Sarah Hales

The Quality of Dying and Death

During the past decade, research has examined definitions and conceptualizations of quality of dying and death in different populations. At the same time, there has been a call to clarify the distinctions between quality of dying and death and other end-of-life constructs. The purposes of this article are to (1) review research that examined definitions and conceptualizations of the quality of dying and death, (2) clarify the quality of dying and death construct and its distinction from quality of life and quality of care at the end of life, and (3) outline challenges that remain for health care professionals, researchers, and policy makers. Review of the literature revealed that the quality of dying and death construct is multidimensional, with 7 broad domains: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of health care, life closure and death preparation, and the circumstances of death. The quality of dying and death is subjectively determined with numerous factors that influence its judgment, including culture, type and stage of disease, and social and professional role in the dying experience. Quality of dying and death is broader in scope than either quality of life at the end of life or quality of care at the end of life, although there is overlap among these constructs.

Review: the quality of dying and death: a systematic review of measures.

To determine whether modern medicine is facilitating ‘good’ deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950—2008), Healthstar (1966—2008), and CINAHL (1982—2008) were searched using keyword terms ‘quality of dying/death’ and ‘good/bad death’. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. The evaluation criteria included a description of the measure development (validated or ad hoc), the provision of a definition of quality of dying and death, an empirical basis for the measure, the incorporation of multiple domains and the subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death.

Managing Cancer And Living Meaningfully (CALM): phase 2 trial of a brief individual psychotherapy for patients with advanced cancer.

Background: Advanced cancer brings substantial physical and psychosocial challenges that may contribute to emotional distress and diminish well-being. In this study, we present preliminary data concerning the effectiveness of a new brief individual psychotherapy, Managing Cancer And Living Meaningfully (CALM), designed to help individuals cope with this circumstance. Aim: To test the feasibility and preliminary effectiveness of CALM to reduce emotional distress and promote psychological well-being and growth. Design: CALM is a brief, manualized, semi-structured individual psychotherapy for patients with advanced cancer. This study employed a phase 2 intervention-only design. The primary outcome was depressive symptoms and the secondary outcomes were death anxiety, attachment security, spiritual well-being and psychological growth. These were assessed at 3 months (t1) and 6 months (t2). Multilevel regression was used to model change over time. Setting/participants: A total of 50 patients with advanced or metastatic cancer were recruited from the Princess Margaret Cancer Centre, Toronto, Canada. Results: A total of 39 patients (78%) were assessed at baseline, 24 (48%) at t1, and 16 (32%) at t2. Analyses revealed reductions over time in depressive symptoms: beta = −0.13, confidence interval (CI.95) = (−0.23, −0.022) and death anxiety: beta = −0.23, CI.95 (−0.40, −0.061); and an increase in spiritual well-being: beta = 0.14, CI.95 (0.026, 0.26). Conclusions: CALM may be a feasible intervention to benefit patients with advanced cancer. The results are encouraging, despite attrition and small effect sizes, and support further study.

Managing Cancer and Living Meaningfully (CALM): A qualitative study of a brief individual psychotherapy for individuals with advanced cancer

Background: Although psychosocial care has been regarded as central to palliative and supportive care, there have been few empirically tested approaches to individual intervention. Aim: The subjective experience of advanced cancer patients receiving a new manualized brief individual psychotherapy, referred to as Managing Cancer and Living Meaningfully (CALM), was examined prior to the initiation of a randomized controlled trial testing the effectiveness of this intervention. Design: Semi-structured interviews were conducted with patients who had a diagnosis of advanced cancer, and who underwent the intervention. Setting/Participants: Patients were recruited from a large urban regional cancer center in Toronto, Canada. The 10 interviewees included seven women and three men. All had completed between three to six CALM sessions prior to the interview. Results: The CALM intervention was associated with profound and unique patient-identified benefits and no patient-identified risks or concerns. Five interrelated benefits of the intervention were identified: (1) a safe place to process the experience of advanced cancer; (2) permission to talk about death and dying; (3) assistance in managing the illness and navigating the healthcare system; (4) resolution of relational strain; and (5) an opportunity to ‘be seen as a whole person’ within the healthcare system. These benefits were regarded by participants as unique in their cancer journey. Conclusions: Findings from a qualitative study suggest that the CALM intervention provides substantial benefits for patients with advanced cancer prior to the end of life. Findings informed the development of a randomized controlled trial to evaluate the effectiveness of this intervention.

Measuring death-related anxiety in advanced cancer: preliminary psychometrics of the Death and Dying Distress Scale.

The alleviation of distress associated with death and dying is a central goal of palliative care, despite the lack of routine measurement of this outcome. In this study, we introduce the Death and Dying Distress Scale (DADDS), a new, brief measure we have developed to assess death-related anxiety in advanced cancer and other palliative populations. We describe its preliminary psychometrics based on a sample of 33 patients with advanced or metastatic cancer. The DADDS broadly captures distress about the loss of time and opportunity, the process of death and dying, and its impact on others. The initial version of the scale has a one-factor structure and good internal reliability. Dying and death-related distress was positively associated with depression and negatively associated with spiritual, emotional, physical, and functional well-being, providing early evidence of construct validity. This distress was relatively common, with 45% of the sample scoring in the upper reaches of the scale, suggesting that the DADDS may be a relevant outcome for palliative intervention. We conclude by presenting a revised 15-item version of the scale for further study in advanced cancer and other palliative populations.

The quality of dying and death in cancer and its relationship to palliative care and place of death.

CONTEXTnHealth care is increasingly focused on end-of-life care outcomes, but relatively little attention has been paid to how the dying experience is subjectively evaluated by those involved in the process.nnnOBJECTIVESnTo assess the quality of death of patients with cancer and examine its relationship to receipt of specialized palliative care and place of death.nnnMETHODSnA total of 402 deaths of cancer patients treated at a university-affiliated hospital and home palliative care program in downtown Toronto, Ontario, Canada were evaluated by bereaved caregivers eight to 10xa0months after patient death with the Quality of Dying and Death (QODD) questionnaire. Caregivers also reported on bereavement distress, palliative care services received, and place of death.nnnRESULTSnOverall quality of death was rated good to almost perfect by 39% and neither good nor bad by 61% of caregivers. The lowest QODD subscale scores assessed symptom control (rated terrible to poor by 15% of caregivers) and transcendence over death-related concerns (rated terrible to poor by 19% of caregivers). Multivariable analyses revealed that late or no specialized palliative care was associated with worse death preparation, and home deaths were associated with better symptom control, death preparation, and overall quality of death.nnnCONCLUSIONnThe overall quality of death was rated positively for the majority of these cancer patients. Ratings were highest for home deaths perhaps because they are associated with fewer complications and/or a more extensive support network. For a substantial minority, symptom control and death-related distress at the end of life were problematic, highlighting areas for intervention.

The FAMCARE-Patient scale: Measuring satisfaction with care of outpatients with advanced cancer

OBJECTIVEnTo provide confirmatory results concerning the psychometric properties of a measure of satisfaction with oncology care for use with advanced stage cancer patients, and test its sensitivity to change.nnnMETHODSnWe analysed data from 315 outpatients with advanced cancer participating in a randomised controlled trial of early palliative care intervention versus routine oncology care, and their caregivers. Patients completed a 16-item measure of patient satisfaction (FAMCARE-P16), based on the FAMCARE measure of family satisfaction with cancer care, and measures assessing interactions with healthcare providers, performance status and symptom burden. Caregivers completed the original FAMCARE measure. We used confirmatory factor analysis to test the patient satisfaction measure for a single-factor structure. To determine construct validity, we assessed correlations between patient satisfaction and the other patient and caregiver measures. To assess responsiveness to change, we repeated paired t-test analyses on the 13-item and 16-item scales for 150 patients participating in a phase II trial of palliative care effectiveness, in which the FAMCARE-P was measured at baseline, 1-week and 1-month after an outpatient palliative care intervention.nnnRESULTSnA reduced 13-item version of our measure (FAMCARE-P13) possessed a one-factor structure with high reliability. Patient satisfaction was correlated in predicted directions with physical distress, communication and relationship with healthcare providers, and caregiver satisfaction. There were statistically significant increases in patient satisfaction at 1 week (p<0.0001) and 1 month (p<0.001).nnnCONCLUSIONSnWe recommend the use of the FAMCARE-P13 to assess satisfaction with outpatient palliative care interventions of patients with advanced stage cancer.

Initial Validation of the Death and Dying Distress Scale for the Assessment of Death Anxiety in Patients With Advanced Cancer

CONTEXTnThe 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.nnnOBJECTIVESnThis study aims to validate the recent 15-item DADDS by examining its factor structure and construct validity.nnnMETHODSnSixty 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.nnnRESULTSnFactor 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. Cronbachs alpha was 0.95. Death anxiety was associated with less preparation for end of life (rxa0=xa0-0.68, Pxa0<xa00.0001), more generalized anxiety (rxa0=xa00.63, Pxa0<xa00.0001), and more depressive symptom severity (rxa0=xa00.50, Pxa0<xa00.0001). Individuals with major depression had greater death anxiety than the nondepressed (mean differencexa0=xa017; 95% CIxa0= 1.5-33), as did individuals with minor depression (mean differencexa0=xa025; 95% CIxa0= 10-41).nnnCONCLUSIONnThe 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.

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.

Preparation for the end of life in patients with advanced cancer and association with communication with professional caregivers.

Previous studies regarding patients end of life (EOL) preparation have focused mainly on practical tasks, such as advance directives. In this study, we investigate the relational and personal aspects of EOL preparation, using a patient‐completed questionnaire, and examine associations with clinician–patient communication (CPC) and other variables.