What Happens and What Matters

__Abstract__ Palliative and terminal care. In 2002 the World Health Organization redefined palliative care as “an approach that improves the quality of life of patients and their family facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”. Palliative care can be provided at any time during a patient’s incurable illness, and may be combined with disease-modifying and life-prolonging treatment. Although there is no consensus, neither in clinical practice, nor in scientific literature, on definitions of ‘terminal phase’, ‘terminally ill’ and ‘end of life’, or on similar terms used to describe the care at the end of life, these terms mostly are used for patients whose life expectancy is three months or less. The dying phase is mostly described as the final hours or days of life, when the patient is “actively dying”, and care for the dying as care provided during these final moments. Demographic changes, especially the risen life expectancy, have contributed to an increase in the number of elderly persons in our Western society. Since the last decade, this results in a slowly increasing number of deaths each year in the Netherlands, i.e. from 136.000 in 2005 to 141.000 in 2012. Of these deaths, 73.000 to 108.000 occur after a period of decline in health, and of palliative care, depending on how this is defined

The effectiveness of a nurse-led intervention to support family caregivers in end-of-life care

__Aim:__ To evaluate the feasibility of a structured nurse-led supportive intervention and its effects on family caregivers in end-of-life care at home. __Background:__ Family caregivers are crucial in end-of-life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers’ burden and improve preparedness. However, few nurse-led interventions are available to support family caregivers in end-of-life care at home. __Design:__ We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group. __Methods:__ The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self-Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019. __Impact:__ Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end-of-life care. Trial registration: The Netherlands Trial Register (NL7702)

Perspectives of patients, relatives and nurses on rooming-in for adult patients: A scoping review of the literature

Aim: To explore the perspectives of patients, their relatives and nurses on rooming-in for adult patients. Background: The practice of having family stay overnight with an adult patient in hospital is quite new. To support rooming-in programs, the perspectives from all stakeholders should be taken into account. Methods: All types of studies on rooming-in in adult healthcare settings were included in this scoping review. Rooming-in has been defined as the practice where ‘family members or trusted others are facilitated to continuously stay with the patient and are provided with facilities to sleep in the patient's room’. Results: Seven studies were included: one randomized controlled trial, three qualitative studies, and three correspondence articles. Generally, patients felt safe in the presence of a family member, but could also feel restricted in their freedom and privacy. Family members saw a benefit for the patient, considered rooming-in a moral duty, and were happy to help. Nonetheless, family members reported rooming-in as physically and emotionally stressful. Nurses described that patients were less anxious and more easily adjusted to the hospital environment. Conclusions: The reviewed studies suggest that patients, family members, and nurses have both positive and negative experiences with rooming-in. The concept

Improving the quality of palliative and terminal care in the hospital by a network of palliative care nurse champions: The study protocol of the PalTeC-H project

Background: The quality of care of patients dying in the hospital is often judged as insufficient. This article describes the protocol of a study to assess the quality of care of the dying patient and the contribution of an intervention targeted on staff nurses of inpatient wards of a large university hospital in the Netherlands. Methods/Design. We designed a controlled before and after study. The intervention is the establishment of a network for palliative care nurse champions, aiming to improve the quality of hospital end-of-life care. Assessments are performed among bereaved relatives, nurses and physicians on seven wards before and after introduction of the intervention and on 11 control wards where the intervention is not applied. We focus on care provided during the last three days of life, covered in global ratings of the quality of life in the last three days of life and the quality of dying, and various secondary endpoints of treatment and care affecting quality of life and dying. Discussion. With this study we aim to improve the understanding of and attention for patients' needs, and the quality of care in the dying phase in the hospital and measure the impact of a quality improvement intervention targeted at nurses

Grief after Pandemic Loss:Factors Affecting Grief Experiences (the CO-LIVE Study) (#236876363)

It has been suggested that grief after losing a significant other person during the COVID-19 pandemic is more severe than before the pandemic. However, little is known about the factors associated with COVID-19-related grief. This study aims to examine whether grief among relatives of people who died during the first COVID-19 wave was associated with factors such as (in)sufficient opportunity to be with the dying person, relatives’ appreciation of how the person died, and “unfinished business” between the bereaved and the deceased. The study involved 200 Dutch relatives who had lost a person during the pandemic. Grief was measured with the Hogan Despair subscale. Data were analyzed using correlations and multivariable regression analysis. Our findings revealed that two-thirds of bereaved relatives reported that they had not had sufficient opportunity to be with the dying person in the final days. However, this experience was not significantly correlated with despair. A negative appreciation of the dying process and remaining unfulfilled wishes as part of “unfinished business” between the dying person and their relative were associated with higher levels of despair, particularly among partners. It is crucial to ensure that relatives can experience good end-of-life care for their dying loved one and be enabled to resolve family issues, to mitigate the impact of the pandemic.</p

Challenges in self-management of persons living with advanced cancer:An exploratory, in-depth interview study

OBJECTIVE: To obtain insight in self‐management challenges of persons with advanced cancer and factors that influence their self‐management. METHODS: Exploratory study among persons with advanced cancer. We conducted in‐depth interviews and performed an inductive thematic analysis, using open, axial and selective coding. RESULTS: We interviewed 33 persons with advanced cancer. Four self‐management challenges were identified: (1) Dealing with physical and psychological symptoms and problems. (2) Navigating the illness trajectory, including management of clinical appointments and treatment regimens, end‐of‐life planning life and ‘maintaining normality’. (3) Managing relations with healthcare professionals, including contributing experiential knowledge to medical decision‐making. (4) Navigating changes in the social environment. Some participants responded proactively to these challenges, for example, by actively searching for information to obtain an extensive understanding of their illness and (re)scheduling medical appointments for a better fit in their agenda. Self‐management strategies seemed to be influenced by patients' personality, life history, moment in the illness trajectory and the social environment. CONCLUSION: Self‐management challenges of persons with advanced cancer are based largely outside the professional care setting. Self‐management strategies in response to these challenges are typically aimed at maintaining a normal life. Self‐management support should be tailored to patients' needs and part of trustful partnerships with patients and relatives

Distress among healthcare providers who provided end-of-life care during the COVID-19 pandemic:a longitudinal survey study (the CO-LIVE study)

Introduction: The COVID-19 pandemic had a significant impact on care at the end-of-life due to restrictions and other circumstances such as high workload and uncertainty about the disease. The objective of this study is to describe the degree of various signs experienced by healthcare providers throughout the first 18 months of the pandemic and to assess what provider’s characteristics and care circumstances related to COVID-19 are associated with distress. Methods: A longitudinal survey study among healthcare providers from different healthcare settings who provided end-of-life care during the pandemic’s first 18 months. Data of four time periods were analyzed using descriptive statistics, logistic regression analysis and Generalized Estimating Equation. Results: Of the respondents (n=302) the majority had a nursing background (71.8%) and most worked in a hospital (30.3%). Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, healthcare providers reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. Healthcare providers working in nursing homes and hospitals were more likely to experience signs of distress, compared to healthcare providers working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding. Conclusion: A substantial amount of healthcare providers reported signs of distress during the first 1.5 years of the COVID-19 pandemic. A cause of distress appears to be that healthcare providers cannot provide the care they desire due the pandemic. Even though the pandemic is over, this remains an important and relevant finding, as high workload can sometimes force healthcare providers to make choices about how they provide care. Given that this can cause prolonged stress and this can lead to burnout (and HCPs leaving their current positions), it is now especially important to continue observing the long term developments of the well-being of our healthcare providers in palliative care and provide timely and adequate support where needed.</p