Definition and validation of the nursing diagnosis label "wish to die": a research protocol.

BACKGROUND: Euthanasia has been incorporated into the health services of seven countries. The legalisation of these practices has important repercussions for the competences of nurses, and it raises questions about their role. When a patient with advanced disease expresses a wish to die, what is expected of nurses? What are the needs of these patients, and what kind of care plan do they require? What level of autonomy might nurses have when caring for these patients? The degree of autonomy that nurses might or should have when it comes to addressing such a wish and caring for these patients has yet to be defined. Recognising the wish to die as a nursing diagnosis would be an important step towards ensuring that these patients receive adequate nursing care. This study-protocol aims to define and validate the nursing diagnosis wish to die in patients with advanced disease, establishing its defining characteristics and related factors; to define nursing-specific interventions for this new diagnosis. METHODS: A prospective three-phase study will be carried out. Phase-A) Foundational knowledge: an umbrella review of systematic reviews will be conducted; Phase-B) Definition and validation of the diagnostic nomenclature, defining characteristics and related factors by means of an expert panel, a Delphi study and application of Fehring's diagnostic content validation model; Phase-C) Definition of nursing-specific interventions for the new diagnosis. At least 200 academic and clinical nurses with expertise in the field of palliative care or primary health care will be recruited as participants across the three phases. DISCUSSION: The definition of the wish to die as a nursing diagnosis would promote greater recognition and autonomy for nurses in the care of patients who express such a wish, providing an opportunity to alleviate underlying suffering through nursing-specific interventions and drawing attention to the needs of patients with advanced disease. The new diagnosis would be an addition to nursing science and would provide a framework for providing care to people with advanced disease who express such a wish. Nurses would gain professional autonomy about identifying, exploring and responding clinically to such a wish.

Development of a Guide to Multidimensional Needs Assessment in the Palliative Care Initial Encounter (MAP).

CONTEXT: Ensuring patient-centered palliative care requires a comprehensive assessment of needs beginning in the initial encounter. However, there is no generally accepted guide for carrying out this multidimensional needs assessment as a first step in palliative intervention. OBJECTIVES: To develop an expert panel-endorsed interview guide that would enable proactive and systematic Multidimensional needs Assessment in the Palliative care initial encounter (MAP). METHODS: A preliminary version of the MAP guide was drafted based on a published literature review, published semistructured interviews with 20 patients, 20 family carers, and 20 palliative care professionals, and a nominal group process with palliative care professionals and a representative of the national patient's association. Consensus regarding its content was obtained through a modified Delphi process involving a panel of palliative care physicians from across Spain. RESULTS: The published systematic literature review and qualitative study resulted in the identification of 55 needs, which were sorted and grouped by the nominal group. Following the Delphi process, the list of needs was reduced to 47, linked to six domains: Clinical history and medical conditions (n = 8), Physical symptoms (n = 17), Functional and cognitive status (n = 4), Psycho-emotional symptoms (n = 5), Social issues (n = 8), and Spiritual and existential concerns (n = 5). CONCLUSION: MAP is an expert panel-endorsed semi-structured clinical interview guide for the comprehensive, systematic, and proactive initial assessment to efficiently assess multiple domains while adjusting to the needs of each patient. A future study will assess the feasibility of using the MAP guide within the timeframe of the palliative care initial encounter.

What makes the palliative care initial encounter meaningful? A descriptive study with patients with cancer, family carers and palliative care professionals.

BACKGROUND: The palliative care initial encounter can have a positive impact on the quality of life of patients and family carers if it proves to be a meaningful experience. A better understanding of what makes the encounter meaningful would reinforce the provision of person-centred, quality palliative care. AIM: To explore the expectations that patients with cancer, family carers and palliative care professionals have of this initial encounter. DESIGN: Qualitative descriptive study with content analysis of transcripts from 60 semi-structured interviews. SETTING/PARTICIPANTS: Twenty patients with cancer, 20 family carers and 20 palliative care professionals from 10 institutions across Spain. RESULTS: Four themes were developed from the analysis of interviews: (1) the initial encounter as an opportunity to understand what palliative care entails; (2) individualised care; (3) professional commitment to the patient and family carers: present and future; and (4) acknowledgement. CONCLUSION: The initial encounter becomes meaningful when it facilitates a shared understanding of what palliative care entails and acknowledgement of the needs and/or roles of patients with cancer, family carers and professionals. Further studies are required to explore how a perception of acknowledgement may best be fostered in the initial encounter.

Temporal validation of a risk prediction model for breast cancer-related lymphoedema in European population: A retrospective study.

AIMS: To perform temporal validation of a risk prediction model for breast cancer-related lymphoedema in the European population. DESIGN: Temporal validation of a previously developed prediction model using a new retrospective cohort of women who had undergone axillary lymph node dissection between June 2018 and June 2020. METHODS: We reviewed clinical records to identify women who did and did not develop lymphoedema within 2 years of surgery and to gather data regarding the variables included in the prediction model. The model was calibrated by calculating Spearman's correlation between observed and expected cases. Its accuracy in discriminating between patients who did versus did not develop lymphoedema was assessed by calculating the area under the receiver operating characteristic curve (AUC). RESULTS: The validation cohort comprised 154 women, 41 of whom developed lymphoedema within 2 years of surgery. The value of Spearman's coefficient indicated a strong correlation between observed and expected cases. Sensitivity of the model was higher than in the derivation cohort, as was the value of the AUC. CONCLUSION: The model shows a good capacity to discriminate women at risk of lymphoedema and may therefore help in developing improved care pathways for individual patients. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Identifying risk factors for lymphoedema secondary to breast cancer treatment is vital given its impact on women's physical and emotional well-being. IMPACT: What problem did the study address? Risk of BCRL. What were the main findings? The prediction model has a good capacity to discriminate women at risk of lymphoedema. Where and on whom will the research have an impact? In clinical practice with women at risk of BCRL. REPORTING METHOD: STROBE checklist. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: It presents a validated risk prediction model for BCRL. NO PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution in the conduct of this study.

Experiences of Isolation among Patients Hospitalized during an Infectious Disease Outbreak: A Systematic Review and Meta-Ethnography.

Hospital isolation is common for people during infectious disease outbreaks. Anxiety, stress, depression and other psychosocial outcomes have been reported due to these measures. However, there is scarce evidence about the experience of being isolated and about best practices for empathic clinical care in these circumstances. The aim of this study was to explore the experience of isolation on patients hospitalized during an infectious disease outbreak. A systematic review and meta-ethnography was carried out. A search strategy was applied to the PubMed, CINAHL, Web of Science, and PsycINFO databases on April 14, 2021 and again May 2, 2022. Data synthesis was conducted using Noblit and Hare's method of qualitative thematic synthesis. Twenty reports were included in this review: 16 qualitative, two mixed-methods (only the qualitative part was analyzed), plus 2 personal view pieces. They described the experiences of a total of 337 people hospitalized and isolated with an infectious disease. Following analysis and coding of data, four themes emerged: 1) Feelings triggered by isolation; 2) Coping strategies; 3) Connection/disconnection; 4) Factors that influence the experience of isolation. Despite a sensitive search strategy, limited studies represent patient experiences using qualitative methods. The experience of isolation among patients hospitalized during an outbreak is characterized by fear, perceived stigma, and a sense of disconnection from others and the outside world due to a lack of information. Fostering a person-centered care model could help hospitalized patients develop adaptive mechanisms that minimize the impact of isolation.

Validation of the Mexican version of the Schedule of Attitudes Toward Hastened Death in patients undergoing palliative care in Mexico.

OBJECTIVES: The Schedule of Attitudes Toward Hastened Death (SAHD) has emerged as a valid and reliable tool to assess the wish to hasten death (WTHD) among patients diagnosed with advanced cancer; however, the instrument has never been culturally adapted and validated for patients in Mexico. This study sought to validate and abbreviate the SAHD tool for use among patients attending the Palliative Care Service of the Instituto Nacional de Cancerología in Mexico. METHODS: The SAHD was culturally adapted from a previously published validation in patients from Spain. Eligible patients included Spanish literate subjects treated as outpatients in the Palliative Care Service, with an Eastern Cooperative Oncology Group (ECOG) performance status of 0-3. Patients were asked to answer the Mexican version of SAHD (SAHD-Mx) instrument and the Brief Edinburgh Depression Scale (BEDS). RESULTS: A total of 225 patients were included in the study. Median positive response in the SAHD-Mx was 2 (range 0-18). Positive correlation was identified between the SAHD-Mx scale and ECOG performance status (r = 0.188, p = 0.005), as well as BEDS (r = 0.567, p < 0.001). SAHD-Mx displayed strong internal consistency (alpha = 0.85) and adequate reliability from test-retest phone interviews (r = 0.567, p < 0.001). Using the confirmatory factor analysis model, a factor was identified and the number of items was reduced to 6, including items 4, 5, 9, 10, 13, and 18. SIGNIFICANCE OF RESULTS: The SAHD-Mx emerges as an adequate tool, with appropriate psychometric characteristics, for assessing WTHD among patients diagnosed with cancer undergoing palliative care in Mexico. .

A teaching role practicum during the COVID-19 for final year nursing students in Spain: A qualitative study.

BACKGROUND: Due to the COVID-19 pandemic, suspension of face-to-face learning and clinical placements for nursing students in Spain led us to expand and adapt clinical training to a teaching role. Final-year nursing students conducted an online clinical training focused on developing their health education competence. PURPOSE: The aim of this study was to explore the experiences of final-year nursing students who completed their clinical training in a teaching role practicum during the pandemic outbreak (March-June 2020). METHOD: A qualitative content analysis of reflective journals from eighteen final-year nursing students was conducted. FINDINGS: Three themes were revealed: 1) An array of emotions due to not being able to complete their final clinical placement and deciding not to join the nursing workforce; 2) Perceived benefits of a teaching role such as being able to help, contributing to knowledge, acquiring competence, and learning support and companionship; and 3) Recognizing the teaching role as fundamental to the nursing profession and becoming aware of the importance of scientific evidence in clinical practice. DISCUSSION: Nursing students appreciated how teaching and health education are an integral part of the nurse's role. A teaching role allowed final-year students to acquire competence in a key nursing role during the pandemic outbreak providing a good practice for nursing education.

Multidisciplinary preventive intervention for breast cancer-related lymphedema: An international consensus.

OBJECTIVE: To establish a consensus regarding the multidisciplinary prevention of breast cancer-related lymphedema (BCRL), taking into account the expert opinion of professional groups from across the world involved in the identification and treatment of breast cancers. METHODS: International consensus study involving a modified nominal group and Delphi process. A total of 50 preventive strategies representing those used by a range of health disciplines involved in breast cancer care were identified by the nominal group. These strategies were categorised into four subgroups (general recommendations, therapeutic approach, rehabilitation medicine and physiotherapy and dietary recommendations) and presented in survey format to a multidisciplinary panel of experts in a two-round Delphi process. Eleven specialist areas and 15 countries were represented on the panel. RESULTS: Twenty-seven experts responded to both Delphi rounds, and the mean overall agreement after Round 2 was 85.7%. Of the 50 proposed strategies for preventing BCRL, 48 yielded consensus among experts. CONCLUSION: We report an international consensus for the multidisciplinary prevention of BCRL, setting out recommendations aimed at systematising the care of women with breast cancer. The consensus could provide a platform for the development of standardised clinical guidelines.

Control in patients with advanced cancer: an interpretative phenomenological study.

BACKGROUND: In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare. METHODS: We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Catalan; c) outpatients diagnosed with advanced cancer; d) Eastern Cooperative Oncology Group (ECOG) between 0 and 3; e) judged by their physician or nurse to be emotionally stable; f) considered to have control over their illness and circumstances according to their responsible physician; and g) signed informed consent. RESULTS: We interviewed eight participants (ages ranged from 29 to 70 years, six were female). Two themes were identified: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, character traits underlying a need for control; sense of lack of care as a source of loss of control; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and adjusting the focus of control. The data allowed us to identify strategies that promote a sense of control in these patients. CONCLUSIONS: The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. These findings selectively reflect experiences of those who see themselves able to effect outcomes in life, suggesting future research should address how both family members and healthcare professionals can help to empower all patients.

Thinking clearly about dignity: relationships between cognitive processes underlying perceived dignity as determinants of psychological adjustment.

BACKGROUND: Public and professional views strongly equate dignity among the dying with their abilities to make decisions about medical and personal treatment and care. To make these decisions requires cognitive processes that inform our understanding of circumstances by integrating thoughts, experiences, and perceptions with prior knowledge. But patients with terminal illnesses, especially cancer, often experience problems stemming from cognitive changes and the cognitive state of uncertainty that can interfere with knowing what options for care are essential to targeting their sense of dignity. This paper aims to propose and test a model that defines targets for dignity-conserving care from underlying cognitive changes as antecedents to uncertainty that impact psychological adjustment of patients with advanced cancer. PARTICIPANTS AND PROCEDURE: This is a cross-sectional observational study using participant data from 257 patients with advanced cancer. The Patient Dignity Inventory and the Hospital Anxiety and Depression Scale were administered to patients and analyzed according to model hypotheses. RESULTS: Analyses used structural equational modeling to confirm model pathways. In the context of perceived dignity in advanced cancer, there was a direct pathway from patient reported problems with cognitive changes to uncertainty, that in turn had both direct and indirect effects on depression. CONCLUSIONS: The results suggest that cognitive changes challenge perceptions of dignity and can independently be targeted as modifiable processes to provide dignity-conserving care.

Episodic breathlessness in patients with cancer: definition, terminology, clinical features - integrative systematic review.

PURPOSE: Breatlessness flares directly impair quality of life of patients with cancer. The aim of this review was to analyse and synthesise the available information related to its terminology, definition and clinical features in patients with cancer. METHODS: Integrative systematic review according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Literature search was conducted in MEDLINE PubMed, CINAHLPlus, Web of Science, Cochrane Central Register Controlled Trials CENTRAL, Scopus and OpenAire. RESULTS: Data from 1065 patients with cancer included in 12 studies were analysed. The preferred term for breathlessness flares was episodic dyspnoea (ED). The reported frequency of ED was 20.4% (70.9% in patients reporting background dyspnoea (BD)). ED intensity was moderate to severe with short duration (<10 min) in >80% of patients. The most common trigger was exertion (>90%) followed by emotional or environmental factors. ED management consisted mainly of pharmacological and non-pharmacological measures. CONCLUSIONS: This systematic review shows that ED is common in patients with cancer, especially in those with BD. Further studies are urgently needed to better understand this condition and to develop specific therapeutic management. PROSPERO REGISTRATION NUMBER: CRD42019126708.

Breast cancer-related lymphoedema: Risk factors and prediction model.

AIMS: To identify the risk factors for lymphoedema following axillary lymph node dissection (ALND) in a European sample and to propose a lymphoedema prediction model for this population. DESIGN: Predictive retrospective cohort study comparing women who developed lymphoedema in 2 years of undergoing ALND with those who did not developed lymphoedema. METHODS: We reviewed the clinical records of 504 women who, between January 2008 and May 2018, underwent surgery for breast cancer that involved ALND. Logistic regression was used to identify significant risk factors for lymphoedema. The prediction accuracy of the model was assessed by calculating the area under the receiver operating characteristic curve. RESULTS: Of the 504 women whose records were analysed, 156 developed lymphoedema. Significant predictors identified in the regression model were level of lymph node dissection, lymph node status, post-operative complications, body mass index (BMI) and number of lymph nodes extracted. The prediction model showed good sensitivity (80%) in the study population. CONCLUSIONS: The factor contributing most to the risk of lymphoedema was the level of lymph node dissection, and the only patient-related factor in the prediction model was BMI. The model offers good predictive capacity in this population and it is a simple tool that breast care units could use to assess the risk of lymphoedema following ALND. Nurses with specialist knowledge of lymphoedema have a key role to play in ensuring that women receive holistic and individualized care. IMPACT: What problem did the study address? Secondary lymphoedema is one of the main complications in the treatment of breast cancer. What were the main findings? The prediction model included five factors associated with the risk of lymphoedema following ALND. The strongest predictor was the level of lymph node dissection, and the only patient-related factor was BMI. Where and on whom will the research have an impact? The prediction model offers breast care units a tool for assessing the risk of lymphoedema in women undergoing surgery involving ALND. The results highlight the importance of weight reduction as a preventive measure and support a more conservative surgical approach.

Nursing students on the frontline: Impact and personal and professional gains of joining the health care workforce during the COVID-19 pandemic in Spain.

BACKGROUND: Final-year nursing students in Spain augmented the health care workforce during the COVID-19 pandemic. PURPOSE: To understand the lived experience of nursing students who joined the health care workforce during the first wave of the COVID-19 outbreak (March-May 2020). METHOD: Qualitative content analysis of the reflective journals of 40 nursing students in Spain. FINDINGS: The analysis identified four main themes: 1) Willingness to help; 2) Safety and protective measures: Impact and challenges; 3) Overwhelming experience: Becoming aware of the magnitude of the epidemic; and 4) Learning and growth. DISCUSSION: The wish to help, the sense of moral duty, and the opportunity to learn buffered the impact of the students' lived experience. Despite the challenges they faced, they saw their experiences as a source of personal and professional growth, and they felt reaffirmed in their choice of career. Promoting opportunities for reflection and implementing adequate support and training strategies is crucial for building a nursing workforce that is capable of responding to future health crises.

Effectiveness of a nurse-led, face-to-face health coaching intervention in enhancing activation and secondary outcomes of primary care users with chronic conditions.

Prevalence of chronic diseases and multimorbidity is rising, and it remains unclear what the best strategy is for activating people with chronic conditions in their self-care. We designed a two-group quasi-experimental time series trial to examine the effectiveness of a nurse-led, face-to-face, individually-tailored health coaching (HC) intervention in improving patient activation and secondary outcomes (self-efficacy, quality of life, anxiety and depression symptoms, medication adherence, hospitalization and emergency visits) among primary care users with chronic conditions. A total of 118 people with chronic conditions were recruited through a primary care center and allocated to either the intervention group (IG) (n = 58) or control group (CG) (n = 60). The IG received a nurse-led individually-tailored HC intervention involving 4-6 face-to-face multicomponent sessions covering six core activation topics. The CG received usual primary care. Data were collected at baseline, after the intervention (6 weeks after baseline for controls) and at 6 and 12 months from baseline. Compared with controls, the IG had significantly higher patient activation scores after the intervention (73.29 vs. 66.51, p = .006). However, this improvement was not maintained at follow-up and there were no significant differences in secondary outcomes across the study period. HC may be an effective strategy for achieving short-term improvements in the activation of primary care users with chronic conditions. Further studies with different methodological approaches are needed to elucidate how HC may improve and sustain changes in patient activation.

What defines the comprehensive assessment of needs in palliative care? An integrative systematic review.

BACKGROUND: The comprehensive assessment of needs in palliative care identifies where patients most want attention to guide clinical decisions that tailor care provision from their first encounters. AIM: To define how and what needs are identified by the comprehensive assessment of needs in the original peer-reviewed articles in the field of palliative care. DESIGN: An integrative systematic review as outlined by Whittemore and Knafl. Quality appraisal performed using the Mixed Methods Appraisal Tool. DATA SOURCES: PubMed, CINAHL, PsycINFO, Web of Science databases searched through May 2019 and updated in July 2020. RESULTS: Forty-nine articles met inclusion criteria for original articles in English or Spanish reporting comprehensive assessment of needs of adult patients receiving palliative care. The majority (41/49) of studies were moderate to high quality. Two themes were identified: (1) How a comprehensive assessment of needs should be carried out in palliative care, which reflected a preference to develop structured tools for assessment; (2) What needs of patients should be assessed in the comprehensive assessment of needs in palliative care, which conveyed a trend to assess beyond core domains - physical, psychological, social, spiritual - with information and practical most prevalent, but with substantial variation in specifying and classifying needs into domains. CONCLUSIONS: The assessment of needs in palliative care is comprehensive but lacks consensus on the needs and domains that should be assessed by the palliative care team. Future studies should better define what needs can be standardized into the assessment to improve process of care and patient satisfaction.

Experiences and needs of nursing students during pandemic outbreaks: A systematic overview of the literature.

BACKGROUND: Recent epidemics have placed overwhelming demands on health systems, leading at times to the deployment of nursing students during the crisis. Little is known about the impact this experience has on students. Although studies have explored nursing students' knowledge about infection control, there are no specific recommendations regarding how these issues should be addressed in nurse education. PURPOSE: To conduct a comprehensive systematic overview of the literature concerning nursing students in the context of emerging infectious disease epidemics or pandemics caused by zoonotic viruses. METHODS: Systematic overview. RESULTS: Forty-eight articles were included. Five themes were identified: education; knowledge, concern about risk and preventive behaviour; willingness to work during a pandemic outbreak; experiences and emotional impact; and ethical dilemmas. CONCLUSIONS: There is a need to enhance nurse education to ensure that students have adequate education in infection prevention and control and the opportunity to develop the skills and attitudes required to provide care to infected patients during a pandemic. The outcomes of these education programmes would need to be evaluated using valid and reliable instruments so as to enable comparisons to be made to prepare future nurses to deal with new pandemics in an increasingly globalized world.

Screening for the Desire to Die in the First Palliative Care Encounter: A Proof-of-Concept Study.

Context: There is a lack of consensus about the appropriate moment to assess a potential wish to hasten death (WTHD) in patients with life-threatening illness, despite evidence of its positive appraisal among patients. Objectives: To evaluate the practical potential and acceptability of questions about the WTHD in the first palliative care (PC) clinical encounter. Design: A proof-of-concept single-arm unmasked trial. Subjects: We enrolled 30 advanced cancer patients, 16 inpatients and 14 outpatients in their first PC clinical encounter. Measurements: We assessed the WTHD using a semistructured interview guide, the Assessment of the Frequency and Extent of the Desire to Die (AFEDD) embedded in a multidimensional needs assessment carried out during the first PC encounter. Information about practical potential [patients consider the assessment (a) important and (b) helpful] and acceptability [patients (a) understand and (b) are not bothered by the questions] was obtained. Results: Thirty-two patients were approached and 30 (94%) agreed to participate. The WTHD was present in two outpatients and eight inpatients. The question to assess WTHD were well understood by 94% of patients and was considered not bothersome by 87% and quite or very helpful by 80%, regardless of whether they had WTHD. Conclusions: The results support that clinicians can integrate screening for the WTHD in usual clinical practice within a multidimensional needs assessment. Patient acceptability suggests that this as a part of patient-centered care including in the first PC clinical encounter. Further studies are needed to confirm efficacy and safety in larger and different populations.

Older Age: A Protective Factor Against Perceived Dignity-Related Distress in Patients With Advanced Cancer?

CONTEXT: Most older adults will face threats to loss of health and social support, which can affect their perceived dignity. Although problems with perceived dignity increase in the context of cancer, the specific experience for those older compared with younger patients with advanced cancer has not been described despite its contributions to the wish to hasten death (WTHD). OBJECTIVES: To understand the influence of age group to the perception of dignity, considering changes in quality of life and the WTHD in patients with advanced cancer. METHODS: The Patient Dignity Inventory was administered to 194 patients with advanced cancer. The data were analyzed by separating the sample into age groups younger than 65 years (N = 106) or 65 years and older (N = 88). Linear regression models were adjusted with the explanatory variables of WTHD, quality of life, as well as functional status, physical dependence, depression, anxiety, and sociodemographic variables. RESULTS: Older patients showed a 2.6% decrease in the total scores of perceived dignity-related distress compared to younger patients. CONCLUSION: Older age could be a protective factor against the perception of loss of dignity in patients with advanced cancer, a more positive perspective of the aging experience.