CONTEXT: Death anxiety is common in patients with metastatic cancer, but its relationship to brain metastases and cognitive decline is unknown. Early identification of death anxiety and its determinants allows proactive interventions to be offered to those in need.
OBJECTIVE: To identify psychological, physical and disease-related (including brain metastases, cognitive impairment) factors associated with death anxiety in mNSCLC patients.
METHODS: A cross-sectional pilot study with mNSCLC outpatients completing standardized neuropsychological tests and validated questionnaires measuring death anxiety, cognitive concerns, illness intrusiveness, depression, demoralization, self-esteem, and common cancer symptoms. We constructed a composite for objective cognitive function (mean neuropsychological tests z-scores).
RESULTS: Study measures were completed by 78 patients (50% female, median age: 62 years (range:37-82)). Median time since mNSCLC diagnosis was 11 months (range:0-89); 53% had brain metastases. At least moderate death anxiety was reported by 43% (n=33). Objective cognitive impairment was present in 41% (n=32) and perceived cognitive impairment in 27% (n=21). Death anxiety, objective, and perceived cognitive impairment did not significantly differ between patients with and without brain metastases. In univariate analysis, death anxiety was associated with demoralization, depression, self-esteem, illness intrusiveness, common physical cancer symptoms, and perceived cognitive impairment. In multivariate analysis, demoralization (p<0.001) and illness intrusiveness (p=0.001) were associated with death anxiety.
CONCLUSION: Death anxiety and brain metastases are common in mNSCLC patients, but not necessarily linked. The association of death anxiety with both demoralization and illness intrusiveness highlights the importance of integrated psychological and symptom management. Further research is needed on the psychological impact of brain metastases.
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, three months, and six months).
RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06--.10). Anxiety x 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 x Gender x 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.
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.
Background: Evidence supporting early palliative care is based on trials of specialised palliative care, but a more sustainable model might involve mainly primary providers.
Aim: The aim of this study was to compare the characteristics of physicians providing primary and specialised palliative care, their attitudes towards early palliative care and their perception of having sufficient resources for its provision.
Design: Survey distributed by mail and e-mail. Specialised providers were defined as both receiving palliative care referrals from other physicians and not providing palliative care only for their own patients.
Setting/participants: A total of 531 physicians providing palliative care in Canada (71% participation) participated in the study.
Results: Of the participants, 257 (48.4%) provided specialised and 274 (51.6%) primary care. Specialists were more likely to have palliative care training (71.8% vs 35.2%), work in urban areas (94.1% vs 75.6%), academic centres (47.8% vs 26.0%) and on teams (82.4% vs 16.8%), and to provide mainly cancer care (84.4% vs 65.1%) (all p < 0.001). Despite strongly favouring early palliative care, only half in each group agreed they had resources to deliver it; agreement was stronger among family physicians, those working on teams and those with greater availability of community and psychosocial support. Primary providers were more likely to agree that renaming the specialty ‘supportive care’ would increase patient comfort with early palliative care referral (47.4% vs 35.5%, p < 0.001).
Conclusion: Despite strongly favouring the concept, both specialists and primary providers lack resources to deliver early palliative care; its provision may be facilitated by team-based care with appropriate support. Opinions differ regarding the value of renaming palliative care.
Issue: Medical assistance in dying (MAID) became legal in Quebec on December 10, 2015, and in the rest of Canada on June 17, 2016. This enabled 6,749 deaths through physician-assisted suicide or euthanasia between December 10, 2015 and October 31, 2018. While the death of a patient is a common experience for medical trainees, those that occur through MAID have unique features related to the methods, the timeline, the intended role of the physician in causing the death, and the request of the patient that initiates the process. These aspects necessitate a distinct approach to MAID medical education.
Evidence: Despite the legalization of MAID in a growing number of jurisdictions, there is virtually no literature to guide MAID education in clinical practice. The cumulative evidence regarding the impact of patient death on medical students, residents, and attending physicians suggests a need for supported discussion and debriefing to process and reflect on the emotional experiences that follow patient death. This is especially important with MAID, in which there are unique ethical and psychological issues related to the physician's direct role in causing the death of a patient. There is little published research on the impact such deaths have on physicians who provide MAID, or on others who are indirectly involved. However, there is evidence that learners desire MAID-specific education tailored to their unique needs. Didactic education about the medical and legal domains of MAID alone is insufficient to support learners' needs. Experiential case-based learning with supervisory support has the potential to enhance training in end-of-life care in general, and specifically in MAID. The authors' first clinical experience with a patient requesting MAID on an internal medicine clinical teaching unit (CTU) highlighted gaps in their preparedness to meet the associated professional and personal demands. Reflecting on these perceived gaps, and on the needs of learners identified in the literature on patient death and MAID education, the authors created a framework to guide learning at the point of care of a patient requesting MAID. Represented in a MAID Education Cogwheel and discussion guide, this framework specifies learning objectives and methods in six domains: medical, legal, moral, ethical, cultural, and psychosocial. Implications: Following a MAID request, attending physicians can use the framework to guide learners in ongoing conversations addressing these domains. Inter-professional participation can include such disciplines as psychiatry, palliative care, bioethics, pharmacy, nursing, physical and occupational therapy, social work, and spiritual care. Further research is necessary to test this framework to determine its' feasibility, efficacy, and generalizability.
BACKGROUND: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear.
AIM: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses.
DESIGN: A constructivist qualitative grounded theory study was conducted.
SETTING/PARTICIPANTS: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center.
RESULTS: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door-creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust-establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions-addressing patients' assumptions about palliative care as signifying death; and advocating with oncologists-seeding the process of referral by bringing patients' concerns forward.
CONCLUSION: Oncology nurses play a central role in "brokering" the introduction of early palliative care; this process is supported by their relational proximity to patients and their location "in between" the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.
Purpose: Caregivers of patients with cancer cope with socioemotional challenges, which can adversely affect their well-being. We developed an intervention, expressive writing and reading (EWR), to promote emotional processing and social connectedness among caregivers. In a single-arm pilot study, we assessed its feasibility and perceived usefulness.
Methods: Caregivers participated in weekly 1.5-hour EWR workshops offered over 20 weeks. After 4 sessions, they completed semistructured interviews, which were analyzed using qualitative descriptive analysis.
Findings: Of 65 caregivers approached, 25 were eligible, 18 consented, and 9 (50%) caregivers completed at least 4 workshops and the interview. Their responses revealed 3 themes: "inner processing," "interpersonal learning," and "enhanced processing and preparedness." Perceived benefits of EWR included emotional and cognitive processing (individual and collaborative), learning from the emotions and experiences of other caregivers, and preparing for upcoming challenges.
Conclusions:Expressive writing and reading can be a safe and cost-effective supportive intervention for caregivers of patients with cancer.
BACKGROUND: Although the effectiveness of early palliative care for patients with advanced cancer has been demonstrated in several trials, there has been no detailed published description of an early palliative care intervention.
METHOD: In this paper, we delineate the iterative conception and systematic evaluation of a complex intervention called team-based outpatient early palliative care (TO-EPC), and describe the components of the intervention. The intervention was developed based on palliative care theory, review of previous palliative care interventions and practice guidelines. We conducted feasibility testing and piloting of TO-EPC in a phase 2 trial, followed by evaluation in a large cluster randomised trial and qualitative research with patients and caregivers. The qualitative research informed the iterative refinement of the intervention.
RESULTS: Four principles and four domains of care constitute a conceptual framework for TO-EPC. The main domains of care are: coping and support, symptom control, decision-making and future planning. The main principles are that care is flexible, attentive, patient-led and family-centred. The most prominent domain for the initial consultation is coping and support; follow-up visits focus on symptom control, decision-making to maximise quality of life and future planning according to patient readiness. Key tasks are described in relation to each domain.
CONCLUSION: The description of our intervention may assist palliative care teams seeking to implement it, researchers wishing to replicate or build on it and oncologists hoping to adapt it for their patients.
PURPOSE: To describe the practices and opinions of specialized palliative care (SPC) physicians regarding early palliative care for patients with cancer, determine characteristics associated with receiving early referrals; and solicit opinions regarding renaming the specialty "supportive care."
METHODS: The survey was distributed by mail and e-mail to physicians who had previously self-identified as providing palliative care. SPC physicians were defined as receiving palliative care referrals from other physicians and not providing palliative care only for their own patients.
RESULTS: The response rate was 71% (531/746), of whom 257 (48.4%) practiced SPC. Of these SPC physicians, 84% provided mainly cancer care; >90% supported early palliative care referral in oncology and had referral criteria facilitating this, but only 20% received early referrals (>6-month prognosis). There was ambivalence regarding caring for patients with full resuscitation status and responsibility for managing cancer treatment-related complications. SPC physicians receiving early referrals were more likely to be female (p=0.02) and have a postgraduate degree (p=0.02), and less likely to provide mainly cancer care (p=0.03) and to agree that patients should stop chemotherapy before referral (p=0.009). Although 60% agreed that patients perceive the term "palliative care" negatively and 39% believed a name change to supportive care would encourage early referral, only 21% supported renaming the specialty.
CONCLUSIONS: Although most SPC physicians supported early palliative care in oncology, the timing of referrals was often late, and was associated with characteristics of SPC physicians. Few SPC physicians supported renaming palliative care.
PURPOSE: A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample.
METHODS: Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings.
RESULTS: Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death (P values .001) but better on five concerns, including interpersonal and religious/spiritual concerns (P values .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns (P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings.
CONCLUSION: The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.
Objective: We investigated correspondence between symptom severity and symptom bothersomeness in patients with advanced cancer.
Background: Symptom severity is commonly assessed in clinical cancer settings, but bothersomeness of these symptoms is less often measured.
Methods: Participants with advanced cancer enrolled in a cluster-randomized trial of early palliative care completed the Edmonton Symptom Assessment System (ESAS) and the quality of life at the end of life (QUAL-E) measure as part of their baseline assessment. For each symptom, we examined the correspondence between the symptom being indicated as most severe on the ESAS and rated as most bothersome on the QUAL-E.
Results: For the 386 patients who completed relevant sections of the ESAS and QUAL-E, tiredness (32.8%), sleep (23.8%), and appetite (20.2%) were most frequently rated as most severe, whereas pain (28.9%) and tiredness (24.3%) were most frequently indicated as most bothersome. The most bothersome and most severe symptom corresponded in 42%. Pain and/or tiredness were consistently among the top three most bothersome symptoms, whereas appetite was frequently rated the most severe symptom but was rarely perceived as the most bothersome. The probability that patients rating a symptom as most severe would also rate it as most bothersome was highest for pain (66%), nausea (58%), and tiredness (40%).
Discussion: ESAS symptom severity does not necessarily indicate patients' most bothersome symptom; regardless of severity, pain and tiredness are most frequently perceived as most bothersome. Further research should investigate the clinical benefits of patients also indicating their three most bothersome ESAS symptoms.
PURPOSE: We designed a novel, manualized intervention called Emotion And Symptom-focused Engagement (EASE) for acute leukemia (AL) and report here on a phase II randomized controlled trial (RCT) to assess its feasibility and preliminary efficacy.
METHODS: Patients were recruited within 1 month of hospital admission and randomized to EASE plus usual care (UC) or UC alone. EASE includes (1) EASE-psy, a tailored psychotherapy delivered over 8 weeks, and (2) EASE-phys, weekly physical symptom screening over 8 weeks to trigger early palliative care. The primary outcome was traumatic stress symptoms; secondary outcomes included physical symptom burden and quality of life. Assessments were conducted at baseline and at 4, 8, and 12 weeks. Between-group differences were evaluated using multilevel modeling.
RESULTS: Forty-two patients were randomized to EASE (n = 22) or UC (n = 20), with 76% retention at 12 weeks. Predefined feasibility outcomes were met: 86% (19/22) of EASE participants completed = 50% of EASE-psy sessions (goal = 64%); 100% received Edmonton Symptom Assessment System (ESAS, modified for AL) screenings, 64% (14/22) of whom completed = 50% of planned screenings (goal =50%); and 100% with scores = 4/10 on any physical ESAS-AL item had = 1 meeting with the EASE-phys team (goal 100%). Significant treatment-group differences favoring EASE were observed in traumatic stress symptoms at 4 and 12 weeks, and pain intensity and interference at 12 weeks (all p < .05).
CONCLUSIONS: EASE is feasible in patients newly diagnosed with AL and shows promise of effectiveness. These results warrant a larger RCT to provide evidence for its more routine use as a standard of care.
BACKGROUND: Ensuring a good death in individuals with advanced disease is a fundamental goal of palliative care. However, the lack of a validated patient-centered measure of quality of dying and death in advanced cancer has limited quality assessments of palliative-care interventions and outcomes.
AIM: To examine item characteristics and the factor structure of the Quality of Dying and Death Questionnaire in advanced cancer.
DESIGN:: Cross-sectional study with pooled samples.
SETTING/PARTICIPANTS: Caregivers of deceased advanced-cancer patients (N = 602; mean ages = 56.39–62.23 years), pooled from three studies involving urban hospitals, a hospice, and a community care access center in Ontario, Canada, completed the Quality of Dying and Death Questionnaire 8–10 months after patient death.
RESULTS: Psychosocial and practical item ratings demonstrated negative skewness, suggesting positive perceptions; ratings of symptoms and function were poorer. Of four models evaluated using confirmatory factor analyses, a 20-item, four-factor model, derived through exploratory factor analysis and comprising Symptoms and Functioning, Preparation for Death, Spiritual Activities, and Acceptance of Dying, demonstrated good fit and internally consistent factors (Cronbach’s a = 0.70–0.83). Multiple regression analyses indicated that quality of dying was most strongly associated with Symptoms and Functioning and that quality of death was most strongly associated with Preparation for Death (p < 0.001).
CONCLUSION: A new four-factor model best characterized quality of dying and death in advanced cancer as measured by the Quality of Dying and Death Questionnaire. Future research should examine the value of adding a connectedness factor and evaluate the sensitivity of the scale to detect intervention effects across factors.
OBJECTIVE: To identify how therapists invite patients with advanced cancer to engage with alternative perspectives about their illness trajectory and their end of life.
METHODS: Sequences of talk in which a therapist introduced a patient to alternative perspectives, were transcribed and analysed using the method of conversation analysis.
RESULTS: The analysis identifies one subtle way a patient is invited to consider an alternative perspective relating to their disease progression. Meaning expansion enquiries invite the patient to expand on the meaning of an utterance and in doing so, implicitly problematize the singularity of the patient's assumptions, without directly challenging them. The questions work as preliminary moves, providing the patient with the opportunity to expand on their assumptions. This enables the therapist to subsequently present an alternative perspective in a way that incorporates the patient's expanded perspective.
CONCLUSION: The analysis reveals a skilful way in which therapists can cautiously and collaboratively introduce a patient to alternative perspectives concerning end-of-life, without invalidating the patient's perspective in this particularly delicate context.
PRACTICE IMPLICATIONS: Whilst mentalization is considered an important therapeutic process, the present study reveals precisely how this phenomenon can be enacted in therapy and within the particularly challenging context of end-of-life.
Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.
Objective: Consultation-liaison (C-L) psychiatrists are involved in physician-assisted death (PAD) teams in many permitting jurisdictions. This paper will describe our Canadian PAD experience over 2 years, highlighting the role of C-L psychiatrists, at a large hospital network that provides medical assistance in dying (MAID, as this is called in Canada).
Methods: We will describe the Canadian criteria for MAID, our multispecialty MAID team experience and the roles, issues and concerns experienced by C-L psychiatrists. Some brief patient examples will be provided.
Results: Our MAID team has managed 186 MAID inquiries, assessed 95 MAID requests and provided 49 MAID interventions over a 24 month period. The 2 co-leaders of the MAID team, 8 assessors and 1 intervention physician are C-L psychiatrists. Each of the MAID criteria: grievous medical condition, advanced state of irreversible decline, intolerable suffering, natural death reasonably foreseeable, voluntary request, capacity and informed consent pose specific challenges to be resolved in the assessment. Several unique MAID issues, including the role of education and mandatory psychiatric assessment and protocols will also be discussed.
Conclusions: Our experience shows that C-L psychiatrists are well-situated to provide vital expertise and leadership to multispecialty PAD teams.
PURPOSE: Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly.
METHODS: This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used.
RESULTS: Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries.
CONCLUSION: A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries.
CONTEXT: Residential hospices may be an optimal compromise between home and hospital settings for end-of-life care, but there has been little systematic research regarding the quality of dying and death in such locations.
OBJECTIVES: To assess the quality of dying and death of patients who received end-of-life care in a residential hospice and its relationship to hospice length of stay (LOS) and prior receipt of palliative care.
METHODS: A total of 100 caregivers of patients who died in a residential hospice in downtown Toronto, Canada, were recruited 4-6 months after patient death. The quality of dying and death was measured, based on interviews with bereaved caregivers, using the Quality of Dying and Death (QODD) questionnaire.
RESULTS: The overall mean QODD score was 68.85±11.62 which is in the intermediate ("neither good nor bad") range (30-70) of the scale. The lowest QODD subscale score was on the Transcendence subscale, which evaluates death-related concerns; this was 59.48±25.37, with ratings in 14.6% of the sample in the "terrible to poor" (0-29) range. QODD scores were higher for patients with hospice LOS >1 week (72.21±9.64) than for those with a shorter LOS (60.38±11.92) (p<0.001).
CONCLUSIONS: Overall quality of dying and death was perceived as average to above average, in an urban residential hospice, although death-related distress was present in a substantial minority of patients. The association of better QODD with hospice LOS >1 week may be due to better clinical status on admission and/or longer duration of time that is needed to achieve optimal outcomes.
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.
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.