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.

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. .

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.

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.

Non-coding recurrent mutations in chronic lymphocytic leukaemia.

Chronic lymphocytic leukaemia (CLL) is a frequent disease in which the genetic alterations determining the clinicobiological behaviour are not fully understood. Here we describe a comprehensive evaluation of the genomic landscape of 452 CLL cases and 54 patients with monoclonal B-lymphocytosis, a precursor disorder. We extend the number of CLL driver alterations, including changes in ZNF292, ZMYM3, ARID1A and PTPN11. We also identify novel recurrent mutations in non-coding regions, including the 3' region of NOTCH1, which cause aberrant splicing events, increase NOTCH1 activity and result in a more aggressive disease. In addition, mutations in an enhancer located on chromosome 9p13 result in reduced expression of the B-cell-specific transcription factor PAX5. The accumulative number of driver alterations (0 to ≥4) discriminated between patients with differences in clinical behaviour. This study provides an integrated portrait of the CLL genomic landscape, identifies new recurrent driver mutations of the disease, and suggests clinical interventions that may improve the management of this neoplasia.

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.

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.

A gene signature that distinguishes conventional and leukemic nonnodal mantle cell lymphoma helps predict outcome.

Mantle cell lymphoma (MCL) is an aggressive B-cell malignancy, but some patients have a very indolent evolution. This heterogeneous course is related, in part, to the different biological characteristics of conventional MCL (cMCL) and the distinct subgroup of leukemic nonnodal MCL (nnMCL). Robust criteria to distinguish these MCL subtypes and additional biological parameters that influence their evolution are not well defined. We describe a novel molecular assay that reliably distinguishes cMCL and nnMCL using blood samples. We trained a 16-gene assay (L-MCL16 assay) on the NanoString platform using 19 purified leukemic samples. The locked assay was applied to an independent cohort of 70 MCL patients with leukemic presentation. The assay assigned 37% of cases to nnMCL and 56% to cMCL. nnMCL and cMCL differed in nodal presentation, lactate dehydrogenase, immunoglobulin heavy chain gene mutational status, management options, genomic complexity, and CDKN2A/ATM deletions, but the proportion with 17p/TP53 aberrations was similar in both subgroups. Sequential samples showed that assay prediction was stable over time. nnMCL had a better overall survival (OS) than cMCL (3-year OS 92% vs 69%; P = .006) from the time of diagnosis and longer time to first treatment. Genomic complexity and TP53/CDKN2A aberrations predicted for shorter OS in the entire series and cMCL, whereas only genomic complexity was associated with shorter time to first treatment and OS in nnMCL. In conclusion, the newly developed assay robustly recognizes the 2 molecular subtypes of MCL in leukemic samples. Its combination with genetic alterations improves the prognostic evaluation and may provide useful biological information for management decisions.

Health-related quality of life in patients with advanced cancer who express a wish to hasten death: A comparative study.

BACKGROUND: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life. AIM: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics. DESIGN: A comparative cross-sectional study. PARTICIPANTS: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores ⩾1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale. RESULTS: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052). CONCLUSION: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.

The experiences and needs of primary family caregivers of patients with multiple myeloma: A qualitative analysis.

BACKGROUND: Family caregivers play a key role in the lives of patients with multiple myeloma. However, very little is known about the impact that the disease (its diagnosis, course and prognosis) has on the main family caregiver. AIM: To achieve a deeper understanding of the lived experience of individuals who are the primary caregiver of a relative with multiple myeloma and to shed light on their needs. DESIGN: Interpretative phenomenological study. SETTING AND PARTICIPANTS: A total of 12 individuals who were the main family caregivers of a relative with multiple myeloma who was under outpatient follow-up at a cancer unit in Barcelona were recruited via purposive sampling until data saturation was reached. In semi-structured in-depth interviews, participants described their experiences of caring for their relative with multiple myeloma. Interviews were recorded, transcribed and analysed using ATLAS.ti v7.2. The seven steps proposed by Colaizzi were used for data analysis, and the relationships among emerging themes were examined. FINDINGS: Four main themes emerged: (a) a new life, adapting to the disease, (b) commitment to the patient, (c) the emotional sphere and (d) experiences in relation to the care and support received. The analysis also revealed a core overarching theme: uncertainty. CONCLUSION: Primary family caregivers experienced intense uncertainty, and they described a strong need to air their feelings. Specific practical initiatives, targeting both health-related and logistical aspects of care, need to be developed in order to support family caregivers of myeloma patients.

The clinical evaluation of the wish to hasten death is not upsetting for advanced cancer patients: A cross-sectional study.

BACKGROUND: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress. AIM: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death. DESIGN: Descriptive, cross-sectional study. SETTING/PARTICIPANTS: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment's importance. RESULTS: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it. CONCLUSIONS: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.

Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review.

Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.

Clinical impact of clonal and subclonal TP53, SF3B1, BIRC3, NOTCH1, and ATM mutations in chronic lymphocytic leukemia.

Genomic studies have revealed the complex clonal heterogeneity of chronic lymphocytic leukemia (CLL). The acquisition and selection of genomic aberrations may be critical to understanding the progression of this disease. In this study, we have extensively characterized the mutational status of TP53, SF3B1, BIRC3, NOTCH1, and ATM in 406 untreated CLL cases by ultra-deep next-generation sequencing, which detected subclonal mutations down to 0.3% allele frequency. Clonal dynamics were examined in longitudinal samples of 48 CLL patients. We identified a high proportion of subclonal mutations, isolated or associated with clonal aberrations. TP53 mutations were present in 10.6% of patients (6.4% clonal, 4.2% subclonal), ATM mutations in 11.1% (7.8% clonal, 1.3% subclonal, 2% germ line mutations considered pathogenic), SF3B1 mutations in 12.6% (7.4% clonal, 5.2% subclonal), NOTCH1 mutations in 21.8% (14.2% clonal, 7.6% subclonal), and BIRC3 mutations in 4.2% (2% clonal, 2.2% subclonal). ATM mutations, clonal SF3B1, and both clonal and subclonal NOTCH1 mutations predicted for shorter time to first treatment irrespective of the immunoglobulin heavy-chain variable-region gene (IGHV) mutational status. Clonal and subclonal TP53 and clonal NOTCH1 mutations predicted for shorter overall survival together with the IGHV mutational status. Clonal evolution in longitudinal samples mainly occurred in cases with mutations in the initial samples and was observed not only after chemotherapy but also in untreated patients. These findings suggest that the characterization of the subclonal architecture and its dynamics in the evolution of the disease may be relevant for the management of CLL patients.

The role of perceived dignity and control in the wish to hasten death among advanced cancer patients: A mediation model.

OBJECTIVE: The objective of the study is to test a model in which perceived loss of dignity and control are proposed, along with symptoms of depression and functional impairment, as risk factors for the wish to hasten death (WTHD) in advanced cancer patients. METHODS: This was a cross-sectional study of 193 patients in an oncology unit. Outcome measures included perceived control, performance status, symptoms of depression, perceived dignity, and the WTHD. Structural equation modeling was performed. RESULTS: Structural equation modeling showed that perceived loss of control (-0.402) and functional impairment (-0.21) were risk factors for perceived loss of dignity. Loss of control (-0.385) and functional impairment (-0.283) were also risk factors for symptoms of depression. Perceived loss of dignity and symptoms of depression were the most proximal determinants of the WTHD, on which they had a direct, positive, and significant effect (0.246 and 0.209, respectively). Therefore, both symptoms of depression and perceived loss of dignity independently predicted the WTHD and mediated the effects of perceived loss of control and functional impairment on this wish. CONCLUSIONS: The hypothesized model provides evidence for the impact of the four aforementioned factors on the WTHD. Our results suggest that personalized care plans which are able to enhance the sense of dignity and control among advanced cancer patients could help to reduce the likelihood or intensity of a WTHD.

Assessment of the wish to hasten death in patients with advanced cancer: A comparison of 2 different approaches.

INTRODUCTION: The Desire for Death Rating Scale (DDRS) and the short form of the Schedule of Attitudes toward Hastened Death (SAHD-5) are different approaches to assessing the wish to hasten death (WTHD). Both have clinical threshold scores for identifying individuals with a meaningfully elevated WTHD. However, the agreement between the 2 measures and patient opinions about assessment of the WTHD are unknown. OBJECTIVES: To compare the DDRS and SAHD-5 and to analyze patient opinions about assessment of the WTHD. METHODS: The WTHD was assessed in 107 patients with advanced cancer using both the DDRS and SAHD-5. Patients were subsequently asked their opinion about this assessment. RESULTS: Correlation between scores on the SAHD-5 and the DDRS was moderate, Spearman rho = 0.67 (P < .01). The SAHD-5 identified 13 patients (12.1%) at risk of the WTHD, and the DDRS identified 6 patients (5.6%) with a moderate-high WTHD (P > .05). Concordance between the DDRS and SAHD-5 in identifying individuals with an elevated WTHD was poor when using recommended cut-off scores, κ = 0.37 (P < 0.01) but could be improved by using different thresholds. Only 4 patients (3.8%) regarded the assessment questions as bothersome, and 90.6% considered it important that health-care professionals inquire about the WTHD. CONCLUSIONS: The SAHD-5 and DDRS appear to be appropriate methods for assessing the WTHD and could provide complementary information in clinical practice: the SAHD-5 to screen for risk of the WTHD and the DDRS as a clinical interview to explore it in greater detail. Assessment of the WTHD is well accepted by palliative care cancer patients.

Palliative care in patients with haematological neoplasms: An integrative systematic review.

BACKGROUND: Palliative care was originally intended for patients with non-haematological neoplasms and relatively few studies have assessed palliative care in patients with haematological malignancies. AIM: To assess palliative care interventions in managing haematological malignancies patients treated by onco-haematology departments. DESIGN: Integrative systematic review with data extraction and narrative synthesis (PROSPERO #: CRD42016036240). DATA SOURCES: PubMed, CINAHL, Cochrane, Scopus and Web-of-Science were searched for articles published through 30 June 2015. Study inclusion criteria were as follows: (1) published in English or Spanish and (2) containing data on palliative care interventions in adults with haematological malignancies. RESULTS: The search yielded 418 articles; 99 met the inclusion criteria. Six themes were identified: (1) end-of-life care, (2) the relationship between onco-haematology and palliative care departments and referral characteristics, (3) clinical characteristics, (4) experience of patients/families, (5) home care and (6) other themes grouped together as 'miscellany'. Our findings indicate that palliative care is often limited to the end-of-life phase, with late referral to palliative care. The symptom burden in haematological malignancies patients is more than the burden in non-haematological neoplasms patients. Patients and families are generally satisfied with palliative care. Home care is seldom used. Tools to predict survival in this patient population are lacking. CONCLUSION: Despite a growing interest in palliative care for haematological malignancies patients, the evidence base needs to be strengthened to expand our knowledge about palliative care in this patient group. The results of this review support the need to develop closer cooperation and communication between the palliative care and onco-haematology departments to improve patient care.