How end-of-life care was limited during the first 18 months of the COVID-19 pandemic: a longitudinal survey study among healthcare providers (the CO-LIVE study).

BACKGROUND: During the COVID-19 pandemic, the way in which end-of-life care was provided, underwent a lot of changes and therefor different domains of end-of-life care were impacted. The aim of this study is to describe whether health care providers considered end-of-life care (in medical, nursing, psychosocial and spiritual care) limited by the pandemic through the first 18 months of the COVID-19 pandemic, and examine associations with COVID-19 related circumstances of care (e.g. visit restrictions) and health care providers' characteristics. 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 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%). Especially in the first wave end-of-life care in all aspects was limited according to a substantial part of health care providers (between 29.7 and 57.7%). Psychosocial and spiritual care were more limited than medical and nursing care during all time periods. Care being limited according to health care providers was associated with visit restrictions, shortness of personal protective equipment or restrictions in caring for the deceased and decreased over time. CONCLUSION: The COVID-19 pandemic impacted different aspects of end-of-life care throughout the pandemic's first 18 months. Over the course of the pandemic health care providers seemed to have invented ways to adjust their work in order to minimize the effect of limiting measures. More involvement of health care providers in decision-making may improve the prioritization of measures to deal with crisis situations in care. These reflections highlight priorities during crises and the role healthcare providers could play in maintaining good end-of-life care. This remains relevant in new health crises, where care may differ from what is considered good quality of care.

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.

Relatives' grief at three moments after death of a loved one during COVID-19 pandemic (the CO-LIVE study).

COVID-19 has complicated grieving experiences. Rich qualitative description of these experiences is lacking. We interviewed 10 bereaved relatives (mainly daughters) 2-3 times each: shortly after their relative died in the first wave of COVID-19 pandemic, and after 12 and 18 months (29 interviews in total). Analyses took place according to inductive content analysis. Losses were threefold: the loss of the loved one; of the (desired) way to say farewell, and of social support. We identified five ways in which the three COVID-19 related loss experiences interacted: overshadowed grief, cumulative grief, triggered grief, derailed grief, and conciliatory grief. This study demonstrated that pre-COVID-19 diagnoses and understandings of grief are not sufficient to picture grief during and after the COVID-19 pandemic. These grief experiences are more complex and deserve further exploration.

Associated factors of hope in cancer patients during treatment: A systematic literature review.

AIM: To identify the associated factors of hope during treatment in cancer patients. BACKGROUND: Hope is very important to cancer patients at all stages of the disease process. Hope is seen as an important coping mechanism. Most research about hope in cancer patients considered the end of life or in palliative care. Several and different factors are associated with hope. It is not yet sufficiently clear which factors are associated with hope during the treatment. DESIGN: A systematic literature review of quantitative empirical studies on hope in cancer patients during treatment. DATA SOURCES: Search in MEDLINE (PubMed interface), CINAHL (EBSCO interface), Psychinfo and Cochrane (January 2009-December 2018). REVIEW METHODS: Empirical quantitative studies were included regardless of the disease stage, written in English or Dutch, measuring hope from the perspective of cancer patients. Two authors independently screened all the studies and assessed their quality. RESULTS: Thirty-three studies were included. Positive relationship has been established between hope and quality of life, social support, spiritual and existential well-being. Hope appears to be negatively associated with symptom burden, psychological distress and depression. There appears to be no relationship between hope and demographic and clinical variables. The relationship between anxiety and hope remains unclear. CONCLUSIONS: Hope primarily seems to be a process that takes place in a person's inner being rather than being determined from outside. IMPACT: Health professionals may want to focus on the meaning of hope for cancer patients in relation to the associated factors. A better understanding of the meaning of hope during treatment can be of great value in supporting cancer patients with regard to treatment decisions, psychosocial support, the experienced quality of life and symptom burden and any wishes they may have with regard to advanced care planning.

Health professionals' dealing with hope in palliative patients with cancer, an explorative qualitative research.

Hope is important for individuals with cancer in palliative care. Health professionals' perspective on hope affects the communication with palliative patients. The aim of this study was to explore how Dutch health professionals deal with palliative patients with cancer who hope for prolongation of life. Focus group discussions (FGD) were conducted. An interpretive description approach was used to understand the interpretation of and reaction to hopefulness in palliative patients with cancer by health professionals. Three FGDs were held, each consisting of five to ten health professionals working with palliative patients recruited in a general Dutch hospital and homecare organisation. The ways in which the participating health professionals interpret hope in palliative individuals with cancer and their behaviour towards these hopeful palliative patients are shaped by their reliance on their own normative ideas. Patients' hopefulness generally violates these norms and is, therefore, considered a problem that requires intervention. Hope that does not correspond with the medical facts is experienced as problematic by Dutch health professionals who therefore believe they should intervene and do something about it. Health professionals are challenged to face and address patients' and families' perceptions of hope, especially when those perceptions might differ from their own as professionals.