: All deceased patients (n = 448) ≥18 years with ALS were included. The mean age was 70.5 years, 46% were women and 58% had risk of frailty according to Hospital Frailty Risk Score (HFRS). Ninety-nine (22%) were nursing home residents and 49% received SPC. The receipt of SPC in patients with ALS was equal in relation to gender, socio-economic standing, frailty, and age <75 years. Patients ≥75 years, those with dementia and/or residing in nursing homes (NH) were less likely to receive SPC (P = 0.01, P = 0.03 and P = 0.002, respectively). Receipt of SPC reduced ER visits (29% vs. 48%, P < 0.001) and deaths at hospital (12% vs. 48%, P <0.001). Patients who were frail, had a higher risk of ER visits and were more likely to die at an acute hospital setting (P < 0.001 and P = 0.004). NH residents were less likely to have ER visits and to die in hospital (P = 0.002 and P = 0.005). Conclusions: The results indicate partly unequal distribution of palliative care, however the actual, individual preferences cannot be deducted from registry studies. All patients with ALS should be offered SPC when needed. Key message: This register study shows that receipt of SPC in patients with ALS is equal in relation to gender, socioeconomic standing, frailty, and age <75 years, while those ≥75 years, with dementia, or residing in NH were somewhat less likely to receive SPC. Receipt of SPC reduces ER visits and acute hospital admissions.

Parenteral Hydration in Dying Patients With Cancer: A National Registry Study.

CONTEXT: Clinically assisted hydration during end-of-life care among patients with cancer is controversial; practice varies between clinical settings and countries, and there is a lack of evidence. OBJECTIVES: To examine whether breathlessness, respiratory secretion, or confusion correlates with receiving parenteral hydration during end of life, adjusted for sex, age, and place of death. METHODS: The Swedish Register of Palliative Care database was used to collect data about the usage of parenteral hydration during the last day of life, and the occurrence of three symptoms during the last week. Adults dying from cancer during 2011-2021 in hospitals, in residential care homes, and within specialized palliative care were included. Correlation between parenteral hydration and symptoms was examined using χ2-test and logistic regression. RESULTS: A total of 147,488 patients were included in the study. Parenteral hydration was more often prescribed to younger persons, to men, and in acute hospitals (compared to other settings), p < 0.001 in all three comparisons. Patients with hematological malignancies (20%) and ovarian cancer (16%) were most likely to receive parenteral hydration, while those with brain tumors (6%) were least likely. The presence of all three analyzed symptoms during the last week (breathlessness, respiratory secretion, and confusion) were significantly correlated with having received parenteral hydration during the last day of life (p < 0.001). In the final logistic regression model adjusted for age, sex, and place of death, the only symptom with remaining correlation to parenteral hydration was breathlessness (OR 1.56, 95% CI 1.50-1.6). CONCLUSION: There is an association between parenteral hydration and increased breathlessness in patients with cancer. Provision of parenteral hydration is more prevalent in men, younger patients, and those with hematological malignancies or ovarian cancer, and most widespread in acute hospital settings.

Nursing Home Residents With Dementia at End of Life: Emergency Department Visits, Hospitalizations, and Acute Hospital Deaths.

Background: Most nursing home (NH) residents do not benefit from health care at an emergency room (ER) or inpatient care at an emergency hospital during the end-of-life period. Therefore, a low number of unplanned admissions during the last month of life are considered good quality of care. Objectives: This study examined ER visits, hospital admissions, and place of death in NH residents with and without dementia in the last month of life, with the aim of answering the question, "Are NH residents with dementia provided with equal health care in their last stage of life?" Design: An observational retrospective study of registry data from all NH residents who died during the years 2015-2019, using health care consumption data from the Stockholm Regional Council, Sweden. Results: Dementia was associated with a higher adjusted odds ratio (aOR) for ER visits (aOR 1.32, p < 0.0001) and acute admissions (aOR 1.30, p < 0.0001) (logistic regression, including sensitivity analysis). Being male, young, and having multiple comorbidities (Charlson Comorbidity Index) and frailty (Hospital Frailty Risk Score) were all independently associated with higher aORs for the same outcomes and also with hospital deaths. Conclusion: Dementia is associated with increased ER referrals and acute in-hospital care. Comorbidities and frailty were strongly associated with an increase in hospital deaths. In addition, men are sent to emergency hospitals more frequently than women, and older residents are sent to the hospital to a lesser extent than younger residents, which cannot be explained by the factors studied.

The Impact of Frailty on Palliative Care Receipt, Emergency Room Visits and Hospital Deaths in Cancer Patients: A Registry-Based Study.

BACKGROUND: Eastern Cooperative Oncology Group (ECOG) performance status is used in decision-making to identify fragile patients, despite the development of new and possibly more reliable measures. This study aimed to examine the impact of frailty on end-of-life healthcare utilization in deceased cancer patients. METHOD: Hospital Frailty Risk Scores (HFRS) were calculated based on 109 weighted International Classification of Diseases 10th revision (ICD-10) diagnoses, and HFRS was related to (a) receipt of specialized palliative care, (b) unplanned emergency room (ER) visits during the last month of life, and (c) acute hospital deaths. RESULTS: A total of 20,431 deceased cancer patients in ordinary accommodations were studied (nursing home residents were excluded). Frailty, as defined by the HFRS, was more common in men than in women (42% vs. 38%, p < 0.001) and in people residing in less affluent residential areas (42% vs. 39%, p < 0.001). Patients with frailty were older (74.1 years vs. 70.4 years, p < 0.001). They received specialized palliative care (SPC) less often (76% vs. 81%, p < 0.001) but had more unplanned ER visits (50% vs. 35%, p < 0.001), and died more often in acute hospital settings (22% vs. 15%, p < 0.001). In multiple logistic regression models, the odds ratio (OR) was higher for frail people concerning ER visits (OR 1.81 (1.71-1.92), p < 0.001) and hospital deaths (OR 1.66 (1.51-1.81), p < 0.001), also in adjusted models, when controlled for age, sex, socioeconomic status at the area level, and for receipt of SPC. CONCLUSION: Frailty, as measured by the HFRS, significantly affects end-of-life cancer patients and should be considered in oncologic decision-making.

Symptom Management and Support in Dying Patients with Cancer and Coronavirus Disease-19-A Register-Based Study.

OBJECTIVE: Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care. METHODS: Patients with both cancer and COVID-19 who died in hospitals (n = 430) and within SPC (n = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death. RESULTS: Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; p < .001), while pain was less common (65% and 78%, respectively; p < .001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (p = .014 to p < .001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (p < .001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (p < .001). CONCLUSION: More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.

Specialized Palliative Care for Patients with Chronic Heart Failure at End of Life: Transfers, Emergency Department Visits, and Hospital Deaths.

Objective: Specialized palliative care (SPC) may contribute to improved quality of life in patients with life-limiting chronic heart failure (CHF). This study examined SPC and possible differences in the care process regarding emergency department (ED) visits, transfers, and place of death for severely ill patients with CHF. Materials and Methods: This retrospective observational registry study used the health care consumption data from the Stockholm Regional Council. Logistic regression analyses of age, sex, palliative care, comorbidities, and socioeconomic status were performed. Results: Of the 4322 individuals who died of heart failure between 2015 and 2019 and did not reside in a nursing home, 24% received SPC. Receiving SPC was associated with a lower odds ratio (OR) of ED visits (OR 0.24, p < 0.0001), unplanned transfers (OR 0.39, p < 0.0001), and emergency hospital as a place of death (OR 0.10, p < 0.0001). Furthermore, a better socioeconomic situation, younger age, and fewer comorbidities were associated with a lower OR of ED visits and transfers (p < 0.0001 to p = 0.013 in different comparisons). Multiple comorbidities (p < 0.0002) and younger age (p < 0.0001) were associated with a higher OR of emergency hospitals as a place of death. Conclusion: Approximately one-quarter of patients who died of heart failure received SPC. Receipt of SPC was associated with a significantly reduced number of ED visits, transfers between health care services, and risk of dying in emergency hospitals.

Dying with Cancer and COVID-19, with Special Reference to Lung Cancer: Frailty as a Risk Factor.

Older age and frailty have been associated with COVID-19 deaths, but frailty has seldom been studied in the context of cancer. The aim of this paper was therefore to study frailty (measured using the Hospital Frailty Risk Score) and other risk factors in patients who died with advanced cancer and a concomitant COVID-19 infection, with special reference to lung cancer. Of 4312 patients who died with cancer, 282 had concomitant COVID-19 (within the last 30 days), and these patients were significantly older, more often men, and residents of nursing homes. They often had less access to specialized palliative care, and they died more often in acute hospital settings. Patients with cancer who died with COVID-19 were more often frail (57% vs. 45%, p = 0.0002), and frailty was independently associated with COVID-19-related deaths, both in univariable and multivariable regression models, as well as when controlling for age, sex, socioeconomic factors on an area level, and comorbidity (measured using the Charlson Comorbidity Index). In the final multivariable model, where patients with cancer who died in nursing homes were excluded, belonging to the high-risk frailty group (OR 2.07 (1.31-3.27), p = 0.002) was the strongest prognostic variable in the model. In a separate analysis of a subgroup of deaths due to lung cancer (n = 653, of which 45 deaths occurred with concomitant COVID-19), the above associations were not significant, possibly due to too-few cases. In conclusion, frailty is a strong predictor of cancer deaths and should be addressed in cancer care.

Acute healthcare utilization in end-of-life among Swedish brain tumor patients - a population based register study.

BACKGROUND: Patients with progressive primary brain tumors commonly develop a spectrum of physical as well as cognitive symptoms. This places a large burden on family members and the condition's complexity often requires frequent health care contacts. We investigated potential associations between sociodemographic or socioeconomic factors, comorbidity or receipt of specialized palliative care (SPC) and acute healthcare utilization in the end-of-life (EOL) phase. METHODS: A population-based retrospective study of all adult patients dying with a primary malignant brain tumor as main diagnosis in 2015-2019 in the Stockholm area, the most densely populated region in Sweden (N = 780). Registry data was collected from the Stockholm Region´s central data warehouse (VAL). Outcome variables included emergency room (ER) visits or hospitalizations in the last month of life, or death in acute hospitals. Possible explanatory variables included age, sex, living arrangements (residents in nursing homes versus all others), Charlson Comorbidity Index, socio-economic status (SES) measured by Mosaic groups, and receipt of SPC in the last three months of life. T-tests or Wilcoxon Rank Sum tests were used for comparisons of means of independent groups and Chi-square test for comparison of proportions. Associations were tested by univariable and multivariable logistic regressions calculating odds ratios (OR). RESULTS: The proportion of patients receiving SPC increased gradually during the last year of life and was 77% in the last 3 months of life. Multivariable analyses showed SPC to be equal in relation to sex and SES, and inversely associated with age (p ≤ 0.01), comorbidity (p = 0.001), and nursing home residency (p < 0.0001). Unplanned ER visits (OR 0.41) and hospitalizations (OR 0.45) during the last month of life were significantly less common among patients receiving SPC, in multivariable analysis (p < 0.001). In accordance, hospital deaths were infrequent in patients receiving SPC (2%) as compared to one in every four patients without SPC (p < 0.0001). Patients with less comorbidity had lower acute healthcare utilization in the last month of life (OR 0.35 to 0.65), whereas age or SES was not significantly associated with acute care utilization. Female sex was associated with a lower likelihood of EOL hospitalization (OR 0.72). Nursing home residency was independently associated with a decreased likelihood of EOL acute healthcare utilization including fewer hospital deaths (OR 0.08-0.54). CONCLUSIONS: Receipt of SPC or nursing home residency was associated with lower acute health care utilization among brain tumor patients. Patients with more severe comorbidities were less likely to receive SPC and required excess acute healthcare in end-of-life and therefore constitute a particularly vulnerable group.

Equal receipt of specialized palliative care in breast and prostate cancer: a register study.

PURPOSE: There are inequalities in cancer treatment. This study aimed to investigate whether receipt of specialized palliative care (SPC) is affected by typical female and male diagnoses (breast and prostate cancer), age, socioeconomic status (SES), comorbidities as measured by the Charlson Comorbidity Index (CCI), or living arrangements (home vs nursing home residence). Furthermore, we wanted to investigate if receipt of SPC affects the place of death, or correlated with emergency department visits, or hospital admissions. METHODS: All breast and prostate cancer patients who died with verified distant metastases during 2015-2019 in the Stockholm Region were included (n = 2516). We used univariable and stepwise (forward) logistic multiple regression models. RESULTS: Lower age, lower CCI score, and higher SES significantly predicted receipt of palliative care 3 months before death (p = .007-p < .0001). Patients with prostate cancer, a lower CCI score, receiving palliative care services, or living in a nursing home were admitted to a hospital or visited an emergency room less often during their last month of life (p = .01 to < .0001). Patients receiving palliative care services had a low likelihood of dying in an acute care hospital (p < .001). Those who died in a hospital were younger, had a lower CCI score, and had received less palliative care or nursing home services (p = .02- < .0001). CONCLUSION: Age, comorbidities, and nursing home residence affected the likelihood of receiving SPC. However, the diagnosis of breast versus prostate cancer did not. Emergency room visits, hospital admissions, and hospital deaths are registered less often for patients with SPC.

Palliative oncology and palliative care.

New therapeutic approaches can produce promising results even in severely ill cancer patients. But they also pose new challenges with respect to prognostication, as patients who were once not eligible for treatment, due to age or comorbidities, now are. Palliative oncology constitutes a major part of oncological care, with life prolongation and quality of life as its main goals. Palliative care specialists are experts in symptom control and psychosocial and existential support, and the integration of their expertise early on in patient care can prolong survival. In this article, I discuss the need to integrate specialist palliative care into early cancer treatment plans to achieve quality of life for patients. I also discuss the ways in which palliative care specialists balance the benefits of novel treatments against their adverse effects for patients, particularly for the elderly, the frail and those in advance stages of disease. I highlight the need to ensure equal access to palliative care to improve cancer patients' quality of life but also why futile, burdensome treatments should be avoided especially in the frail, elderly patients. Further, I discuss benefits and problems related to nutritional support in patients with cachexia and exemplify why translational research is needed to link basic research with clinical oncology and effective symptom control.

Advanced cancer and concomitant dementia: access to specialized palliative care, emergency room, hospital care, and place of death.

BACKGROUND: Dementia and advanced cancer are complex, life-limiting conditions that benefit from specialized palliative care (SPC) interventions at the end of life. The objective was to study possible differences in care for patients with concomitant advanced cancer and dementia (CA-DEM) or cancer only (CA) regarding access to SPC, acute hospital care, and place of death. MATERIALS AND METHODS: A retrospective observational registry study on health care consumption data from the Stockholm Regional Council involving logistic regression analyses of age, sex, living arrangements, comorbidities, dementia diagnosis, and socio-economic status. RESULTS: Of the 12,667 persons aged ≥65 years who died from advanced cancer between 2015 and 2019, 605 had concomitant dementia. Of these, 76% of patients with CA and 42% of patients with CA-DEM had access to SPC (p<.0001). There were more admissions to palliative care for persons not living in nursing homes (p<.0001), women (p<.0001), socioeconomically privileged patients (p<.05), those with fewer comorbidities (p<.0001), and younger patients (<85 years) (p<.0001). Access to SPC reduced ER visits, hospitalizations, and acute hospital deaths for CA, whereas access to SPC only reduced hospital deaths in the CA-DEM group. CONCLUSIONS: The probability of being admitted to SPC was lower in cancer patients with known dementia. Access to SPC reduced emergency room visits and acute admissions to hospitals for the whole group, and hospital deaths both for CA and CA-DEM.

Benefits, for patients with late stage chronic obstructive pulmonary disease, of being cared for in specialized palliative care compared to hospital. A nationwide register study.

BACKGROUND: In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. Still, specialist palliative care is seldom offered to patients with COPD; they more often receive end of life care in hospitals. Furthermore, symptoms, symptom relief and care activities in the last week of life for COPD patients are rarely studied. The aim of this study was to compare patient and care characteristics in late stage COPD patients treated in specialized palliative care (SPC) versus hospital. METHODS: Two nationwide registers were merged, the Swedish National Airway Register (SNAR) and the Swedish Register of Palliative Care (SRPC). Patients with COPD and < 50% of predicted forced expiratory volume in 1 s (FEV1), who had died in inpatient or outpatient SPC (n = 159) or in hospital (n = 439), were identified. Clinical COPD characteristics were extracted from the SNAR, and end of life (EOL) care characteristics from the SRPC. Descriptive statistics were used to describe the sample and the registered care and treatments. Independent samples t-test, Mantel-Haenszel chi-square test and Fisher's exact test was used to compare variables. To examine predictors of place of death, bivariate and multivariate logistic regression analyses were performed with a dependent variable with demographic and clinical variables used as independent variables. RESULTS: The patients in hospitals were older and more likely to have heart failure or hypertension. Pain was more frequently reported and relieved in SPC than in hospitals (p = 0.001). Rattle, anxiety, delirium and nausea were reported at similar frequencies between the settings; but rattle, anxiety, delirium, and dyspnea were more frequently relieved in SPC (all p < 0.001). Compared to hospital, SPC was more often the preferred place of care (p < 0.001). In SPC, EOL discussions with patients and families were more frequently held than in hospital (p < 0.001). Heart failure increased the probability of dying in hospital while lung cancer increased the probability of dying in SPC. CONCLUSION: This study provides evidence for referring more COPD patients to SPC, which is more focused on symptom management and psychosocial and existential support.

Symptoms, symptom relief and support in COVID-19 patients dying in hospitals during the first pandemic wave.

BACKGROUND: At the time of the first wave of the COVID-19 pandemic in Sweden, little was known about how effective our regular end-of-life care strategies would be for patients dying from COVID-19 in hospitals. The aim of the study was to describe and evaluate end-of-life care for patients dying from COVID-19 in hospitals in Sweden up until up until 12 November 2020. METHODS: Data were collected from the Swedish Register of Palliative Care. Hospital deaths during 2020 for patients with COVID-19 were included and compared to a reference cohort of hospital patients who died during 2019. Logistic regression was used to compare the groups and to control for impact of sex, age and a diagnosis of dementia. RESULTS: The COVID-19 group (1476 individuals) had a lower proportion of women and was older compared to the reference cohort (13,158 individuals), 81.8 versus 80.6 years (p < .001). Breathlessness was more commonly reported in the COVID-19 group compared to the reference cohort (72% vs 43%, p < .001). Furthermore, anxiety and delirium were more commonly and respiratory secretions, nausea and pain were less commonly reported during the last week in life in the COVID-19 group (p < .001 for all five symptoms). When present, complete relief of anxiety (p = .021), pain (p = .025) and respiratory secretions (p = .037) was more often achieved in the COVID-19 group. In the COVID-19 group, 57% had someone present at the time of death compared to 77% in the reference cohort (p < .001). CONCLUSIONS: The standard medical strategies for symptom relief and end-of-life care in hospitals seemed to be acceptable. Symptoms in COVID-19 deaths in hospitals were relieved as much as or even to a higher degree than in hospitals in 2019. Importantly, though, as a result of closing the hospitals to relatives and visitors, patients dying from COVID-19 more frequently died alone, and healthcare providers were not able to substitute for absent relatives.

Dying from cancer with COVID-19: age, sex, socio-economic status, and comorbidities.

BACKGROUND: The COVID-19 pandemic has caused excess deaths (all causes) and has disproportionately affected the elderly with certain characteristics. OBJECTIVES: To study how COVID-19 affected cancer deaths regarding age, sex, socio-economic status, comorbidities, and access to palliative care. An additional objective was to study changes in place of care and death. MATERIAL AND METHODS: A descriptive, retrospective study of all cancer patients who died during March-May 2020 in the Stockholm region, n = 1467 of which 278 died with a COVID-19 diagnosis, compared with deaths in 2016-2019. The Stockholm Regional Council's central data warehouse was used. T-tests, 95% CI, Wilcoxon and chi-squared tests were used for comparisons. RESULTS: There were excess cancer deaths compared with 2016-2019 (p < 0.001) and patients dying with a COVID-19 diagnosis were older (79.7 vs. 75.9 years, p < 0.0001), more often male (67% vs. 55%, p < 0.0001), and had more comorbidities (Charlson Comorbidity Index 1.6 vs. 1.1, p < 0.0001). Patients with COVID-19 more seldom had access to palliative care (34% vs. 59%, p = 0.008), had more changes in place of care during the last two weeks of life (p < 0.0001) and died more often in acute hospitals (34% vs. 14%, p < 0.0001). For the subgroup with access to palliative care, the hospital deaths for individuals with and without a COVID-19 diagnosis were 11% and 4%, respectively (p = 0.008). CONCLUSION: Cancer patients dying with a COVID-19 diagnosis were older, more often male, and had more comorbidities. A COVID-19 diagnosis negatively affected the probability of being admitted to specialized palliative care and increased the likelihood of dying in an acute hospital.

Chronic obstructive pulmonary disease and lung cancer: access to palliative care, emergency room visits and hospital deaths.

BACKGROUND: Despite the severe symptoms experienced by dying COPD patients, specialized palliative care (SPC) services focus mainly on cancer patients. We aimed to study the access to SPC that COPD and lung cancer (LC) patients receive and how that access affects the need for acute hospital care. METHODS: A descriptive regional registry study using data acquired through VAL, the Stockholm Regional Council's central data warehouse, which covers nearly all healthcare use in the county of Stockholm. All the patients who died of COPD or LC from 2015 to 2019 were included. T-tests, chi-2 tests, and univariable and multivariable logistic regression analyses were performed on the accumulated data. RESULTS: In total, 6479 patients, (2917 with COPD and 3562 with LC) were studied. The patients with LC had more access to SPC during the last three months of life than did those with COPD (77% vs. 18%, respectively; p < .0001), whereas patients with COPD were more likely to be residents of nursing homes than those with LC (32% vs. 9%, respectively; p < .0001). Higher socioeconomic status (SES) (p < .01) and patient age < 80 years (p < .001) were associated with increased access to SPC for LC patients. Access to SPC correlated with fewer emergency room visits (p < .0001 for both COPD and LC patients) and fewer admissions to acute hospitals during the last month of life (p < .0001 for both groups). More COPD patients died in acute hospitals than lung cancer patients, (39% vs. 20%; χ2 = 287, p < .0001), with significantly lower figures for those who had access to SPC (p < .0001). CONCLUSIONS: Compared to dying COPD patients, LC patients have more access to SPC. Access to SPC reduces the need for emergency room visits and admissions to acute hospitals.