The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital.

BACKGROUND: The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualitative study aimed to understand how the pandemic impacted the MAiD experience in hospital of persons requesting MAiD (patients) and their loved ones (caregivers) in Canada. METHODS: Semi-structured interviews were conducted with patients who requested MAiD and their caregivers between April 2020 and May 2021. Participants were recruited during the first year of the pandemic from the University Health Network and Sunnybrook Health Sciences Centre in Toronto, Canada. Patients and caregivers were interviewed about their experience following the MAiD request. Six months following patient death, bereaved caregivers were interviewed to explore their bereavement experience. Interviews were audio-recorded, transcribed verbatim, and de-identified. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Interviews were conducted with 7 patients (mean [SD] age, 73 [12] years; 5 [63%] women) and 23 caregivers (mean [SD] age, 59 [11] years; 14 [61%] women). Fourteen caregivers were interviewed at the time of MAiD request and 13 bereaved caregivers were interviewed post-MAiD. Four themes were generated with respect to the impact of COVID-19 and its containment measures on the MAiD experience in hospital: (1) accelerating the MAiD decision; (2) compromising family understanding and coping; (3) disrupting MAiD delivery; and (4) appreciating rule flexibility. CONCLUSIONS: Findings highlight the tension between respecting pandemic restrictions and prioritizing control over the dying circumstances central to MAiD, and the resulting impact on patient and family suffering. There is a need for healthcare institutions to recognize the relational dimensions of the MAiD experience, particularly in the isolating context of the pandemic. Findings may inform strategies to better support those requesting MAiD and their families during the pandemic and beyond.

The impact of coronavirus disease 2019 on medical assistance in dying.

PURPOSE OF REVIEW: The COVID-19 pandemic and measures to contain its impact are drastically altering end-of-life and grief experiences around the world, including the practice and experience of medical assistance in dying (MAiD). RECENT FINDINGS: Recent published literature on the impact of COVID-19 on MAiD can be described under the following categories: studies investigating the impact of COVID-19 on MAiD from the healthcare providers' perspective; studies investigating the impact of COVID-19 on MAiD from the patient/family perspective; and opinion papers that review the impact of COVID-19 on MAiD from a legal-ethical perspective. Most of these studies were either conducted in Canada or included mostly Canadian participants. SUMMARY: Recent published research on the impact of COVID-19 on MAiD highlights the tensions between COVID-19 restrictions and individual control over the circumstances of dying, and the resulting impact on patient and family suffering and on moral injury for their MAiD providers. These reports may help inform risk mitigation strategies for the current pandemic and future similar public health crises that acknowledge the value of humane, family-centered care at the end of life.

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.

A cross-sectional gender-sensitive analysis of depressive symptoms in patients with advanced cancer.

BACKGROUND: Patients with advanced cancer commonly report depressive symptoms. Examinations of gender differences in depressive symptoms in patients with advanced cancer have yielded inconsistent findings. AIM: The objective of this study was to investigate whether the severity and correlates of depressive symptoms differ by gender in patients with advanced cancer. DESIGN: Participants completed measures assessing sociodemographic and medical characteristics, disease burden, and psychosocial factors. Depressive symptoms were examined using the Patient Health Questionnaire, and other measures included physical functioning, symptom burden, general anxiety, death related distress, and dimensions of demoralization. A cross-sectional analysis examined the univariate and multivariate relationships between gender and depressive symptoms, while controlling for important covariates in multivariate analyses. SETTING/PARTICIPANTS: Patients with advanced cancer (N = 305, 40% males and 60% females) were recruited for a psychotherapy trial from outpatient oncology clinics at a comprehensive cancer center in Canada. RESULTS: Severity of depressive symptoms was similar for males (M = 7.09, SD = 4.59) and females (M = 7.66, SD = 5.01), t(303) = 1.01, p = 0.314. Greater general anxiety and number of cancer symptoms were associated with depressive symptoms in both males and females. Feeling like a failure (ß = 0.192), less death anxiety (ß = -0.188), severity of cancer symptoms (ß = 0.166), and older age (ß = 0.161) were associated with depressive symptoms only in males, while disheartenment (ß = 0.216) and worse physical functioning (ß = 0.275), were associated with depressive symptoms only in females. CONCLUSIONS: Males and females report similar levels of depressive symptoms but the pathways to depression may differ by gender. These differences suggest the potential for gender-based preventive and therapeutic interventions in this population.

Managing Cancer And Living Meaningfully (CALM): randomised feasibility trial in patients with advanced cancer.

BACKGROUND: Managing Cancer And Living Meaningfully (CALM) is a brief individual psychotherapy for patients with advanced cancer. In an intervention-only phase 2a trial, CALM showed promising results, leading to the present 2b pilot, which introduces procedures for randomisation and improved rigour in preparation for a phase 3 randomised controlled trial (RCT). AIMS: To test trial methodology and assess feasibility of a confirmatory RCT. DESIGN: A parallel-arm RCT (intervention vs usual care) with 3 and 6-month follow-ups. Assessment of feasibility included rates of consent, randomisation, attrition, intervention non-compliance and usual care contamination. PRIMARY OUTCOME: depressive symptoms (Patient Health Questionnaire-9; PHQ-9). SECONDARY OUTCOMES: major depressive disorder (MDD), generalised anxiety, death anxiety, spiritual well-being, attachment anxiety and avoidance, self-esteem, experiential avoidance, quality of life and post-traumatic growth. Bayesian conjugate analysis was used in this low-powered setting. SETTING/PARTICIPANTS: 60 adult patients with advanced cancer from the Princess Margaret Cancer Centre. RESULTS: Rate of consent was 32%, randomisation 78%, attrition 25%, non-compliance 37% and contamination 17%. There was support for potential treatment effects on: PHQ-9, OR=1.48, 95% Credible Interval (CRI.95) (0.65, 3.38); MDD, OR=1.56, CRI.95 (0.50, 4.84); attachment anxiety, OR=1.72, CRI.95 (0.73, 4.03); and attachment avoidance, OR=1.58, CRI.95 (0.67, 3.71). There was no support for effects on the seven remaining secondary outcomes. CONCLUSIONS: A phase 3 CALM RCT is feasible and should aim to detect effect sizes of d=0.40, with greater attention to issues of compliance and contamination. TRIAL REGISTRATION NUMBER: NCT02353546.

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.

Choosing between responsive-design websites versus mobile apps for your mobile behavioral intervention: presenting four case studies.

Both mobile apps and responsive-design websites (web apps) can be used to deliver mobile health (mHealth) interventions, but it can be difficult to discern which to use in research. The goal of this paper is to present four case studies from behavioral interventions that developed either a mobile app or a web app for research and present an information table to help researchers determine which mobile option would work best for them. Four behavioral intervention case studies (two developed a mobile app, and two developed a web app) presented include time, cost, and expertise. Considerations for adopting a mobile app or a web app-such as time, cost, access to programmers, data collection, security needs, and intervention components- are presented. Future studies will likely integrate both mobile app and web app modalities. The considerations presented here can help guide researchers on which platforms to choose prior to starting an mHealth intervention.

Managing Cancer And Living Meaningfully: study protocol for a randomized controlled trial.

BACKGROUND: We have developed a novel and brief semi-structured psychotherapeutic intervention for patients with advanced or metastatic cancer, called Managing Cancer And Living Meaningfully. We describe here the methodology of a randomized controlled trial to test the efficacy of this treatment to alleviate distress and promote well-being in this population. METHODS/DESIGN: The study is an unblinded randomized controlled trial with 2 conditions (intervention plus usual care versus usual care alone) and assessments at baseline, 3 and 6 months. The site is the Princess Margaret Cancer Centre, part of the University Health Network, in Toronto, Canada. Eligibility criteria include: ≥ 18 years of age; English fluency; no cognitive impairment; and diagnosis of advanced cancer. The 3-6 session intervention is manualized and allows for flexibility to meet individual patients' needs. It is delivered over a 3-6 month period and provides reflective space for patients (and their primary caregivers) to address 4 main domains: symptom management and communication with health care providers; changes in self and relations with close others; sense of meaning and purpose; and the future and mortality. Usual care at the Princess Margaret Cancer Centre includes distress screening and referral as required to in-hospital psychosocial and palliative care services. The primary outcome is frequency of depressive symptoms and the primary endpoint is at 3 months. Secondary outcomes include diagnosis of major or minor depression, generalized anxiety, death anxiety, spiritual well-being, quality of life, demoralization, attachment security, posttraumatic growth, communication with partners, and satisfaction with clinical interactions. DISCUSSION: Managing Cancer And Living Meaningfully has the potential to relieve distress and promote psychological well-being in patients with advanced cancer and their primary caregivers. This trial is being conducted to determine its benefit and inform its dissemination. The intervention has cross-national relevance and training workshops have been held thus far with clinicians from North and South America, Europe, the Middle East, Asia and Africa. TRIAL REGISTRATION: ClinicalTrials.gov NCT01506492 4 January 2012.

Initial validation of the Death and Dying Distress Scale for the assessment of death anxiety in patients with advanced cancer.

CONTEXT: The experience of death anxiety in patients with advanced cancer has been understudied partly because of the lack of a tailored measure for this population. The Death and Dying Distress Scale (DADDS) was constructed to address this gap. Although an initial version of this instrument has shown promising psychometric properties, validation of the finalized version is needed. OBJECTIVES: This study aims to validate the recent 15-item DADDS by examining its factor structure and construct validity. METHODS: Sixty participants with advanced or metastatic cancer were recruited from the Princess Margaret Cancer Centre, University Health Network, Toronto, Canada, into a pilot trial of a psychological intervention. This article analyzes the baseline measures on death anxiety, depressive symptoms (Patient Health Questionnaire-9, Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision, Axis 1 Disorders), generalized anxiety (Generalized Anxiety Disorder-7), and preparation for end of life (Quality of Life at the End of Life-Cancer Scale). Exploratory factor analysis was conducted. Construct validity was assessed by correlations between measures. RESULTS: Factor analysis revealed a dominant single factor explaining more than 75% of the shared variation between items. Factor loadings were high, ranging from 0.57 to 0.86. Item communalities were evenly ranged from 0.33 to 0.75 and with the 15:1 variable to factor ratio, suggest the viability of parameter estimates despite the small sample size. Cronbach's alpha was 0.95. Death anxiety was associated with less preparation for end of life (r = -0.68, P < 0.0001), more generalized anxiety (r = 0.63, P < 0.0001), and more depressive symptom severity (r = 0.50, P < 0.0001). Individuals with major depression had greater death anxiety than the nondepressed (mean difference = 17; 95% CI = 1.5-33), as did individuals with minor depression (mean difference = 25; 95% CI = 10-41). CONCLUSION: The DADDS is a valid measure of death anxiety in patients with advanced cancer. It may provide useful information in the assessment and treatment of distress in patients near the end of life.