Rinat Nissim

The desire for hastened death in individuals with advanced cancer: a longitudinal qualitative study.

Research is needed on the desire for hastened death (DHD) in the context of advanced cancer in order to address the clinical, ethical, and legal questions that it raises. The goal of the present qualitative study was to understand the experience of the DHD as expressed by individuals with advanced cancer, and to understand how it evolves over time. Participants were 27 ambulatory patients aged 45-82 years with advanced lung or gastrointestinal cancer. Participants were recruited through theoretical sampling from outpatient clinics at a large cancer center in Toronto Canada, and were asked about the DHD in serial, open-ended interviews until the point of death. A total of 54 interviews were analyzed based on the grounded theory method. The experience of the DHD in the context of advanced cancer was found to be subsumed under three distinct categories: i) DHD as a hypothetical exit plan; ii) DHD as an expression of despair; and iii) DHD as a manifestation of letting go. Each category had unique temporal and qualitative characteristics. The identification of these categories may be important to inform future research on the DHD, the criteria for clinical intervention in individuals who express this desire, and the public debate about physician-assisted suicide and euthanasia for individuals with advanced disease.

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.

Factor structure of the Beck Hopelessness Scale in individuals with advanced cancer

Objective: Although the Beck Hopelessness Scale is often used with the seriously ill, its factor structure has been given relatively little consideration in this context.

GOALS SET IN THE LAND OF THE LIVING/DYING: A LONGITUDINAL STUDY OF PATIENTS LIVING WITH ADVANCED CANCER

A longitudinal qualitative research study was undertaken to provide an understanding of a prolonged experience of advanced cancer, as seen through the eyes of dying individuals. Using a variant of the grounded theory method, the authors theoretically sampled, from outpatient clinics in a large comprehensive cancer treatment center, 27 patients with either advanced lung or gastrointestinal cancer who had an expected survival of up to 2 years. The authors conducted a total of 54 interviews with these patients to learn of their experience of advanced cancer. The authors represent their experience with the core category: striving to grow in the land of the living/dying, symbolizing their sense of finding themselves in a borderland between life and death where their efforts focused on 3 common goals: controlling dying, valuing life in the present, and creating a living legacy. They provide a longitudinal account of how these goals were addressed throughout the illness trajectory and discuss the theoretical and clinical implications of this understanding for the experience of dying from advanced cancer.

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.

Transforming the experience of cancer care: a qualitative study of a hospital-based volunteer psychosocial support service

PurposeAs volunteer support services for cancer patients evolve and seek to gain credibility and acceptance, it is important that these services be carefully evaluated. This paper describes findings from a research study conducted by the Healing Beyond the Body (HBB) program, a hospital-based volunteer psychosocial support service in a comprehensive cancer center in Toronto, Canada. The goal of this study was to gain insight into the experience of patients who have interacted with HBB volunteers and to evaluate the benefits and risks of this program for these patients.Materials and methodsA qualitative research method, based on semi-structured interviews with 15 patients recruited in the Chemotherapy Daycare Unit, was used. The interviews were transcribed and thematically analyzed.ResultsFindings suggest that volunteers can effectively serve an enhanced supportive role in a hospital setting without adverse effects, and that their services are positively received by patients. The following themes were identified in relation to perceived benefits of the HBB volunteer support service: (1) a sense of humanization and normalization; (2) a sense of security; (3) support for non-medical needs; and (4) support for unaccompanied patients. While no negative experiences with the HBB volunteers were reported, the following themes were identified in relation to potential weaknesses of the HBB volunteer service: (1) a limited awareness by patients of the HBB volunteers’ roles and responsibilities; and (2) the lack of a structured role definition for the HBB volunteers at the pre-treatment phase.ConclusionOur findings add to the literature on the contribution of volunteer support services and may serve decision-makers concerned with best practices in utilizing volunteer resources within a cancer hospital structure.

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

BackgroundWe 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/DesignThe 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.DiscussionManaging 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 RegistrationClinicalTrials.gov NCT01506492 4 January 2012.

Finding new bearings: a qualitative study on the transition from inpatient to ambulatory care of patients with acute myeloid leukemia

PurposeTreatment of adult acute myeloid leukemia (AML) is intensive, with induction treatment initiated in an inpatient setting and subsequent consolidation therapy often conducted in an outpatient setting. The purpose of the present qualitative paper is to provide insight into the experience of patients in the transition from inpatient to ambulatory care.MethodsParticipants were 35 AML patients who were interviewed about their experience of the illness and treatment. Utilizing the grounded theory method, we describe the adjustment of participants to the transition to ambulatory care.ResultsAs outpatients, participants described adjusting to the intensity of ambulatory treatment and to the need to assume greater responsibility for their care. They also expressed a growing desire to understand their long-term care plan, compared to their preference to focus on the present prior to discharge, and they were struggling to construct a new sense of identity.ConclusionsAML patients are now leaving acute care settings sicker and earlier. Considering their perceptions can inform interventions to facilitate adjustment during the transition to outpatient care.

The meaning of self-reported death anxiety in advanced cancer:

Background: Death anxiety is important but understudied in palliative care. New self-report measurements have been developed, but their interpretation and clinical utility may not be evident. Aim: To inform our understanding of death anxiety in patients with advanced cancer by exploring the relationship between this self-reported symptom and its clinical presentation. Design: Participants were part of a psychotherapy trial in advanced cancer. First therapy session transcripts were analyzed using interpretive description in patients reporting low, moderate, and high death anxiety on the Death and Dying Distress Scale (DADDS). Setting/participants: A total of 16 participants (10 women and 6 men) with advanced or metastatic cancer were sampled from the Princess Margaret Cancer Centre, Toronto, Canada. Six participants reported low death anxiety scores (Death and Dying Distress Scale: 0–19), five moderate (Death and Dying Distress Scale: 20–50), and five high (Death and Dying Distress Scale: 51–75). Results: The low death anxiety group exhibited psychological readiness for death, or contrastingly, non-reflectiveness about death. The moderate group recognized the imminence of mortality, which impacted treatment decisions and future plans. Prior experience with death was discussed as raising the salience of mortality. The high group felt dominated by powerful emotions and could not make sense of their situation. Their distress was exacerbated by substantial relational concerns. Conclusion: Self-reported death anxiety is affected by the awareness and ability to reflect on mortality. Death and Dying Distress Scale scores may facilitate exploration of this symptom as part of a clinical assessment and may serve to guide treatment approaches. Greater attention to death anxiety is consistent with and recommended by contemporary approaches to palliative care.