Search

Aim: To explore relatives' needs in terms of bereavement care during euthanasia processes, how healthcare providers respond to these needs, and the degree of commonality between relatives' and healthcare providers' reports. Design: A phenomenological design was employed, utilising reflexive thematic analysis to examine interviews conducted with relatives (N = 19) and healthcare providers (N = 47). Results: Relatives' needs throughout euthanasia processes are presented in five main themes and several subthemes, with similar findings between both sets of participants. Although relatives infrequently communicated their needs explicitly to healthcare providers, they appreciated it when staff proactively met their needs. Healthcare providers aimed to assist with the relatives' grief process by tending to their specific needs. However, aftercare was not consistently offered, but relatives did not have high expectations for professional follow‐up care. Conclusion: Our research offers important directions for healthcare professionals, empowering them to provide needs‐based bereavement care during euthanasia processes. Moreover, it emphasises the importance of recognising the unique needs of relatives and proactively addressing them in the period before the loss to positively contribute to relatives' grief process. Implications for the profession and/or patient care: Insights into relatives' needs in the context of euthanasia. Good practices on how healthcare providers can attend to relatives' needs before, during and after the loss Impact: Current literature and guidelines on needs‐based bereavement care in the context of euthanasia and, more generally, assisted dying, are limited. These findings provide concrete directions for practice in supporting (nearly) bereaved relatives in the context of euthanasia, potentially mitigating adverse health outcomes. Reporting method: Standards for Reporting Qualitative Research (SRQR checklist). Patient or Public contribution: Relatives of deceased cancer patients were involved in the conduct of the study. [ABSTRACT FROM AUTHOR]

Recent literature demonstrates an interdependence between relatives and healthcare providers throughout euthanasia processes. Yet, current guidelines and literature scarcely specify the interactions between healthcare providers and bereaved relatives. The aim of this work consisted of providing an insight into bereaved relatives' experiences (1) of being involved in euthanasia processes and (2) of their interactions with healthcare providers before, during, and after the euthanasia. The research process was guided by the principles of constructivist grounded theory. Nineteen Dutch-speaking bereaved relatives of oncological patients, who received euthanasia at home or in a hospital less than 24 months ago, participated via semi-structured interviews. These interviews were conducted between May 2021 and June 2022. Due to the intensity of euthanasia processes, relatives wanted to be involved as early as possible, in order to receive time, space, and access to professionals' support whilst preparing themselves for the upcoming loss of a family member with cancer. Being at peace with the euthanasia request facilitated taking a supportive attitude, subsequently aiding in achieving a serene atmosphere. A serene atmosphere facilitated relatives' grief process because it helped them in creating and preserving good memories. Relatives appreciated support from healthcare providers, as long as overinvolvement on their part was not occurring. This study advocates for a relational approach in the context of euthanasia and provides useful complements to the existing euthanasia guidelines. [ABSTRACT FROM AUTHOR]

Background and Objectives With worldwide aging it is imperative to understand nurses' perceptions of tiredness of life (ToL) and their ways of dealing with an increasingly common phenomenon. Most research on ToL relates to older individuals' experiences. This study aimed to gain insight into nurses' (a) perceptions of, (b) attitude(s) toward, and (c) ways of dealing with ToL in older patients. Research Design and Methods Qualitative study with elements of constructivist grounded theory. Data were collected by means of semi-structured interviews between February 2016 and June 2017 with a purposive sample of 25 nurses working in home care and nursing homes. Results A careful consideration indicative of an oscillation between 3 levels (e.g., behavioral, cognitive, and affective) is present. The confrontation with persons having ToL instigates a cognitive process of searching to understand the state a person is in, which on its turn ensues in an emotional balancing between courage and powerlessness and a behavioral approach of action or dialogue. Discussion and Implications Our findings indicate that nurses aim to provide good care, sensitive to the older person's needs, but this process is not without ambiguity. This study provides nurse managers with valuable guidance to (a) support nursing staff in dealing with ToL, and (b) advance opportunities for emotionally sensitive care and (individual- and team-based) reflection. Finally, this study offers suggestions for education programs to incorporate ToL in curricula. [ABSTRACT FROM AUTHOR]

Background Literature depicts differences in ethical decision-making (EDM) between countries and intensive care units (ICU). Objectives To better conceptualise EDM climate in the ICU and to validate a tool to assess EDM climates. Methods Using a modified Delphi method, we built a theoretical framework and a self-assessment instrument consisting of 35 statements. This Ethical Decision-Making Climate Questionnaire (EDMCQ) was developed to capture three EDM domains in healthcare: interdisciplinary collaboration and communication; leadership by physicians; and ethical environment. This instrument was subsequently validated among clinicians working in 68 adult ICUs in 13 European countries and the USA. Exploratory and confirmatory factor analysis was used to determine the structure of the EDM climate as perceived by clinicians. Measurement invariance was tested to make sure that variables used in the analysis were comparable constructs across different groups. Results Of 3610 nurses and 1137 physicians providing ICU bedside care, 2275 (63.1%) and 717 (62.9%) participated respectively. Statistical analyses revealed that a shortened 32-item version of the EDMCQ scale provides a factorial valid measurement of seven facets of the extent to which clinicians perceive an EDM climate: self-reflective and empowering leadership by physicians; practice and culture of open interdisciplinary reflection; culture of not avoiding end-of-life decisions; culture of mutual respect within the interdisciplinary team; active involvement of nurses in end-of-life care and decision-making; active decision-making by physicians; and practice and culture of ethical awareness. Measurement invariance of the EDMCQ across occupational groups was shown, reflecting that nurses and physicians interpret the EDMCQ items in a similar manner. Conclusions The 32-item version of the EDMCQ might enrich the EDM climate measurement, clinicians' behaviour and the performance of healthcare organisations. This instrument offers opportunities to develop tailored ICU team interventions. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to explore how nurses and care-assistants (nursing staff) working in six Flemish nursing homes experience and describe their involvement in grief care. Background Although grief in older people is widely described in literature, less is known about how nursing staff in nursing homes offer and perceive grief care. Design A qualitative research design with elements of constructivist grounded theory was used. Methods Loosely structured face-to-face interviews were done with fourteen nurses and care-assistants. Data were collected from October 2013-March 2014. Interview transcripts were analysed using the Qualitative Analysis Guide of Leuven ( QUAGOL) method with support of NVivo 10. Findings Grief care in nursing homes is characterized by a complex tension between two care dimensions: (1) being involved while keeping an appropriate distance; and (2) being while doing. Nursing staff described key enablers and influencing factors for grief care at the level of both the individual and the organizational context. Conclusion Findings suggest an established personal sensitivity for grief care considered from the nursing staff points of view. Nevertheless, a common denominator was the necessity to further develop a supportive and multidisciplinary grief care policy ingrained in the existing care culture. Suggested components of this grief care policy are: (a) centring attention on non-death-related loss and the cumulative nature of loss in residents; (b) building capacity by means of reflective practices; and (c) the importance of self-care strategies for nursing staff. Furthermore, the findings from this study point towards a need for education and training. [ABSTRACT FROM AUTHOR]

Background: Given the worldwide ageing of the population and the changes in the structure of society and family, the likelihood increases that older parents face a serious illness in an adult child and will even outlive their child. Objectives: To gain insight into older parents' experiences, concerns, and dilemmas regarding their position and role as a parent of an adult child with cancer. Design: Qualitative interview design. Setting: A geriatric ward and four oncology wards of a university hospital, several nursing homes, local health service agencies. Participants: Twenty-five parents (age range 65-91 years) of 22 adult children with cancer (age range 33-66 years) of differing stages and types (with a preponderance of breast cancer). Methods: Using a qualitative research methodology underpinned by grounded theory, we conducted semi-structured interviews with a fairly open framework. Results: Suffering in silence emerged as the core category encapsulating three interrelated balancing acts: (1) shielding their child while being shielded by their child, (2) being involved while keeping an adequate distance, and (3) shifting attentional priorities between their child, themselves, and others. The emotional interconnectedness between older parents and their adult child with cancer becomes tangible in the transformational process of their parental role and position described in the three balancing acts. Conclusions: Faced with their child's illness and possible death, older parents experience overwhelming feelings often underestimated by their (close) environment. Nurses need to be susceptible for the needs and experiences of these older parents. For care by nurses to make a difference, their attention must be directed to how older parents can be invigorated in their parenthood while respecting the child's autonomy. [ABSTRACT FROM AUTHOR]

A recent review shows an interdependence between healthcare providers and relatives in the context of euthanasia. Belgian guidelines do focus on the role of certain healthcare providers (physicians, nurses, and psychologists), yet they hardly specify bereavement care services before, during and after the euthanasia. A conceptual model showing underlying mechanisms of healthcare providers' experiences regarding the interaction with and the provision of bereavement care to relatives of cancer patients throughout a euthanasia process. 47 semi-structured interviews with Flemish physicians, nurses and psychologists working in hospitals and/or homecare, conducted from September 2020 to April 2022. Transcripts were analyzed using the Constructivist Grounded Theory Approach. Participants experienced the interaction with relatives as very diverse, which can be visualized as a continuum ranging from negative to positive, depending on each unique case. The achieved degree of serenity was the main contributor in determining their position on the aforementioned continuum. To create this serene atmosphere, healthcare providers undertook actions underpinned by two attitudes (wariness and meticulousness), which are guided by different considerations. These considerations can be categorized into three groups: 1) ideas about a good death and its importance, 2) having the situation well under control and 3) self-reassurance. If relatives were not at peace, most participants said that they deny a request or formulate additional requirements. Moreover, they wanted to ensure relatives can cope with the loss, which was often experienced as intense and time-consuming. Our insights shape needs-based care from healthcare providers' perspective in the context of euthanasia. Future research should explore the relatives' perspective regarding this interaction and the provision of bereavement care. Professionals strive for a serene atmosphere throughout a euthanasia process to ensure relatives can cope with the loss, and the way in which the patient died. [ABSTRACT FROM AUTHOR]

Context: Palliative care for the older person is often limited, resulting in poor quality of dying. Pharmacological management can be one of the components to achieve better symptom control.Objectives: To describe the anticipatory prescription of medication for symptomatic treatment and the deprescription of potentially inappropriate medication during the last days of life.Methods: This was a cross-sectional descriptive study between October 1, 2012 and September 30, 2013 in 23 acute geriatric wards in Flanders, Belgium. Structured after-death questionnaires were filled out by the treating geriatrician for patients hospitalized for more than 48 hours before dying.Results: Anticipatory prescription of medication was present in 65.4% of cases, 45.5% of the cases was prescribed morphine, 15.5% benzodiazepines, and 13.8% scopolamine hydrobromide. A deprescription of potentially inappropriate medication was noted in 67.9% of cases. The likelihood of anticipatory prescription was significantly higher in cases where death was expected (odds ratio [OR] 19; 95% CI 9-40; P < 0.0001) and significantly lower where dementia was present (OR 0.35; 95% CI 0.16-0.74; P < 0.006). The likelihood of deprescription was higher in cases where death was expected (OR 20; 95% CI 10-43; P < 0.0001) and in cases of patients dying from an oncological disease compared with those dying from frailty or dementia (OR 7.0; 95% CI 1.1-45.6, P = 0.042).Conclusion: Anticipatory prescription of medication and deprescription of medication at the end of life in acute geriatric wards could be further optimized. A well-developed intervention to guide health care staff in patient-centered pharmacological management in the last days of life seems to be needed. [ABSTRACT FROM AUTHOR]

Background: Despite the growing incidence of cancer among older people, little is understood about how older patients and their family caregivers experience receiving a cancer diagnosis and treatment and how their experiences mutually influence each other. Such knowledge is needed to provide meaningful support for both the older person and family caregivers. Objectives: Exploring lived experiences of older cancer patients, family caregivers and their interaction. Design: Qualitative interview design. Setting: Six outpatient oncology departments at a University Hospital. Participants: Thirty-two patients (age range 70-86) and 19 family caregivers (age range 42-83). Methods: Semi-structured interviews with a fairly open framework were conducted and analyzed using the constant comparative method inspired by a grounded theory approach. Results: Older patients and family caregivers experience important demands when confronted with cancer. Patients feel the inherent need to search for hope, and the majority are able to do so by employing coping strategies. Because of their older age, patients anticipate getting a serious illness such as a cancer diagnosis. Family caregivers become 'a family member of an older person with cancer' and feel responsible for the patient's well-being and for providing care. If patients are able to maintain a 'positive' story, family caregivers support this ability. If not, they search for a 'positive' story and point this out to the patient. Most family caregivers perceive their care-giving as a normal process and find it difficult to request professional help for themselves. Nevertheless, knowing that professional help is available whenever they need it reassures them. Overall, life continues during the illness experience: the interaction between patients and family caregivers goes on, their relationship proceeds, the coping and care patterns continue. Conclusions: The cancer diagnosis has a major impact on patients and family caregivers. This study offers a framework for understanding what is it like to have cancer in old age and outlines the importance of listening actively to the life stories of patients and family caregivers in order to comprehend coping strategies. This may result in better tailored patient--family centered care. [ABSTRACT FROM AUTHOR]

Context: Symptom management is essential in the end-of-life care of long-term care facility residents.Objectives: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.Methods: A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level.Results: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.Conclusion: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities. [ABSTRACT FROM AUTHOR]

Objectives Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. Design and Methods To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes. [ABSTRACT FROM AUTHOR]