Challenges in recognizing and discussing changes in a resident's condition in the palliative phase: focus group discussions with nursing staff working in nursing homes about their experiences.

Background: Most nursing home residents have complex care needs, require palliative care and eventually die in these facilities. Timely recognition of changes in a resident's condition is crucial for providing appropriate care. Observations by nursing staff play a significant role in identifying and interpreting these changes.

Communication about euthanasia in Dutch nursing homes.

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future.

End-of-life treatment preference discussions between older people and their physician before and during the COVID-19 pandemic: cross sectional and longitudinal analyses from the Longitudinal Aging Study Amsterdam.

Background: COVID-19 could lead to hospitalisation and ICU admission, especially in older adults. Therefore, during the pandemic, it became more important to discuss wishes and preferences, such as older peoples' desire for intensive treatment in a hospital in acute situations, or not. This study explores what percentage of Dutch older people aged 75 and over discussed Advance Care Planning (ACP) topics with a physician during the first months of the COVID-19 pandemic and whether this was different in these people before the COVID-19 pandemic.

How physicians see nurses' role in decision-making about life-prolonging treatments in patients with a short life expectancy: An interview study.

Objective: Exploring physicians' views on hospital nurses' role in decision-making about potentially life-prolonging treatments in patients with a short life expectancy.

Methods: A qualitative study using semi-structured interviews with hospital physicians. Data were collected from May to September 2019 and analyzed following principles of thematic analysis.

Awareness and Actual Knowledge of Palliative Care Among Older People: A Dutch National Survey.

Context: Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge of palliative care.

Objectives: To determine awareness and actual knowledge of palliative care and explore factors that contribute to knowledge of palliative care among older people.

Advance care planning (ACP) in glioblastoma patients: Evaluation of a disease-specific ACP program and impact on outcomes.

Background: The feasibility of implementing an advance care planning (ACP) program in daily clinical practice for glioblastoma patients is unknown. We aimed to evaluate a previously developed disease-specific ACP program, including the optimal timing of initiation and the impact of the program on several patient-, proxy-, and care-related outcomes.

Methods: The content and design of the ACP program were evaluated, and outcomes including health-related quality of life (HRQoL), anxiety and depression, and satisfaction with care were measured every 3 months over 15 months.

End of life in general practice: trends 2009-2019.

Objectives: To assess possible trends between 2009 and 2019 in the Netherlands of palliative care indicators: the provision of palliative care or treatment, hospitalisations in the last month before death, use of specialised palliative care services and place of death.

Methods: The study design was a repeated retrospective cross-sectional design with questionnaires filled in by general practitioners within a clustered sample of 67 Sentinel practices. Patients whose death was non-sudden, and thus could have received palliative care, between 1 January 2009 and 31 December 2019 were included in the study, resulting in 3121 patients.

Caregiver's burden at the end of life of their loved one: insights from a longitudinal qualitative study among working family caregivers.

Background: Growing numbers of people with advanced illnesses who wish to die at home, a concurrent decline in the accessibility of professional home care, and policies aiming at prolonging work participation are increasing the reliance on family caregivers. This study aimed to describe trajectories in burden of working family caregivers who care for patients with a life-threatening illness, and identify factors in work and care that are related to changes in burden over time.

Methods: Semi-structured interviews were held in one to four rounds between July 2018 and November 2020 with 17 working family caregivers of patients with a life-threatening illness living at home.

Nurses' perspective on their involvement in decision-making about life-prolonging treatments: A quantitative survey study.

Aims: In hospital settings, decisions about potentially life-prolonging treatments are often made in a dialogue between a patient and their physician, with a focus on active treatment. Nurses can have a valuable contribution in this process, but it seems they are not always involved. Our aim was to explore how hospital nurses perceive their current role and preferred role in shared decision-making about potentially life-prolonging treatment in patients in the last phase of life.

Dignity reflections based on experiences of end-of-life care during the first wave of the COVID-19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study).

Background: The COVID-19 pandemic affects care practices for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for patients and their relatives in the physical, psychological, social and spiritual domains.

Aim: To give insight into aspects of end-of-life care practices that might have jeopardised or supported the dignity of the patients and their family members during the first wave of the COVID-19 pandemic in the Netherlands.

Methodology: A qualitative study involving 25 in-depth interviews with purposively sampled bereaved relatives of patients who died during the COVID-19 pandemic between March and July 2020 in the Netherlands.

Family support on intensive care units during the COVID-19 pandemic: a qualitative evaluation study into experiences of relatives.

Background: During the first peak of the COVID-19 pandemic in the Netherlands, relatives of patients with COVID-19 admitted to Intensive Care Units (ICUs) were severely restricted in visiting their relatives and in communicating with treating physicians. Family communication is a core element of critical care, however, this pandemic forced medical ICU staff to arrange alternative family support for instance by Family Support Teams (FSTs), consisting of non-ICU affiliated staff who telephonically contacted relatives. This study aims to examine relatives' experiences with FSTs on two ICUs of a Dutch university medical centre, and to evaluate its working strategies.

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019.

Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives.

Aim: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers.

Design: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019.

Intentionally ending one's own life in the presence or absence of a medical condition: A nationwide mortality follow-back study.

In the Netherlands, people who wish to intentionally end their own life can request for physician assistance in dying (PAD). Having a classifiable medical condition is a prerequisite to receive PAD. Some people, either in the presence or absence of a medical condition, choose to end life without assistance from a physician.

Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands.

Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs.

Method: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home.

Information meetings on end-of-life care for older people by the general practitioner to stimulate advance care planning: a pre-post evaluation study.

Background: To increase knowledge about options people have concerning end-of-life-care issues, General Practitioners (GPs) can organise meetings to inform their older patients. We evaluated these meetings, using the following research questions: How did the attendees experience the information meeting? Was there a rise in Advance Care Planning (ACP) behaviour after the information meeting? Was there a change in trust people have that physicians will provide good care at the end of life and that they will follow their end-of-life wishes after the information meetings?

Methods: Four GPs invited all patients of 75 years and older registered in their GP practices to the meeting via a written letter. Four meetings of 2 h took place in 2016.

Current wishes to die; characteristics of middle-aged and older Dutch adults who are ready to give up on life: a cross-sectional study.

Background: Literature shows that middle-aged and older adults sometimes experience a wish to die. Reasons for these wishes may be complex and involve multiple factors. One important question is to what extent people with a wish to die have medically classifiable conditions.

Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study).

Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19.

Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process.

Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020.

Patients with Metastatic Lung Cancer and Oncologists' Views on Achievement of Treatment Goals and Making the Right Treatment Decision: A Prospective Multicenter Study.

Background: Previous studies have investigated patients' treatment goals before starting a treatment for metastatic lung cancer. Data on the evaluation of treatment goals are lacking.

Aim: To determine if patients with metastatic lung cancer and their oncologists perceive the treatment goals they defined at the start of systemic treatment as achieved after treatment and if in hindsight they believe it was the right decision to start systemic therapy.

Association Between Subjective Remaining Life Expectancy and Advance Care Planning in Older Adults: A Cross-Sectional Study.

Context: Advance care planning (ACP) becomes more relevant with deteriorating health or increasing age. People might be more inclined to engage in ACP as they feel that they are approaching end of life. The perception of approaching end of life could be quantified as subjective remaining life expectancy (SRLE).

Feasibility and effectiveness of tools that support communication and decision making in life-prolonging treatments for patients in hospital: a systematic review.

Objective: Patients with advanced diseases and frail older adults often face decisions regarding life-prolonging treatment. Our aim was to provide an overview of the feasibility and effectiveness of tools that support communication between healthcare professionals and patients regarding decisions on life-prolonging treatments in hospital settings.

Design: Systematic review: We searched PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and Google Scholar (2009-2019) to identify studies that reported feasibility or effectiveness of tools that support communication about life-prolonging treatments in adult patients with advanced diseases or frail older adults in hospital settings.

What Goals Do Patients and Oncologists Have When Starting Medical Treatment for Metastatic Lung Cancer?

Background: Metastatic lung cancer is an incurable disease that can be treated with systemic therapy. These treatments might prolong survival and reduce symptoms, but they may also cause serious adverse effects. We studied the treatment goals of patients with metastasized lung cancer and their oncologists before starting systemic therapy, concordance between patients' and oncologists' goals, and feasibility of these goals.