Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives.

Background: Large, international cohort studies generate high-level evidence, but are resource intense. In end-of-life care such studies are scarce. Hence, planning for future studies in terms of data on screening, recruitment, retention and survival remains a challenge.

Attitudes Toward Medical Assistance in Dying Among Swedish Palliative Care Professionals.

The debate over legalizing medical assistance in dying (assisted dying) is ongoing, also in Nordic countries such as Sweden where assisted dying is illegal. A 2020 survey by the Swedish Medical Association highlighted varied perspectives, with 41% of physicians supporting and 34% opposing legalization. Professionals in palliative care were more negative toward it.

Palliative care in policy documents for adults with cancer and non-cancer diseases with potential palliative care needs: a document analysis.

Background: The inclusion of palliative care in policy has been encouraged internationally, and gradually implemented, including in Sweden. Care should be driven by policy; hence, examining how palliative care is included in national policy documents is paramount.

Objectives: This study aimed to examine how palliative care is included in national disease-specific policy documents for adults with chronic conditions, cancer and non-cancer, with potential palliative care needs.

A core outcome set for best care for the dying person: Results of an international Delphi study and consensus meeting.

Background: Outcome measurement is essential to progress clinical practice and improve patient care.

Aim: To develop a Core Outcome Set for best care for the dying person.

Design: We followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature review (n = 619 papers) and from participants in the "iLIVE" project (10 countries: 101 patients, 37 family members, 63 clinicians), followed by a two-round Delphi study, and a consensus meeting.

Registry study of cardiovascular death in Sweden 2013-2019: Home as place of death and specialized palliative care are the preserve of a minority.

Background: Palliative care needs in patients with cardiovascular diseases (CVD) are expected to increase. For the planning of equitable palliative care, it is important to understand where people with CVD die. The aim was to examine trends in place of death, associated factors including utilization of specialized palliative services, and to what extent longitudinal development is influenced by national policy.

Death rituals and quality of life of bereaved relatives during the COVID-19 pandemic: Results of the observational CO-LIVE study.

Grief is a normal reaction after the death of a loved one. Death rituals are an integral part of the mourning processes. Not being able to carry out death rituals can affect relatives' quality of life.

Recommendations for Deprescribing of Medication in the Last Phase of Life: An International Delphi Study.

Context: Medications may become inappropriate for patients in the last phase of life and may even compromise their quality of life.

Objective: To find consensus on recommendations regarding deprescribing of medications for adult patients with a life expectancy of six months or less.

Methods: Experts working in palliative care or other relevant disciplines were asked to participate in this international Delphi study.

Trends in the place of death in Sweden from 2013 to 2019 - disclosing prerequisites for palliative care.

Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system.

Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization.

Methods: This population-level comprehensive register study included all deceased individuals ⩾18 years old with a registered place of death ( = 599,137).

The influence of "bad news" and "neutral/good news" on patients' perception of physician empathy during oncology consultations.

Objectives: Being met with empathy increases information sharing, treatment coherence, and helps patients to recover faster. However, we do not know how the content of the conversation about disease progression, new treatments, or other issues concerning serious illness affects patients' perceptions of the physician's empathy, and thus, the quality of the conversation. This study aimed to test the hypothesis that patients will rate their physician lower following a "bad news" consultation using the consultation and relational empathy (CARE) measure.

Associations between the spread of COVID-19 and end-of-life circumstances in the non-infected population of Sweden.

Aims: Since its outbreak in 2020, the COVID-19 pandemic has directly caused the premature death of millions. However, indirect consequences, such as social restrictions, have affected a far greater number. We explored the association between the spread of COVID-19 and end-of-life circumstances in the infected and non-infected population in Sweden.

Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study.

Background: Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described.

Objectives: The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group.

Family cohesion predicts long-term health and well-being after losing a parent to cancer as a teenager: A nationwide population-based study.

Background: Parentally bereaved children are at increased risk of negative consequences, and the mediating factors most consistently identified are found to be related to family function after the loss, including cohesion. However, existing evidence is limited, especially with respect to children and youths' own perception of family cohesion and its long-term effects on health and well-being. Therefore, the aim of this study was to investigate self-reported family cohesion the first year after the loss of a parent to cancer and its association to long-term psychological health and well-being among young adults that were bereaved during their teenage years.

Updating international consensus on best practice in care of the dying: A Delphi study.

Background: Good care of the dying has been defined as being able to die in the place of your choice, free from pain, cared for with dignity and supported by the best possible care. This definition underpinned the development of the '10/40 Model' of care for the dying, in 2013. The model includes 10 'Key Principles' that underpin 40 'Core Outcomes' of care.

Dying during the COVID-19 Pandemic in Sweden: Relatives' Experiences of End-of-Life Care (the CO-LIVE Study).

Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care.

Patterns of Communication About Serious Illness in the Years, Months, and Days before Death.

Background: Communication with patients and families about serious illness impacts quality of life and helps facilitate decision-making.

Objective: To elucidate the pattern of communication about serious illness for patients who have died in an inpatient setting.

Design: Three hundred patients from the Swedish Registry of Palliative Care 2015-2017 were randomly selected for manual chart review.

Sedation in specialized palliative care: A cross-sectional study.

Background: Palliative sedation is used to relieve refractory symptoms and is part of clinical practice in Sweden. Yet we do not know how frequently this practice occurs, how decision-making takes place, or even which medications are preferentially used.

Objectives: To understand the current practice of palliative sedation in Sweden.

A Reduced Deck of Conversation Cards of Wishes and Priorities of Patients in Palliative Care.

The individual wishes and priorities of patients with advanced disease are too often neglected, making a deck of cards with statements reflecting potential wishes and priorities a useful conversation tool. However, in the most ill patients, the card selection and sorting process may be too strenuous. The aims of this study were to explore the wishes and priorities of patients receiving palliative care and to reduce a deck of statement cards to be clinically useable even for the most ill patients.

A novel care guide for personalised palliative care - a national initiative for improved quality of care.

Background: Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory.

Higher Self-Esteem Associated With Less Symptoms of Anxiety and Depression Among Young Adults After the Loss of a Parent to Cancer-A Longitudinal Study.

The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires.

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.