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.

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.

Health care utilization at the end of life in Parkinson's disease: a population-based register study.

BACKGROUND: Knowledge of health care utilization at the end of life in Parkinson's disease (PD) is sparse. This study aims to investigate end of life health care utilization, characterized by emergency room (ER) visits, receipt of specialized palliative care (SPC), and acute hospital deaths in a Swedish population-based PD cohort. METHODS: We conducted a retrospective cohort study on deceased patients (≥ 18 years) with a PD diagnosis during their last year of life (n = 922), based on health care-provider data from Region Stockholm´s data warehouse, for the study period 2015-2021. Univariable and multivariable logistic regression analyses tested associations and adjusted Odds ratios (aORs) were calculated. RESULTS: During the last month of life, approx. half of the cohort had emergency room (ER) visits and risk of frailty (measured by Hospital Frailty Risk Score) significantly predicted these visits (aOR, 3.90 (2.75-5.55)). In total, 120 people (13%) received SPC during their last three months of life, which positively associated with risk for frailty, (aOR, 2.65 (1.43-4.94, p = 0.002). In total, 284 people (31%) died in acute hospital settings. Among community-dwellers, male gender and frailty were strongly associated with acute hospital deaths (aOR, 1.90 (1.15-3.13, p = 0.01) and 3.70 (1.96-6.98, p < 0.0001)). CONCLUSIONS: Rates of ER visits at end of life and hospital deaths were relatively high in this population-based cohort. Considering a high disease burden, referral to SPC at end of life was relatively low. Sex-specific disparities in health care utilization are apparent. Identifying people with high risk for frailty could assist the planning of optimal end-of-life care for people with PD.

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.

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.

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.

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.

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.

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.

Dying from COVID-19 in nursing homes-sex differences in symptom occurrence.

BACKGROUND: Coronavirus disease 2019 (COVID-19), is a disease with diverse presentation. Several studies have shown different occurrence of symptoms for women and men, but no studies have been found examining sex differences in clinical presentation for nursing home residents dying from COVID-19. The objective of this study was to describe sex and age differences and the impact of a dementia diagnosis on symptom occurrence during the last week in life for persons dying from COVID-19 in nursing homes. METHODS: This is a population-based retrospective study based on data from the Swedish Register of Palliative Care. A total of 1994 residents aged 65 or older who died from COVID-19 in nursing homes were identified. The impact of sex, age and a dementia diagnosis on six different symptoms was analysed using chi2-test and multivariate logistic regression. RESULTS: Residents dying from COVID-19 were more often men (p < .002). Men more often had dyspnoea and death rattles (p < .001). Nausea was more common in women (p < .001). No sex differences in the occurrence of pain, anxiety or confusion were seen. Dyspnoea and nausea were less commonly reported in residents with dementia (p < .001). CONCLUSIONS: We found sex differences in symptom presentation for fatal COVID-19 in nursing home settings which remained after adjusting for age. Residents with a dementia diagnosis had fewer symptoms reported before death compared to those without dementia. Clinical presentation of fatal COVID-19 differs between women and men in nursing homes. Residents with fatal COVID-19 present with more unspecific and less prominent symptoms when also suffering from dementia.

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.

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.

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.

Continuous subcutaneous infusion for pain control in dying patients: experiences from a tertiary palliative care center.

BACKGROUND: Continuous subcutaneous infusion (CSCI) via ambulatory infusion pump (AIP) is a valuable method of pain control in palliative care. When using CSCI, low-dose methadone as add-on to other opioids might be an option in complex pain situations. This study aimed to investigate the effects, and adverse effects, of CSCI for pain control in dying patients, with particular interest in methadone use. METHODS: This was an observational cohort study. Imminently dying patients with pain, admitted to specialized palliative inpatient wards and introduced on CSCI, were monitored daily by staff for symptoms (Integrated Palliative Care Outcome Scale - IPOS), sedation (Richmond Agitation and Sedation Scale - RASS), performance status (Eastern Cooperative Oncology Group - ECOG) and delirium (Confusion Assessment Method - CAM). RESULTS: Ninety-three patients with a median survival of 4 days were included. Of the 47 patients who survived ≥3 days, the proportion of patients with severe/overwhelming pain decreased from 45 to 19% (p < 0.001) after starting CSCI, with only a moderate increase in morphine equivalent daily dose of opioids (MEDD). Alertness was marginally decreased (1 point on the 10-point RASS scale, p = 0.001), whereas performance status and prevalence of delirium, regardless of age, remained unchanged. Both patients with methadone as add-on (MET, n = 13) and patients with only other opioids (NMET, n = 34), improved in pain control (p < 0.05 and 0.001, respectively), despite that MET patients had higher pain scores at baseline (p < 0.05) and were on a higher MEDD (240 mg vs.133 mg). No serious adverse effects demanding treatment stop were reported. CONCLUSIONS: CSCI via AIP is an effective way to reduce pain in dying patients without increased adverse effects. Add-on methadone may be beneficial in patients with severe complex pain.

High Degree of Satisfaction With the Support Given by Multidisciplinary Palliative Home Care Teams in the County of Stockholm.

OBJECTIVE: At the initiative of Stockholm County Council, a survey was performed by an independent investigator to evaluate satisfaction among patients and their families with the advanced palliative home care teams in the county of Stockholm. The survey was performed in 2010 and compiled in 2011. The aim was to evaluate the impressions of patients and their families of the support given by the palliative home care teams in the Stockholm area and to evaluate the management of symptom control, availability, continuity, confidence, and quality of communication. METHODS: A questionnaire was sent to 1424 patients and 329 family members to evaluate the views of the users of the home care service. RESULTS: The response rate was 78% among both patients and their families or other caregivers. The proportion of positive and very positive responses among those who needed the specific help of the team was as follows: information about the service 86%, availability around the clock 96%, influence and feeling of shared responsibility 88%, and possibility of family members to have supportive discussions 95%. Eighty-three percent of patients experienced total pain relief and 99% total or partial relief. The corresponding figures for anxiety were 77% and 97% and for other symptom reliefs 79% and 98%, respectively. These figures were comparable to a smaller survey in 2014 and were high compared to the results from other medical services using similar questionnaires. Significance of the Results: A high quality of care is possible to achieve within palliative home care services.

Supporting in an existential crisis: A mixed-methods evaluation of a training model in palliative care.

BACKGROUND: Palliative care staff often report that they lack the skills and confidence to provide support during an existential crisis. Consequently, there is a definite need for a training program in this area. OBJECTIVE: Our aim was to investigate whether a training model could give palliative care staff increased knowledge, awareness, and preparedness-all useful tools for providing support. METHODS: A mixed-methods research design was used. Data were collected in four hospital-based palliative homecare teams in the Stockholm area. In total, 34 staff participated, representing different palliative care team professions. Before and after the intervention, a questionnaire with a 9-point Likert-type scale was completed (n = 34). Qualitative focus group discussions were conducted a month after the intervention (25 participants). These were recorded, transcribed, and analyzed using qualitative content analysis with a manifest focus. RESULTS: In the quantitative part of our study, the participants showed significantly increased perceived knowledge, awareness, and preparedness in every aspect (p < 0.001 for all items). The focus group discussions revealed a process that made it possible to apply new knowledge and insight. The process began with theoretical knowledge and, through care-related reflection and self-reflection, the knowledge base gradually developed and provided useful skills and increased job satisfaction. SIGNIFICANCE OF RESULTS: The team-based "TrainingModel Sand/TER" can be performed without excessive effort and contribute to improved competence in providing support during an existential crisis. It is particularly useful for staff working in clinical palliative care.

Does palliative chemotherapy provide a palliative effect on symptoms in late palliative stages? An interview study with oncologists.

BACKGROUND: The possible chemotherapy effects on symptoms in late stages of palliative chemotherapy are seldom registered in clinical practice or investigated as primary outcomes. The aim was therefore to study physicians' opinions and experiences about chemotherapy effects on symptoms. MATERIAL AND METHODS: Thirty-five physicians (mainly oncologists) with variation as regards age, gender and experience were included in a qualitative study with semi-structured interviews. A qualitative content analysis was used for the 30-60 min long interviews. RESULTS: According to all the informants, symptoms were possible to control in successful cases but the chances reduce rapidly with the number of chemotherapy lines. Symptoms possible to control included various types of pain (bone pain, neuropathic cranial as well as meningeal nerve pain, colic pain, "liver" pain, headache and pain from cutaneous metastases); nausea and vomiting caused by obstruction; dyspnoea due to pleural effusions or bronchial obstructions. Also fatigue and B-symptoms were possible targets, as were diagnosis-specific symptom clusters (e.g., liver metastasis causing pain, nausea, tumour fever and night sweats; or head-neck cancers resulting in nerve pain, ulcerations, odour, dysphagia and impaired breathing). Some of the oncologists discussed whether the effects were related to chemotherapy treatment only or partly to premedication with steroids. Despite the claimed effects, the physicians did not keep record on symptoms, they did not evaluate them with validated instruments. CONCLUSIONS: Palliative chemotherapy has a substantial potential to reduce agonizing symptoms especially in first line treatments, but the effect is limited in late stages. The actual awareness of and knowledge about situations where the treatment has a reasonable potential, should be improved and symptoms should be monitored during treatment.

The will to live - breast cancer patients perceptions' of palliative chemotherapy.

BACKGROUND: For women with metastatic breast cancer, late lines of chemotherapy might be beneficial but also harmful. Ongoing chemotherapy late in life increase the risk of late or absent discussions of palliative care and access to symptom relief by other options than chemotherapy. Our aim was, therefore, to investigate breast cancer patients' motives, perceptions, and experiences of late lines of palliative oncologic treatment. MATERIAL AND METHODS: A qualitative study with semi-guided face-to-face interviews with 20 women on at least their second line of palliative chemotherapy (second-eighth line). All women had breast cancer and were 40-80 years old. The interviews were analyzed by a phenomenographical approach according to seven steps, which uses a second-order perspective, i.e., how the informants experience the world. RESULTS: The categories that surrounded the decision to continue with palliative chemotherapy were: The decision, Personal motives and goals and The treatment. All women acknowledged that they knew they had incurable breast cancer and that the treatment goal was to slow down cancer growth. Fear of death was a strong motive for all women in addition to experience of new values of life, still they preferred the doctor to make the decision. Cancer symptoms, especially pain triggered death anxiety, whereas the patients patiently accepted similar side effects from the treatment. There were also external motives for treatment like wishes from family, friends, but also health care staff. CONCLUSIONS: All women knew they had disseminated breast cancer, still they expressed hopes for cure, therefore, death was more of a threat than a reality of an imminent death. None of the women had perceived there was an option to stop treatment. They felt both their families and doctors expected them to continue. Death threat was their main motive for accepting treatment.

Determinants of long-term quality of life in patients with differentiated thyroid carcinoma - a population-based cohort study in Sweden.

BACKGROUND: Although differentiated thyroid cancer (DTC) has an excellent prognosis and a low incidence of recurrence, lifelong follow-up and medication might be needed. The aim of this study was to clarify how living with a cancer diagnosis for many years affects health-related quality of life (HRQoL) in DTC patients in Sweden. MATERIAL AND METHODS: From the national all-encompassing population-based Swedish Cancer Registry, 353 patients diagnosed with DTC between 1995 and 1998 were identified and invited to answer the HRQoL questionnaire SF-36 and a study-specific questionnaire, 14-17 years after their diagnosis. Data were compared with a reference population as well between subgroups of patients. RESULTS: Of the patients with DTC, 279 (79%) answered the questionnaires. In all, only 19 (7%) reported a recurrence, however, as many as 134 (48%) stated that they still had concerns about having a recurrence. The HRQoL in those with a recurrence was significantly lower than those without concerns of a recurrence in five of eight domains (p < 0.001-0.049). Similarly, patients with concerns of a recurrence reported poorer HRQoL than those without concerns, with significantly lower values in five domains (p < 0.001-0.008). Those few who stated that their disease had given them a negative view on life reported poor HRQoL in all eight domains (p < 0.001-0.030). CONCLUSIONS: Even if DTC comes with an excellent prognosis, almost half of the patients, fully 15 years after diagnosis, worried about a recurrence which negatively impacted their HRQoL. Awareness among healthcare practitioners might improve information, supportive care and, in the end, the patient's HRQoL.

Experience of guilt and strategies for coping with guilt in patients with severe COPD: a qualitative interview study.

Guilt is associated with an increased level of mood disturbance and a poorer quality of life. The aim of this study was to explore how patients with severe COPD view and experience guilt and the ways in which they cope with this guilt. A total of 31 COPD patients were interviewed about their perceptions and experiences of guilt. Qualitative content analysis was used to examine the interviews. In the descriptive (manifest) analysis, the categories "not feeling personal guilt" and "experiencing guilt" emerged; in the interpretative (latent) analysis, various strategies for dealing with guilt were identified--for example, acceptance or blaming others. Relatively few patients reported that they felt guilt on a conscious level, but those who did expressed anguish, and remorse before God; some felt blamed by others. It is important that healthcare providers acknowledge the guilt that their patients express, since guilt may have adverse effects on the patients' overall health.