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

Palliative care team consultation and quality of death and dying in a university hospital: A secondary analysis of a prospective study

Purpose Involvement of palliative care experts improves the quality of life and satisfaction with care of patients who are in the last stage of life. However, little is known about the relation between palliative care expert involvement and quality of dying (QOD) in the hospital. We studied the association between palliative care team (PCT) consultation and QOD in the hospital as experienced by relatives. Methods We conducted a secondary analysis of data from a prospective study among relatives of patients who died from cancer in a university hospital and compared characteristics and QOD of patients for whom the PCT was or was not consulted. Results 175 out of 343 (51%) relatives responded to the questionnaire. In multivariable linear regression PCT was associated with a 1.0 point better QOD (95% CI 0.07–1.96). In most of the subdomains of QOD, we found a non-significant trend towards a more favorable outcome for patients for whom the PCT was consulted. Patients for whom the PCT was consulted had more often discussed their preferences for medical treatment, had more often been aware of their imminent death and had more often been at peace with their imminent death. Further, patients for whom the PCT was consulted and their relatives had more often been able to say goodbye. Relatives had also more often been present at the moment of death when a PCT had been consulted. Conclusion For patients dying in the hospital, palliative care consultation is associated with a favorable QOD

Palliative care team consultation and quality of death and dying in a university hospital: a secondary analysis of a prospective study

PURPOSE: Involvement of palliative care experts improves the quality of life and satisfaction with care of patients who are in the last stage of life. However, little is known about the relation between palliative care expert involvement and quality of dying (QOD) in the hospital. We studied the association between palliative care team (PCT) consultation and QOD in the hospital as experienced by relatives. METHODS: We conducted a secondary analysis of data from a prospective study among relatives of patients who died from cancer in a university hospital and compared characteristics and QOD of patients for whom the PCT was or was not consulted. RESULTS: 175 out of 343 (51%) relatives responded to the questionnaire. In multivariable linear regression PCT was associated with a 1.0 point better QOD (95% CI 0.07-1.96). In most of the subdomains of QOD, we found a non-significant trend towards a more favorable outcome for patients for whom the PCT was consulted. Patients for whom the PCT was consulted had more often discussed their preferences for medical treatment, had more often been aware of their imminent death and had more often been at peace with their imminent death. Further, patients for whom the PCT was consulted and their relatives had more often been able to say goodbye. Relatives had also more often been present at the moment of death when a PCT had been consulted. CONCLUSION: For patients dying in the hospital, palliative care consultation is associated with a favorable QOD

Self-management of patients with advanced cancer

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals

A cluster randomized controlled trial on the effects and costs of advance care planning in elderly care: Study protocol

Background: Currently, health care and medical decision-making at the end of life for older people are often insufficiently patient-centred. In this trial we study the effects of Advance Care Planning (ACP), a formalised process of timely communication about care preferences at the end of life, for frail older people. Methods/Design: We will conduct a cluster randomised controlled trial among older people residing in care homes or receiving home care in the Netherlands. The intervention group will receive the ACP program Respecting Choices® in addition to usual care. The control group will receive usual care only. Participants in both groups will fill out questionnaires at baseline and after 12 months. We hypothesize that ACP will lead to better patient activation in medical decision making and quality of life, while reducing the number of medical interventions and thus health care costs. Multivariate analysis will be used to compare differences between the intervention group and the control group at baseline and to compare differences in changes after 12 months following the inclusion. Discussion: Our study can contribute to more understanding of the effects of ACP on patient activation and quality of life in frail older people. Further, we will gain insight in the costs and cost-effectiveness of ACP. This study will facilitate ACP policy for older people in the Netherlands. Trial registration: Nederlands Trial Register: NTR4454

How nurses support family caregivers in the complex context of end-of-life home care

Background: Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods: Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results: We identified two underlying nursing perspectives on supporting fami

Effect of palliative care nurse champions on the quality of dying in the hospital according to bereaved relatives: A controlled before-and-after study

Background: To improve the quality of end-of-life care, hospitals increasingly appoint palliative care nurse champions. Aim: We investigated the effect of nurse champions on the quality of life during the last 3 days of life and the quality of dying as experienced by bereaved relatives. Design: A controlled before-and-after study (June 2009-July 2012). Halfway, in each of seven intervention wards, two nurse champions were appointed; 11 wards served as control wards. The quality of life during the last 3 days of life, quality of dying and multiple dimensions of quality of dying were compared before and after the introduction of nurse champions. Setting: In a university hospital, each death at non-intensive care units was followed up by an invitation to relatives (10-13 weeks later) to answer a questionnaire. Results: For the two periods, data were collected on 86 and 84 patients in intervention wards and on 108 and 118 patients in control wards (overall response: 52%). In the intervention wards, no differences were found in the quality of life during the last 3 days of life and the quality of dying scores: in both periods, median score for the quality of life during the last 3 days of life was 3.0 and for the quality of dying 7.0. No differences were found in multiple quality of dying dimensions. In control wards, the median quality of dying score was 7.0 pre-intervention and 6.0 post-intervention (p = 0.04). Other scores were comparable with those in intervention wards. Conclusion: Performing a complex intervention study in palliative care proved to be feasible. This study showed no differences in the experiences of bereaved relatives after introduction of nurse champions. The complexity of palliative care in the hospital might require more intensive and longer training of nurse champions