Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research.

PURPOSE: The quality of life (QOL) experiences of children and adolescents living with advanced cancer have been under-explored. Enhancing QOL for this population is a dominant goal of their healthcare yet, there has been little research identifying aspects that impact their QOL. The purpose of this meta-synthesis was to identify themes of QOL informed from the voices of children and adolescents living with advanced cancer. METHODS: This meta-synthesis utilized meta-ethnography to synthesize data from individual studies in order to develop new conceptual understanding of what is important to children and adolescents about their lives when living with advanced cancer. RESULTS: Our analysis identified themes of QOL relevant to children and adolescents with advanced cancer: (1) feeling supported and wanting to support others; (2) re-establishing normal; (3) suffering and emotional distress; (4) new perspectives; (5) maintaining autonomy; and (6) awareness of time. These themes differed from more traditional dimensions of QOL often applied to children and adolescents with cancer. CONCLUSION: This research is novel as its developed themes originated from the direct voices and expressed perspectives of children and adolescents living with advanced cancer. This is a significant initial step toward both understanding QOL in this specific context and the measurement of QOL for this population.

How children and adolescents understand the quality of their lives while living with advanced cancer that is difficult to cure is largely unknown and has not been extensively studied. A significant number of children and adolescents will live with advanced cancer however, it is not well-understood how children and adolescents define their quality of life (QOL) and which aspects of their lives feel meaningful to them while living with advanced cancer. This is important as their understanding and perspectives of their QOL might be very different from what their parents and healthcare professionals caring for them might identify as meaningful to their QOL. This research used the voices of children and adolescents with advanced cancer that were included in diverse research studies examining children and adolescents' experiences living with advanced cancer to develop themes of QOL for this group of young people. It was important to focus on their voices as we wanted to know directly from children and adolescents living with advanced cancer what feels meaningful and relevant to their lives. Our research identified aspects of QOL important to children and adolescents with advanced cancer that are different from how QOL is traditionally understood for children and adolescents with cancer. These findings can contribute to enhancing the healthcare of children and adolescents living with advanced cancer by suggesting that children and adolescents with advanced cancer have distinct QOL experiences and needs.

"Walk me through the final day": A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day.

BACKGROUND: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. AIM: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. DESIGN: Qualitative, thematic analysis, research using semi-structured interviews. SETTING/PARTICIPANTS: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. RESULTS: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. CONCLUSIONS: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.

A Race to the End: Family Caregivers' Experience of Medical Assistance in Dying (MAiD)-a Qualitative Study.

BACKGROUND: The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention. OBJECTIVE: The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14. DESIGN: Caregiver experience was examined based on qualitative, semi-structured interviews. PARTICIPANTS: A total of 22 caregivers of patients who had requested MAiD were interviewed. APPROACH: Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology. KEY RESULTS: The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles. CONCLUSIONS: The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.

Testing terror management theory in advanced cancer.

Death anxiety is common in advanced cancer due to heightened mortality salience. We tested terror management theory (TMT) in this population (N = 305) by evaluating the buffering effect of the distal defenses (attachment security, meaning, self-esteem) on the impact of physical impairment (a proxy for mortality salience) on death anxiety. Patients with greater numbers of strong distal defenses reported lower death anxiety than those with no strong defenses or one strong defense. These findings support the relevance of TMT in individuals facing the actual threat of death and the need for further TMT research in such populations.

The impact of attachment security on death preparation in advanced cancer: The role of couple communication.

OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial. METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, 3 months, and 6 months). RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06 to -.10). Anxiety × Gender effects on baseline couple communication (P's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication × Gender × Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men. CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.

Demoralization and death anxiety in advanced cancer.

OBJECTIVE: The circumstances of advanced cancer can cause considerable psychological distress, including death anxiety and demoralization. Although these states of existential distress have a negative impact on the quality of life of patients with advanced cancer, they are rarely evaluated as outcomes or targets of interventions in this population. In an effort to improve understanding of existential distress, a structural model of relationships among death anxiety, demoralization, symptom burden, and social relatedness was tested in patients with advanced cancer. METHODS: A total of 307 patients with advanced cancer completed baseline measures including the Death and Dying Distress Scale, the Demoralization Scale, the modified Experiences in Close Relationships Scale, the Life Completion subscale of the Quality of Life Evaluation-Cancer scale, the Memorial Symptom Assessment Scale, and Karnofsky Performance Status. A structural equation model of protective and risk factors for demoralization and death anxiety was tested. RESULTS: The final model had good fit (SRMR = 0.061; RMSEA = 0.077; CFI = 0.927; NNFI = 0.902) in which death anxiety was positively associated with demoralization (ß = 0.71), and demoralization was positively associated with symptom burden (ß = 0.31) and negatively associated with social relatedness (ß = -0.74). CONCLUSIONS: The findings of this study suggest that demoralization and death anxiety are closely linked in patients with advanced cancer. The contribution of both symptom burden and low social relatedness to demoralization suggests that an integrated intervention addressing both physical and psychosocial disease factors may be most effective at alleviating such states of existential distress.

Prevalence of preoperative depression and adverse outcomes in older patients undergoing elective surgery: A systematic review and meta-analysis.

STUDY OBJECTIVE: Depression is a common cause of long-lasting disability and preoperative mental health state that has important implications for optimizing recovery in the perioperative period. In older elective surgical patients, the prevalence of preoperative depression and associated adverse pre- and postoperative outcomes are unknown. This systematic review and meta-analysis aimed to determine the prevalence of preoperative depression and the associated adverse outcomes in the older surgical population. DESIGN: Systematic review and meta-analysis. SETTING: MEDLINE, MEDLINE Epub Ahead of Print and In-Process, In-Data-Review & Other Non-Indexed Citations, Embase/Embase Classic, Cochrane CENTRAL, and Cochrane Database of Systematic Reviews, ClinicalTrials.Gov, the WHO ICTRP (International Clinical Trials Registry Platform) for relevant articles from 2000 to present. PATIENTS: Patients aged ≥65 years old undergoing non-cardiac elective surgery with preoperative depression assessed by tools validated in older adults. These validated tools include the Geriatric Depression Scale (GDS), Hospital Depression and Anxiety Scale (HADS), Beck Depression Inventory-II (BDI), Patient Health Questionnaire-9 (PHQ-9), and the Centre for Epidemiological Studies Depression Scale (CESD). INTERVENTIONS: Preoperative assessment. MEASUREMENT: The primary outcome was the prevalence of preoperative depression. Additional outcomes included preoperative cognitive impairment, and postoperative outcomes such as delirium, functional decline, discharge disposition, readmission, length of stay, and postoperative complications. MAIN RESULTS: Thirteen studies (n = 2824) were included. Preoperative depression was most assessed using the Geriatric Depression Scale-15 (GDS-15) (n = 12). The overall prevalence of preoperative depression was 23% (95% CI: 15%, 30%). Within non-cancer non-cardiac mixed surgery, the pooled prevalence was 19% (95% CI: 11%, 27%). The prevalence in orthopedic surgery was 17% (95% CI: 9%, 24%). In spine surgery, the prevalence was higher at 46% (95% CI: 28%, 64%). Meta-analysis showed that preoperative depression was associated with a two-fold increased risk of postoperative delirium than those without depression (32% vs 23%, OR: 2.25; 95% CI: 1.67, 3.03; I2: 0%; P ≤0.00001). CONCLUSIONS: The overall prevalence of older surgical patients who suffered from depression was 23%. Preoperative depression was associated with a two-fold higher risk of postoperative delirium. Further work is needed to determine the need for depression screening and treatment preoperatively.

Incidence of preoperative instrumental activities of daily living (IADL) dependence and adverse outcomes in older surgical patients: A systematic review and meta-analysis.

STUDY OBJECTIVE: Instrumental activities of daily living (IADLs) are essential to patient function and quality of life after surgery. In older surgical patients, the incidence of preoperative IADL dependence has not been well characterized in the literature. This systematic review and meta-analysis aimed to determine the pooled incidence of preoperative IADL dependence and the associated adverse outcomes in the older surgical population. DESIGN: Systematic review and meta-analysis. SETTING: MEDLINE, MEDLINE Epub Ahead of Print and In-Process, In-Data-Review & Other Non-Indexed Citations, Embase/Embase Classic, Cochrane CENTRAL, and Cochrane Database of Systematic Reviews, ClinicalTrials.Gov, the WHO ICTRP (International Clinical Trials Registry Platform) were searched for relevant articles from 1969 to April 2022. PATIENTS: Patients aged ≥60 years old undergoing surgery with preoperative IADL assessed by the Lawton IADL Scale. INTERVENTIONS: Preoperative assessment. MEASUREMENT: The primary outcome was the pooled incidence of preoperative IADL dependency. Additional outcomes included post-operative mortality, postoperative delirium [POD], functional status improvement, and discharge disposition. MAIN RESULTS: Twenty-one studies (n = 5690) were included. In non-cardiac surgeries, the pooled incidence of preoperative IADL dependence was 37% (95% CI: 26.0%, 48.0%) among 2909 patients. Within cardiac surgeries, the pooled incidence of preoperative IADL dependence was 53% (95% CI: 24.0%, 82.0%) among 1074 patients. Preoperative IADL dependence was associated with an increased risk of postoperative delirium than those without IADL dependence (44.9% vs 24.4, OR 2.26; 95% CI: 1.42, 3.59; I2: 0%; P = 0.0005). CONCLUSIONS: There is a high incidence of IADL dependence in older surgical patients undergoing non-cardiac and cardiac surgery. Preoperative IADL dependence was associated with a two-fold risk of postoperative delirium. Further work is needed to determine the feasibility of using the IADL scale preoperatively as a predictive tool for postoperative adverse outcomes.

Protocol for the development and multisite validation of the Quality of Dying and Death-Revised Global Version scale.

INTRODUCTION: Evaluating the quality of dying and death is essential to ensure high-quality end-of-life care. The Quality of Dying and Death (QODD) scale is the best-validated measure of the construct, but many items are not relevant to participants, particularly in low-resource settings. The aim of this multisite cross-sectional study is to develop and validate the QODD-Revised Global Version (QODD-RGV), to enhance ease of completion and relevance in higher-resource and lower-resource settings. METHODS AND ANALYSIS: This study will be a two-arm, multisite evaluation of the cultural relevance, reliability and validity of the QODD-RGV across four participating North American hospices and a palliative care site in Malawi, Africa. Bereaved caregivers and healthcare providers of patients who died at a participating North American hospice and bereaved caregivers of patients who died of cancer at the Malawian palliative care site will complete the QODD-RGV and validation measures. Cognitive interviews with subsets of North American and Malawian caregivers will assess the perceived relevance of the scale items. Psychometric evaluations will include internal consistency and convergent and concurrent validity. ETHICS AND DISSEMINATION: The North American arm received approval from the University Health Network Research Ethics Board (21-5143) and the University of North Carolina Institutional Review Board (21-1172). Ethics approval for the Malawi arm is being obtained from the University of North Carolina Institutional Review Board and the Malawian National Health Science Research Committee. Study findings will be disseminated through publication in peer-reviewed journals and conference presentations.

Impact of medical assistance in dying (MAiD) on family caregivers.

Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.

Psychological Interventions for Patients With Advanced Disease: Implications for Oncology and Palliative Care.

A growing body of research demonstrates the feasibility and efficacy of psychological interventions for adult patients with advanced cancer. Findings from quantitative studies of psychotherapeutic interventions with primary psychological outcomes for such patients are reviewed here and recommendations for best practice are made. We consider these interventions according to three broad phases in which they are most commonly applied: soon after diagnosis of advanced cancer, when living with the disease, and at or near the end of life. Cumulative evidence from well-designed studies demonstrates the efficacy of psychosocial interventions for patients with advanced disease to relieve and prevent depression, anxiety, and distress related to dying and death, as well as to enhance the sense of meaning and preparation for end of life. Individual and couple-based interventions have been proven to be most feasible, and the development and use of tailored and validated measures has enhanced the rigor of research and clinical care. Palliative care nurses and physicians can be trained to deliver many such interventions, but a core of psychosocial clinicians, including social workers, psychologists, and psychiatrists, is usually required to train other health professionals in their delivery and to ensure their quality. Few of the interventions for which there is evidence of effectiveness have been routinely incorporated into oncology or palliative care. Advocacy on the basis of this evidence is required to build psychosocial resources in cancer treatment settings and to ensure that psychological care receives the same priority as other aspects of palliative care in oncology.

Death talk and relief of death-related distress in patients with advanced cancer.

OBJECTIVES: The circumstances of advanced cancer heighten the need for affected individuals to communicate mortality-related concerns, although there may be obstacles to such communication. Managing Cancer and Living Meaningfully(CALM) is a supportive-expressive therapy designed to address such barriers and to facilitate communication of mortality-related concerns in patients and caregivers facing advanced disease. This study explores death-related distress in patients with advanced cancer and the perceived influence of CALM therapy on overcoming barriers to communication of this distress. METHODS: Semistructured interviews were conducted with a subset of patients with advanced cancer (n=17) participating in a CALM phase III trial at a large urban regional cancer centre. Interviews were transcribed, and qualitative data were analysed using thematic analysis. RESULTS: Death-related distress was experienced in terms of three key themes: diffuse and overwhelming fear, fear of uncertainty and fear of suffering. The perceived barriers to communicating such distress were as follows: reluctance of loved ones to discuss mortality-related issues and the participants´ own reluctance to discuss death-related concerns to protect their loved ones or themselves from distress. CALM therapists were perceived to facilitate discussions on dying and death in sessions and to support patients´ communication of death-related distress with healthcare providers and loved ones. CONCLUSIONS: Patients with advanced cancer perceive barriers to effective communication of death distress to be related to their own reluctance, as well as reluctance of their loved ones to address such fears. CALM therapy may help patients with advanced cancer to overcome obstacles to communication and to alleviate death-related distress. TRIAL REGISTRATION NUMBER: NCT01506492.

Managing Cancer and Living Meaningfully (CALM): A Randomized Controlled Trial of a Psychological Intervention for Patients With Advanced Cancer.

Purpose Individuals with advanced cancer experience substantial distress in response to disease burden and impending mortality. Managing Cancer And Living Meaningfully (CALM) is a novel, brief, manualized psychotherapeutic intervention intended to treat and prevent depression and end-of-life distress in patients with advanced cancer. We conducted a randomized controlled trial to compare CALM with usual care (UC) in this population. Methods Patients with advanced cancer were recruited from outpatient oncology clinics at a comprehensive cancer center into an unblinded randomized controlled trial. Permuted block randomization stratified by Patient Health Questionnaire-9 depression score allocated participants to CALM plus UC or to UC alone. Assessments of depressive symptoms (primary outcome), death-related distress, and other secondary outcomes were conducted at baseline, 3 months (primary end point), and 6 months (trial end point). Analyses were by intention to treat. Analysis of covariance was used to test for outcome differences between groups at follow-up, controlling for baseline. Mixed-model results are reported. Results Participants (n = 305) were recruited between February 3, 2012, and March 4, 2016, and randomly assigned to CALM (n = 151) or UC (n = 154). CALM participants reported less-severe depressive symptoms than UC participants at 3 months (Δ = 1.09; P = .04; Cohen's d = 0.23; 95% CI, 0.04 to 2.13) and at 6 months (Δ = 1.29; P = .02; d = 0.29; 95% CI, 0.24 to 2.35). Significant findings for greater end-of-life preparation at 6 months also favored CALM versus UC. No adverse effects were identified. Conclusion Findings suggest that CALM is an effective intervention that provides a systematic approach to alleviating depressive symptoms in patients with advanced cancer and addresses the predictable challenges these patients face.