Context. Preparation 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. Objectives. The 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. Methods. The 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). Results. A total of 1346 expected COVID-19 deaths in nursing homes (n ¼ 908) and hospitals (n ¼ 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). Conclusion. Dying 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. J Pain Symptom Manage 2020;60:e2ee13.

IntroductionGlobally, dementia is one of the leading causes of death. Given the growing elderly population in the world, the yearly number of deaths by dementia is expected to increase. Patients dying from dementia are reported to suffer from a burden of symptoms similar to that of patients with cancer, but receive less medication against symptoms, have a lower probability of palliative care planning and seldom have access to specialised palliative care. Studies investigating the quality of palliative care in dementia are scarce. The aim of this Swedish national study was to compare the quality of end-of-life care between patients with dementia and patients with cancer regardless of place of care.MethodsThirteen end-of-life care quality indicators collected by the Swedish Register of Palliative Care (SRPC) were compared between patients dying from dementia and patients dying from cancer. Data were collected from deaths occurring in nursing homes, hospitals, specialised and general palliative home care, and palliative in-patient units during a three-year period (during March 2012 to February 2015). Analyses were performed using a multivariable logistic regression model, adjusted for age and gender. A subgroup of patients with Alzheimer’s disease was identified and compared to patients with other and unspecified types of dementia.ResultsA total of 4624 deaths from Alzheimer’s disease, 11 804deaths from other dementia diagnoses and 51 609 deaths from cancer were included. For six of the 13 quality indicators examined (prescription of PRN drugs against nausea and anxiety, information and bereavement support offered to next of kin, pain assessment and specialised palliative care consultations), poorer outcomes were shown for the dementia group in comparison to the cancer group. Two outcomes (prevalence of pressure ulcers and fluid therapy during the last 24 hours in life) showed better outcomes for the dementia group. The outcomes for the 13 quality indicators were similar for patients with Alzheimer’s disease compared to patients with other and unspecified types of dementia.ConclusionsThe findings in this study indicates that patients dying from Alzheimer’s disease and other types of dementia receive a poorer quality of end-of-life care concerning several important end-of-life care areas when compared to patients dying from cancer. Guidelines for end-of-life care in Sweden cannot explain or justify these differences. Further studies are needed to find possible ways to improve end-of-life care in the large and growing group of patients dying from dementia.

IntroductionThe Swedish Register of Palliative Care (SRPC) is a national quality register that collects data about end-of-life care from healthcare providers that care for dying patients. Data are used for quality control and research. Data are mainly collected with an end-of-life questionnaire (ELQ), which is completed by healthcare staff after the death of a patient. A previous validity assessment of the ELQ showed insufficient validity in some items including symptom relief. The aim of this study was to examine the validity of the revised ELQ.Materials and methodsData from 100 consecutive patients’ medical records at two specialised palliative care units were used to complete new ELQs, which were then compared to the ELQ registrations from the SRPC for the same patients. The level of agreement was calculated for each ELQ item. To account for the possibility of the agreement occurring by chance, Cohen’s kappa was calculated for suitable items. To examine the extent of registration mistakes when transferring the paper form to the web, the original paper versions of the ELQ filled out at the units were compared to data from the ELQs reported to the SRPC.ResultsLevel of agreement between ELQ registrations from the SRPC and the new ELQs based on the medical records varied between 0.55 and 1.00, where 24 items showed level of agreement above 0.80 and 9 items showed level of agreement below 0.80. Cohen’s kappa with 95% confidence intervals was calculated for 24 items. The kappa values showed that two items had poor agreement, four fair agreement, 11 moderate agreement, five good agreement and two very good agreement. The level of agreement varied between 0.93 and 1.00 when comparing the ELQ registrations in the SRPC and the paper forms.ConclusionThe revised ELQ contains more items with high levels of agreement between registrations in the SRPC and notes in the patients’ medical records when compared to the previous version. Validating issues around symptom assessment remains a challenge in our model of quality assessment.

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ObjectivesStructured methods to assess and support improvement in the quality of end-of-life care are lacking and need to be developed. This need is particularly high outside the specialised palliative care. This study examines whether participation in a national quality register increased the quality of end-of-life care.DesignThis study is a cross-sectional longitudinal register study.SettingThe Swedish Register of Palliative Care (SRPC) collects data about end-of-life care for deaths in all types of healthcare units all over Sweden. Data from all 503 healthcare units that had reported patients continuously to the register during a 3-year period were analysed.Primary and secondary outcome measuresData on provided care during the last weeks of life were compared year-by-year with logistic regression.ParticipantsThe study included a total 30 283 patients. The gender distribution was 54% women and 46% men. A total of 60% of patients in the study had a cancer diagnosis.ResultsProvided end-of-life care improved in a number of ways. The prevalence of six examined symptoms decreased. The prescription of ‘as needed’ medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient's next of kin was more often offered a follow-up appointment after the patient's death. No changes were seen with respect to providing information to the patient or next of kin.ConclusionsParticipation in a national quality register covariates with quality improvements in end-of-life care over time.