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. METHODS: Focus group discussions were conducted with nursing staff from ten nursing homes in the Netherlands to explore their experiences and challenges in recognizing and discussing changes in a resident's condition. These discussions were analysed following the principles of thematic analysis. RESULTS: The analysis of the challenges nursing staff face in identifying and interpreting changes in a resident's condition, resulted in three themes. First, that recognizing changes is considered complex, because it requires specialized knowledge and skills that is generally not part of their education and must partly be learned in practice. This also depends on how familiar the nursing staff is with the resident. Furthermore, different people observe residents through different lenses, depending on their relation and experiences with residents. This could lead to disagreements about the resident's condition. Lastly, organizational structures such as the resources available to document and discuss a resident's condition and the hierarchy between nursing home professionals often hindered discussions and sharing observations. CONCLUSION: Nursing staff's experiences highlight the complexity of recognizing and discussing changes in nursing home residents' conditions. While supporting the observational skills of nursing staff is important, it is not enough to improve the quality of care for nursing home residents with palliative care needs. As nursing staff experiences challenges at different, interrelated levels, improving the process of recognizing and discussing changes in nursing home residents requires an integrated approach in which the organization strengthens the position of nursing staff. It is important that their observations become a valued and integrated and part of nursing home care.

Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study).

This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning.

Identifying patients who could benefit from palliative care by making use of the general practice information system: the Surprise Question versus the SPICT.

OBJECTIVE: We compared the performance of two tools to help general practitioners (GPs) identify patients in need of palliative care: the Surprise Question (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT). METHODS: Prospective cohort study in two general practices in the Netherlands with a size of 3640 patients. At the start of the study the GPs selected patients by heart using the SQ. The SPICT was translated into a digital search in electronic patient records. The GPs then selected patients from the list thus created. Afterwards the GPs were interviewed about their experiences. The following year a record was kept of all the patients deceased in both practices. We analysed the characteristics of the patients selected and the deceased. We calculated the performance characteristics concerning predicting 1-year mortality. RESULTS: The sensitivity of the SQ was 50%, of the SPICT 57%; the specificity 99% and 98%. When analysing the deceased (n = 36), 10 died relatively suddenly and arguably could not be identified. Leaving out these 10, the sensitivity of the SQ became 69%, of the SPICT 81%. The GPs found the performance of the digital search quite time consuming. CONCLUSION: The SPICT seems to be better in identifying patients in need of palliative care than the SQ. It is also more time consuming than the SQ. However, as the digital search can be performed more easily after it has been done for the first time, initial investments can repay themselves.

Consensus on treatment for residents in long-term care facilities: perspectives from relatives and care staff in the PACE cross-sectional study in 6 European countries.

BACKGROUND: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives. METHODS: In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus. RESULTS: Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland). CONCLUSIONS: In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus.

Care staff's self-efficacy regarding end-of-life communication in the long-term care setting: Results of the PACE cross-sectional study in six European countries.

BACKGROUND: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors. OBJECTIVES: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication. DESIGN: Cross-sectional survey. SETTINGS: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n = 290). PARTICIPANTS: Nurses and care assistants (n = 1680) completed a self-efficacy scale and were included in the analyses. METHODS: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level. RESULTS: Thde proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30-2.65]); nurses (compared to care assistants) (1.75 [1.20-2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53-3.21] and 3.11 [2.05-4.71]; formal palliative care training (1.71 [1.32-2.21]); working in direct care for over 10 years (1.53 [1.14-2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30-2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03-1.88]). CONCLUSION: Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff.

Physician Visits and Recognition of Residents' Terminal Phase in Long-Term Care Facilities: Findings From the PACE Cross-Sectional Study in 6 EU Countries.

OBJECTIVES: To describe the relation between physician visits and physicians' recognition of a resident's terminal phase in long-term care facilities (LTCFs) in Belgium, England, Finland, Italy, the Netherlands, and Poland. DESIGN: In each country, a cross-sectional study was conducted across representative samples of LTCFs. Participating LTCFs reported all deaths of residents in the previous 3 months, and structured questionnaires were sent to several proxy respondents including the treating physician. SETTING AND PARTICIPANTS: 1094 residents in 239 LTCFs, about whom 505 physicians returned the questionnaire. MEASURES: Number of physician visits, the resident's main treatment goal, whether physicians recognized the resident's terminal phase and expected the resident's death, and resident and physician characteristics. RESULTS: The number of physician visits to residents varied widely between countries, ranging from a median of 15 visits in the last 3 months of life in Poland to 5 in England, and from 4 visits in the last week of life in the Netherlands to 1 in England. Among all countries, physicians from Poland and Italy were least inclined to recognize that the resident was in the terminal phase (63.0% in Poland compared to 80.3% in the Netherlands), and residents in these countries had palliation as main treatment goal the least (31.8% in Italy compared to 92.6% in the Netherlands). Overall however, there were positive associations between the number of physician visits and the recognition of the resident's terminal phase and between the number of physician visits and the resident having palliation as main treatment goal in the last week of life. CONCLUSIONS AND IMPLICATIONS: This study suggests that LTCFs should be encouraged to work collaboratively with physicians to involve them as much as possible in caring for their residents. Joint working will facilitate the recognition of a resident's terminal phase and the timely provision of palliative care.

"Keep All Thee 'Til the End": Reclaiming the Lifeworld for Patients in the Hospice Setting.

St Christopher's Hospice, London, was founded to provide specialist care to the incurably ill. We studied the dimensions of difference that set St Christopher's Hospice apart from hospital care of the dying, focusing on physical space and social organization. Material from 1953 to 1980 from the Cicely Saunders Archive was analyzed qualitatively. Through thematic analysis, quotes were found and analyzed using open coding. Five themes were developed. Themes identified were home/homelike, community, consideration of others, link with outside world, and privacy. The hospice philosophy functioned as the catalyst for the development of the physical environment of St Christopher's Hospice. Taking Habermas' concept of lifeworld, it seems that, in contrast to acute care, the need for hospice to formulate their own lifeworld to support and fully engage patients was central. As lifeworlds are culture sensitive, this underlines the need for variation in design and organization of hospices around the world.

[Appropriate care in the last phase of life]. / Passende zorg in de laatste levensfase.

OBJECTIVE: To identify the types of care that patients and relatives perceive as appropriate or inappropriate in the last phase of life. DESIGN: Questionnaire survey. METHOD: By means of an internet questionnaire with open questions, we asked patients and relatives about their experiences of care in the last phase of life and if they found it appropriate or inappropriate, and why. We recruited via e-mails, Twitter, Facebook, newsletters and links on homepages of patient organisations. Members of a Dutch large organisation for older people (Unie KBO) received the questionnaire on paper. RESULTS: Forty-five patients and 547 relatives described received one or more cases. We found 429 cases of appropriate care and 309 different cases of inappropriate care. We identified five common dimensions of appropriate and inappropriate care, i.e., supportive care, treatment decisions, location of care, following the patient's wishes and communication. In the cases of appropriate care, all five dimensions were regularly mentioned; supportive care being most-frequently mentioned. In cases of inappropriate care, the dimensions treatment decisions, supportive care and communication were most often mentioned. Descriptions of appropriate care more frequently concerned patients with cancer, and descriptions of inappropriate care more frequently concerned patients with other somatic conditions or psychiatric conditions. Nurses or carers and general practitioners were more often mentioned in descriptions of appropriate care, and medical specialists more often mentioned in descriptions of inappropriate care. CONCLUSION: Appropriate care appears to be a wide-ranging term covering supportive care, treatment decisions, communication, following the patient's wishes, and the location where care is provided. Inappropriate treatment decisions and communication problems are the main threats to appropriate care in the last phase of life.

Palliative care in mental health facilities from the perspective of nurses: a mixed-methods study.

WHAT IS KNOWN ON THE SUBJECT?: Nurses play an important role in monitoring and supporting patients and their relatives at the end of life. To date, there is a lack of recent empirical research on the experiences of psychiatric nurses in providing palliative care to psychiatric patients who suffer from life-threatening physical co-morbidity. The limited literature available indicates that palliative care for psychiatric patients needs to be improved. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This explorative study is unique in offering an insight into current palliative care practice for psychiatric patients and showed that one in three nurses working in Dutch mental health facilities is involved in palliative care provision. Important elements of palliative care, i.e.: care domains, multidisciplinary approach, early recognition and family care are recognized by nurses. Moreover, in palliative care for psychiatric patients there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Patient characteristics and little attention for palliative care within mental health facilities were found to hamper timely and adequate palliative care provision by nurses. WHAT ARE THE IMPLICATIONS FOR RESEARCH AND PRACTICE?: Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of this vulnerable patient group. Since mental health care is increasingly provided ambulatory, the development of palliative care for psychiatric patients outside mental health facilities should be closely monitored. ABSTRACT: Introduction Recent empirical research on palliative care for psychiatric patients is lacking. Aim The aim of this study was to explore nurses' experiences with and identify barriers to providing palliative care to psychiatric patients in Dutch mental health facilities. Methods Mixed-methods; 137 nurses working in Dutch mental health facilities completed a survey. Nine participated in in-depth interviews. Results Thirty-six percent of nurses had experience with providing palliative care to psychiatric patients with physical co-morbidity in the past 2 years. Of all patients, 63% received physical care before death, 46% psychosocial care and 33% spiritual care. In 91% of all cases, care was provided by multidisciplinary teams. Patient characteristics and little attention to palliative care were barriers for timely and adequate palliative care. Discussion In palliative care for psychiatric patients, there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Yet there are barriers to adequate palliative care provision. Implications for practice Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of psychiatric patients. Since mental health care is increasingly provided ambulatory, palliative care for psychiatric patients outside mental health facilities should be closely monitored.

[Perspectives of medical specialists on sharing decisions in cancer care: a qualitative study concerning chemotherapy decisions with patients with recurrent glioblastoma]. / Wel of geen kankerbehandeling in de resterende tijd? Specialisten over gedeelde besluitvorming bij recidiverend glioblastoom.

BACKGROUND: In cancer care, difficult decisions concerning advanced treatment need to be made, weighing possible life prolongation against harmful side effects. Treatment is frequently started, showing the need to explore how decisions are made. Little is known about the perspectives of physicians on sharing decision making with patients. This qualitative study aimed to describe the perspectives of medical specialists on the decision-making process with patients with glioblastoma concerning starting new treatment. METHODS: Qualitative interviews were held with medical specialists. One focus group was organized with medical professionals. Their opinions about elements of shared decision making and the applicability in the context of patients with glioblastoma were assessed. The topic list for the focus group was based on the analysis of the interviews. Qualitative analysis of the transcripts was performed by three researchers independently. RESULTS: Medical specialists considered shared decision making to be important; however, they did not adhere to its elements. Stopping treatment was not considered equal to continuing treatment. Exploration of the patients' wishes was done implicitly, and shared responsibility for the decision was not highly recognized. The main barriers to shared decision making were preferences of both patients and specialists for starting or continuing treatment and assumptions of physicians about knowing what patients want. CONCLUSION: Medical specialists recognized the importance of patient involvement but experienced difficulty in sharing decision making in practice. Elements of shared decision making are partly followed but do not guide decision making. To improve cancer care, education of medical specialists and adjustment to the elements are needed to involve patients.