Swedish Register Of Palliative Care Research Articles

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

BackgroundDespite 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.MethodsThe 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.ResultsA 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.ConclusionsThe 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 registrationNo trial registration was made as all patients were deceased and all data were retrieved from The Swedish Register of Palliative Care database.

Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study.

The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home. This study had a qualitative descriptive design based on the data from open-ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis. The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support. It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home.

Symptom assessment in the dying: family members versus healthcare professionals

ObjectivesSymptom management and support of the family members (FMs) are considered essential aspects of palliative care. During end of life, patients are often not able to self-report symptoms. There is...

Support given by health professionals before and after a patient's death to relatives involved in general palliative care at home in Sweden: Findings from the Swedish Register of Palliative Care.

General palliative care (PC) is provided more at home, leading to increased involvement of relatives. Although support for relatives is a fundamental component of PC, there are deficiencies in the support provided to relatives when general PC is provided at home. This study aimed to describe the support provided by health professionals before and after a patient's death to relatives involved in general PC at home. A cross-sectional register study was implemented, with data from the Swedish Register of Palliative care. The sample consisted of 160 completed surveys from relatives who had been involved in general PC at home, with 160 related surveys answered by health professionals. Only the questions about support to relatives were used from the surveys. The findings showed that although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient's death. The findings also indicated differences in whether relatives received some support before and after a patient's death depending on the type of relative. There were also differences in responses between health professionals and relatives regarding if relatives received counseling from a doctor about whether the patient was dying. There is potential for improvements regarding support for relatives, especially after a patient's death, which has been confirmed in previous studies. The differences in whether relatives received support before and after a patient's death depending on the type of relative highlight the need for future research on how to support different types of relatives before and after a patient's death when general PC is provided at home.

Deactivation of implantable defibrillators at the end of life - A register-based study of ICD-deactivation at home and the impact of palliative care

BackgroundThe Implantable Cardioverter-Defibrillator (ICD) is a well-established life-saving therapy for heart failure patients, but due to the risk for unnecessary shocks, deactivation of ICD:s is recommended at the end of life.We aimed to identify i) how many people with HF and an ICD who died in Sweden in 2018 received Specialized Palliative Care (SPC), ii) of those dying outside of hospital, the proportion with deactivated ICDs prior to death for the group as a whole and by SPC access. Methods and resultsWe analyzed data from i) the Swedish ICD and Pacemaker Registry to find all who died with an ICD in Sweden in 2018, ii) the Swedish Register of Palliative Care and, iii) the Swedish Causes of Death Certificate Register to find those who died outside of hospital. Clinical records were obtained to assess if ICDs were deactivated before death. Descriptive statistics, t-tests and chi-squared tests were applied.46/406 (11%) of those who died with an ICD in Sweden in 2018 had SPC access, of whom 50% also had cancer. 86/164 (52%) ICDs were deactivated prior to death in people dying outside of hospital; higher in those accessing SPC (36/46, (78%) SPC access versus 151/360, (42%) no SPC access; p < 0.05). ConclusionsHalf of those with HF and an ICD dying outside of hospital had ICD deactivation prior to death. Those accessing SPC were more likely to have their ICD deactivated but few received SPC, without a comorbid cancer diagnosis.

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

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. 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. 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). More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.

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

BackgroundIn 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.MethodsTwo 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.ResultsThe 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.ConclusionThis 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

BackgroundAt 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.MethodsData 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.ResultsThe 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).ConclusionsThe 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.

End-of-life discussions in residential care homes improves symptom control: a national register study

BackgroundIn Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group....

A third of dying patients do not have end-of-life discussions with a physician: A nationwide registry study.

The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors. A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors. About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin. The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

Equal palliative care for foreign-born patients: A national quality register study.

To use data from a national quality register to investigate if there are differences relating to migrant background in the quality of end-of-life care of patients dying in Sweden. A retrospective, comparative register-based study. In total, 81,418 deceased patients, over 18 years of age, registered in the Swedish Register of Palliative Care during 2017 and 2018, of expected death were included in the study. Of these, 72,012 were Swedish-born and 9,395 were foreign-born. Descriptive and analytical statistical methods were used. No general pattern of differences in quality regarding end-of-life care was found between Swedish- and foreign-born patients. There were several significant differences in various quality indicators but not in a specific direction. Sometimes, the quality indicators showed an advantage for Swedish-born patients but just as often, they were also favorable for foreign-born patients. Swedish-born patients had greater access to specialized palliative care than foreign-born patients. Foreign-born patients were more often cared for in general home care setting, despite a higher frequency of cancer diagnosis. Foreign-born patients were less likely to be cared for in specialized palliative care units and had poorer access to palliative care teams than Swedish-born patients, despite having a higher proportion of cancer diagnoses. However, no general pattern was found indicating that foreign-born patients were disadvantaged in the quality indicators measured in the present study. Perhaps, this is an indication that the palliative care in Sweden is individualized; nonetheless, the quality of end-of-life care would be higher if dying patients, regardless of country of birth, have better access to specialized palliative care.

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

BackgroundCoronavirus 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.MethodsThis 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.ResultsResidents 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).ConclusionsWe 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.

Palliative key aspects are of importance for symptom relief during the last week of life in patients with heart failure.

AimsThis study aimed to describe symptom prevalence of pain, shortness of breath, anxiety, and nausea and to identify factors associated with symptom relief in patients with heart failure during their last week of life.Methods and resultsThis nationwide study used data from the Swedish Register of Palliative Care and the Swedish Causes of Death Certificate Register. The sample included 4215 patients with heart failure as the underlying cause of death. Descriptive statistics and logistic regression were used to analyse data. Pain was the most prevalent symptom (64.0%), followed by anxiety (45.1%), shortness of breath (28.8%), and nausea (11.4%). Pain was the most often totally relieved (77.5%), followed by anxiety (68.4%), nausea (54.7%), and shortness of breath (37.1%). Key aspects of palliative care such as documented palliative care in the patient record, individual medication prescriptions by injection, symptom assessment with validated scales, documented end‐of‐life discussions with patients and/or family members, and external consultation were significantly associated with symptom relief. Relief of pain, shortness of breath, anxiety, and nausea were significantly better managed in nursing homes and hospice/inpatient palliative care compared with care in hospitals.ConclusionsThe results show that key aspects of palliative care during the last week of life are significantly associated with symptom relief. Increased access to palliative care could provide a way to improve care during the last week of life for patients with heart failure. Home‐based settings provided more symptom relief than hospitals, which may indicate that the latter focuses on treatments and saving lives rather than promoting life before death.

Socioeconomy as a prognostic factor for location of death in Swedish palliative cancer patients

BackgroundAn important aspect of end-of-life care is the place of death. A majority of cancer patients prefer home death to hospital death. At the same time, the actual location of death is often against patient’s last-known wish. The aim of this study was to analyze whether socioeconomic factors influence if Swedish palliative cancer patients die at home or at a hospital. There is no previous study on location of death encompassing several years in Swedish cancer patients.MethodsData was collected from the Swedish Register of Palliative Care for patients diagnosed with brain tumor, lung, colorectal, prostate or breast cancer recorded between 2011 and 2014. The data was linked to the Swedish Cancer Register, the Cause of Death Register and the Longitudinal Integration Database for health-insurance and labor-market studies. A total of 8990 patients were included.ResultsWe found that marital status was the factor that seemed to affect the place of death. Lack of a partner, compared to being married, was associated with a higher likelihood of dying at a hospital.ConclusionOur findings are in line with similar earlier studies encompassing only 1 year and based on patients in other countries. Whether inequalities at least partly explain the differences remains to be investigated. Patients dying of cancer in Sweden, who do not have a life partner, may not have the option of dying at home due to lack of informal support. Perhaps the need of extensive community support services to enable home death have to improve, and further studies are warranted to answer this question.

COVID-19: Symptoms in Dying Residents of Nursing Homes and in Those Admitted to Hospitals

Objective: To compare symptom prevalence and relief in residents who died in nursing homes with residents who were acutely referred to hospitals. Design: Data on symptoms during the last week of life from the Swedish Register of Palliative Care (SRPC). Setting and Subjects: Nursing homes (n = 1903 deaths) and hospitals in Sweden (n = 202 nursing home residents who were admitted to hospital before death). Data were retrieved on August 24, 2020. Results: Residents who died in hospitals had more breakthrough symptoms of breathlessness (60% vs. 31%, p < 0.0001) and delirium (41% vs. 25%, p < 0.0001) than those who died in nursing homes. When symptoms were present, complete symptom relief was seen less often in hospitals compared with nursing homes (breathlessness, 28% vs. 47%, p < 0.001; delirium, 10% vs. 35%, p < 0.0001; respiratory secretions, 30% vs. 55%, p < 0.0001). Conclusion: Despite access to oxygen and pharmacologic/nonpharmacologic therapies in hospitals, symptom relief in dying nursing home residents acutely admitted to hospitals was lower compared with those who died in nursing homes, possibly because of differences in patient characteristics.

Were Clinical Routines for Good End-of-Life Care Maintained in Hospitals and Nursing Homes During the First Three Months of the Outbreak of COVID-19? A National Register Study

ContextAlthough the coronavirus disease 2019 (COVID-19) pandemic might affect important clinical routines, few studies have focused on the maintenance of good quality in end-of-life care. ObjectivesThe objective was to examine whether adherence to clinical routines for good end-of-life care differed for deaths because of COVID-19 compared with a reference cohort from 2019 and whether they differed between nursing homes and hospitals. MethodsData about five items reflecting clinical routines for persons who died an expected death from COVID-19 during the first three months of the pandemic (March–May 2020) were collected from the Swedish Register of Palliative Care. The items were compared between the COVID-19 group and the reference cohort and between the nursing home and hospital COVID-19 deaths. ResultsAbout 1316 expected deaths were identified in nursing homes and 685 in hospitals. Four of the five items differed for total COVID-19 group compared with the reference cohort: fewer were examined by a physician during the last days before death, pain and oral health were less likely to be assessed, and fewer had a specialized palliative care team consultation (P < 0.0001, respectively). Assessment of symptoms other than pain did not differ significantly. The five items differed between the nursing homes and hospitals in the COVID-19 group, most notably regarding the proportion of persons examined by a physician during the last days (nursing homes: 18%; hospitals: 100%). ConclusionThis national register study shows that several clinical routines for end-of-life care did not meet the usual standards during the first three months of the COVID-19 pandemic in Sweden. Higher preparedness for and monitoring of end-of-life care quality should be integrated into future pandemic plans.

Better quality of end-of-life care for persons with advanced dementia in nursing homes compared to hospitals: a Swedish national register study

BackgroundHospitalisation of patients with advanced dementia is generally regarded as less preferable compared to care at home or in a nursing home. For patients with other diagnoses, young age has been associated with better end-of-life care. However, studies comparing the quality of palliative care for persons with advanced dementia in hospitals and nursing homes are scarce. The aim of this study was to investigate whether quality of end-of-life care for patients with dementia depends on age, gender and place of death.MethodsThe Swedish Register of Palliative Care (SRPC) was used to identify patients who died from dementia in hospitals or nursing homes during a three-year period. The likelihood of death occurring at a hospital, based on age and gender differences, was calculated. Associations between 13 end-of-life care quality indicators collected from the SRPC and age, gender and place of care were examined in a logistic regression model.ResultsDeath at a hospital was associated with poorer quality of end-of-life care for 10 of the 13 measured outcomes when compared to death at a nursing home, and with better quality according to two of the outcomes. Death at a hospital was more common for men compared to women and for younger patients compared to older. Receiving fluids intravenously or via enteral tube in the last 24 h of life was strongly associated with death at a hospital. Women were more likely to have their oral health assessed and less likely to have pressure ulcers at death. Eight of 12 end-of-life care outcomes showed better results for the age group 65 to 84 years compared to those 85 years or older.ConclusionsDeath in hospitals was associated with poorer quality of end-of-life care compared to death in nursing homes. Our data support the importance of advance care planning and individual assessments in nursing homes to avoid referral to hospitals during end of life. Despite established recommendations to avoid hospitalisation if possible, there were strong associations between younger age, male gender and hospitalisation in the end of life. Further studies are needed to investigate the role of socioeconomic factors in end-of-life care for this patient group.

Symptom Relief Is Possible in Elderly Dying COVID-19 Patients: A National Register Study.

Background: Increasing numbers of people dying from COVID-19 are reported, but data are lacking on the way they die. Objective: To study symptoms and symptom relief during the last week of life, comparing nursing homes with hospitals. Design: The Swedish Register of Palliative Care with national coverage was used. Breakthrough symptoms were registered as Yes/No. Symptom relief was recorded on a 3-grade scale as complete-partial-no relief. All deaths in COVID-19 were contrasted to deaths in a reference population (deaths 2019). Deaths at nursing homes were compared with deaths in hospitals. Setting and Subjects: All deaths in hospitals or nursing homes (n = 490) were analyzed. Deaths in other settings (specialized palliative care wards [n = 11], in palliative home care [n = 2], or in their own homes [n = 8]) were excluded (n = 21). Only patients with expected deaths (n = 390) were entered in the final analysis. Results: Breathlessness as a breakthrough symptom was more common in COVID-19 patients than in the 2019 reference population (p < 0.001) and relief of breathlessness, as well as anxiety, delirium, and death rattles was less successful in COVID-19 patients (p < 0.05 to p < 0.01 in different comparisons). Patients were older in nursing homes than in hospitals (86.6 years vs. 80.9 years, p < 0.001) and more often female (48% vs. 34%, p < 0.001). Breakthrough of breathlessness was much more frequently reported in hospital settings than in nursing homes, 73% versus 35% (p < 0.0001), and complete relief was more rarely possible in hospitals, 20% versus 42% (p < 0.01). The proportion of partial relief+complete relief was comparable, 92% versus 95% (ns). Also, anxiety and pain were more often completely relieved in nursing homes (p < 0.01 in both comparisons). Conclusion: The lower symptom prevalence in nursing homes may be explained by elderly frail residents dying already in the first phase of the COVID-19 disease, before acute respiratory distress syndrome develops.

Dying From COVID-19: Loneliness, End-of-Life Discussions, and Support for Patients and Their Families in Nursing Homes and Hospitals. A National Register Study

ContextPreparation for an impending death through end-of-life (EOL) discussions and human presence when a person is dying is important for both patients and families. ObjectivesThe aim was to study whether EOL discussions were offered and to what degree patients were alone at time of death when dying from coronavirus disease 2019 (COVID-19), comparing deaths in nursing homes and hospitals. MethodsThe national Swedish Register of Palliative Care was used. All expected deaths from COVID-19 in nursing homes and hospitals were compared with, and contrasted to, deaths in a reference population (deaths in 2019). ResultsA total of 1346 expected COVID-19 deaths in nursing homes (n = 908) and hospitals (n = 438) were analyzed. Those who died were of a more advanced age in nursing homes (mean 86.4 years) and of a lower age in hospitals (mean 80.7 years) (P < 0.0001). Fewer EOL discussions with patients were held compared with deaths in 2019 (74% vs. 79%, P < 0.001), and dying with someone present was much more uncommon (59% vs. 83%, P < 0.0001). In comparisons between nursing homes and hospital deaths, more patients dying in nursing homes were women (56% vs. 37%, P < 0.0001), and significantly fewer had a retained ability to express their will during the last week of life (54% vs. 89%, P < 0.0001). Relatives were present at time of death in only 13% and 24% of the cases in nursing homes and hospitals, respectively (P < 0.001). The corresponding figures for staff were 52% and 38% (P < 0.0001). ConclusionDying from COVID-19 negatively affects the possibility of holding an EOL discussion and the chances of dying with someone present. This has considerable social and existential consequences for both patients and families.

The impact of initial treatment strategy and survival time on quality of end-of-life care among patients with oesophageal and gastric cancer: A population-based cohort study.

Oesophageal and gastric cancer are highly lethal malignancies with a 5-year survival rate of 15-29%. More knowledge is needed about the quality of end-of-life care in order to understand the burden of the illness and the ability of the current health care system to deliver timely and appropriate end-of-life care. The aim of this study was to describe the impact of initial treatment strategy and survival time on the quality of end-of-life care among patients with oesophageal and gastric cancer. This register-based cohort study included patients who died from oesophageal and gastric cancer in Sweden during 2014-2016. Through linking data from the National Register for Esophageal and Gastric Cancer, the National Cause of Death Register, and the Swedish Register of Palliative Care, 2156 individuals were included. Associations between initial treatment strategy and survival time and end-of-life care quality indicators were investigated. Adjusted risk ratios (RRs) with 95% confidence intervals were calculated using modified Poisson regression. Patients with a survival of ≤3 months and 4-7 months had higher RRs for hospital death compared to patients with a survival ≥17 months. Patients with a survival of ≤3 months also had a lower RR for end-of-life information and bereavement support compared to patients with a survival ≥17 months, while the risks of pain assessment and oral assessment were not associated with survival time. Compared to patients with curative treatment, patients with no tumour-directed treatment had a lower RR for pain assessment. No significant differences were shown between the treatment groups regarding hospital death, end-of-life information, oral health assessment, and bereavement support. Short survival time is associated with several indicators of low quality end-of-life care among patients with oesophageal and gastric cancer, suggesting that a proactive palliative care approach is imperative to ensure quality end-of-life care.