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.

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.

Symptom assessment in the dying: family members versus healthcare professionals.

Objectives: Symptom 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 little knowledge in the literature of how healthcare professionals (HCPs) assess symptoms compared with FMs.

The Abbey Pain Scale: not sufficiently valid or reliable for assessing pain in patients with advanced cancer.

Background: Patients with advanced cancer can be unable to verbalize their pain. The Abbey Pain Scale (APS), an observational tool, is used to assess pain in this setting, but has never been psychometrically tested for people with cancer. The aim of this study was to assess the validity, reliability, and the responsiveness of the APS to opioids for patients with advanced cancer in a palliative oncology care setting.

Physicians' and nurses' experience of using the Abbey Pain Scale (APS) in people with advanced cancer: a qualitative content analysis.

Background: The Abbey Pain Scale (APS), an observational scale used to assess pain in people with end-stage dementia, is also widely used in Sweden to assess pain in patients with advanced cancer. It is unclear whether the APS is appropriate in this context. This study aims to explore physicians' and nurses' experiences of using a Swedish translation of the APS (the APS-SE) in people with advanced cancer.

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 ( = 430) and within SPC ( = 384) were identified from the Swedish Register of Palliative Care.

Translation, cultural adaptation and recommendations for clinical implementation of the Abbey Pain Scale to a Swedish dementia care context.

Aim: To translate and culturally adapt the APS for people with end-stage dementia in various care settings in Sweden and to investigate factors important for clinical implementation.

Design: Qualitative study design with interviews with care staff.

Methods: After an initial discussion of concepts, the Abbey Pain Scale was translated into Swedish and back into English to check for accuracy.

Translation and cultural adaptation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) to Swedish.

Introduction: Systematic assessment tools are helpful for improving and maintaining quality of care. The Integrated Palliative care Outcome Scale (IPOS) was developed for systematic assessment of persons receiving palliative care in a patient-centred way. A version of this tool, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), has been developed for patients with dementia.

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.

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

Background: In 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. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.

Objective: The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.

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.

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

To compare symptom prevalence and relief in residents who died in nursing homes with residents who were acutely referred to hospitals. Data on symptoms during the last week of life from the Swedish Register of Palliative Care (SRPC). Nursing homes ( = 1903 deaths) and hospitals in Sweden ( = 202 nursing home residents who were admitted to hospital before death).

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.

Context: Although 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.

Objectives: The 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.

Methods: Data 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.

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

Background: Hospitalisation 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.

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.

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.

Quality of end-of-life care in patients with dementia compared to patients with cancer: A population-based register study.

Introduction: Globally, 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.

Improved data validity in the Swedish Register of Palliative Care.

Introduction: The 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.

Patients' perspectives on information from physicians during palliative chemotherapy: A qualitative study.

Objective: During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning.

Method: A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis.

Registration in a quality register: a method to improve end-of-life care--a cross-sectional study.

Objectives: Structured 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.

Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care.

Unlabelled: Quality in health care is important to measure and palliative care is no exception. The Swedish Register of Palliative Care (SRPC) is a national quality register that focuses on the last week of life. It collects data with an end-of-life questionnaire (ELQ), which is validated in this study.