Publications by authors named "Gary Rodin"

218 Publications

Public knowledge and attitudes concerning palliative care.

BMJ Support Palliat Care 2021 Oct 7. Epub 2021 Oct 7.

Department of Biostatistics, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.

Objective: WHO recommends early integration of palliative care alongside usual care to improve quality of life, although misunderstanding of palliative care may impede this. We compared the public's perceived and actual knowledge of palliative care, and examined the relationship of this knowledge to attitudes concerning palliative care.

Methods: We analysed data from a survey of a representative sample of the Canadian public, accessed through a survey panel in May-June 2019. We compared high perceived knowledge ('know what palliative care is and could explain it') with actual knowledge of the WHO definition (knew ≥5/8 components, including that palliative care can be provided early in the illness and together with life-prolonging treatments), and examined their associations with attitudes to palliative care.

Results: Of 1518 adult participants residing in Canada, 45% had high perceived knowledge, of whom 46% had high actual knowledge. Participants with high (vs low) perceived knowledge were more likely to associate palliative care with end-of-life care (adjusted OR 2.15 (95% CI 1.66 to 2.79), p<0.0001) and less likely to believe it offered hope (0.62 (95% CI 0.47 to 0.81), p=0.0004). Conversely, participants with high (vs low) actual knowledge were less likely to find palliative care fearful (0.67 (95% CI 0.52 to 0.86), p=0.002) or depressing (0.72 (95% CI 0.56 to 0.93), p=0.01) and more likely to believe it offered hope (1.88 (95% CI 1.46 to 2.43), p<0.0001).

Conclusions: Stigma regarding palliative care may be perpetuated by those who falsely believe they understand its meaning. Public health education is needed to increase knowledge about palliative care, promote its early integration and counter false assumptions.
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http://dx.doi.org/10.1136/bmjspcare-2021-003340DOI Listing
October 2021

Caregiver bereavement outcomes in advanced cancer: associations with quality of death and patient age.

Support Care Cancer 2021 Sep 9. Epub 2021 Sep 9.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.

Purpose: We investigated relationships between domains of quality of dying and death in patients with advanced cancer and their caregivers' bereavement outcomes and the moderating effect of patient age at death.

Methods: Bereaved caregivers of deceased patients with advanced cancer who had participated in an early palliative care trial completed measures of grief (Texas Revised Inventory of Grief [TRIG]), complicated grief (Prolonged Grief Inventory [PG-13]), and depression (Center for Epidemiologic Studies-Depression [CESD-10]). They also completed the Quality of Dying and Death measure (QODD), which assesses patients' symptom control, preparation for death, connectedness with loved ones, and sense of peace with death.

Results: A total of 157 bereaved caregivers completed the study. When patient age × QODD subscale interactions were included, greater death preparation was related to less grief at patient death (past TRIG: β =  - .25, p = .04), less current grief (present TRIG: β =  - .26, p = .03), less complicated grief (PG-13: β =  - .37, p = .001), and less depression (CESD-10: β =  - .35, p = .005). Greater symptom control was related to less current grief (present TRIG: β =  - .27, p = .02), less complicated grief (PG-13: β =  - .24, p = .03), and less depression (CESD-10: β =  - .29, p = .01). Significant patient age × connectedness interaction effects for current grief (present TRIG: β = .30, p = .02) and complicated grief (PG-13: β = .29, p = .007) indicated that, with less connectedness, younger patient age at death was associated with greater caregiver grief.

Conclusion: Better end-of-life death preparation and symptom control for patients with cancer may attenuate later caregiver grief and depression. Less connectedness between younger patients and their families may adversely affect caregiver grief.
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http://dx.doi.org/10.1007/s00520-021-06536-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8426162PMC
September 2021

Phase II Trial of Symptom Screening With Targeted Early Palliative Care for Patients With Advanced Cancer.

J Natl Compr Canc Netw 2021 Sep 7:1-10. Epub 2021 Sep 7.

12Department of Biostatistics, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.

Background: Routine early palliative care (EPC) improves quality of life (QoL) for patients with advanced cancer, but it may not be necessary for all patients. We assessed the feasibility of Symptom screening with Targeted Early Palliative care (STEP) in a phase II trial.

Methods: Patients with advanced cancer were recruited from medical oncology clinics. Symptoms were screened at each visit using the Edmonton Symptom Assessment System-revised (ESAS-r); moderate to severe scores (screen-positive) triggered an email to a palliative care nurse, who called the patient and offered EPC. Patient-reported outcomes of QoL, depression, symptom control, and satisfaction with care were measured at baseline and at 2, 4, and 6 months. The primary aim was to determine feasibility, according to predefined criteria. Secondary aims were to assess whether STEP identified patients with worse patient-reported outcomes and whether screen-positive patients who accepted and received EPC had better outcomes over time than those who did not receive EPC.

Results: In total, 116 patients were enrolled, of which 89 (77%) completed screening for ≥70% of visits. Of the 70 screen-positive patients, 39 (56%) received EPC during the 6-month study and 4 (6%) received EPC after the study end. Measure completion was 76% at 2 months, 68% at 4 months, and 63% at 6 months. Among screen-negative patients, QoL, depression, and symptom control were substantially better than for screen-positive patients at baseline (all P<.0001) and remained stable over time. Among screen-positive patients, mood and symptom control improved over time for those who accepted and received EPC and worsened for those who did not receive EPC (P<.01 for trend over time), with no difference in QoL or satisfaction with care.

Conclusions: STEP is feasible in ambulatory patients with advanced cancer and distinguishes between patients who remain stable without EPC and those who benefit from targeted EPC. Acceptance of the triggered EPC visit should be encouraged. ClinicalTrials.gov identifier: NCT04044040.
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http://dx.doi.org/10.6004/jnccn.2020.7803DOI Listing
September 2021

Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts.

J Palliat Med 2021 09;24(9):1274-1279

Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the on a monthly basis during the fall and winter of 2021-2022.
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http://dx.doi.org/10.1089/jpm.2021.0224DOI Listing
September 2021

Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts.

J Palliat Med 2021 09;24(9):1274-1279

Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the on a monthly basis during the fall and winter of 2021-2022.
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http://dx.doi.org/10.1089/jpm.2021.0224DOI Listing
September 2021

Medical Assistance in Dying in patients with advanced cancer and their caregivers: a mixed methods longitudinal study protocol.

BMC Palliat Care 2021 Jul 21;20(1):117. Epub 2021 Jul 21.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Avenue, 12th Floor, Toronto, Ontario, M5G 2C1, Canada.

Background: The legal criteria for medical assistance in dying (MAiD) for adults with a grievous and irremediable medical condition were established in Canada in 2016. There has been concern that potentially reversible states of depression or demoralization may contribute to the desire for death (DD) and requests for MAiD. However, little is known about the emergence of the DD in patients, its impact on caregivers, and to what extent supportive care interventions affect the DD and requests for MAiD. The present observational study is designed to determine the prevalence, predictors, and experience of the DD, requests for MAiD and MAiD completion in patients with advanced or metastatic cancer and the impact of these outcomes on their primary caregivers.

Methods: A cohort of patients with advanced or metastatic solid tumour cancers and their primary caregivers will be recruited from a large tertiary cancer centre in Toronto, Ontario, Canada, to a longitudinal, mixed methods study. Participants will be assessed at baseline for diagnostic information, sociodemographic characteristics, medical history, quality of life, physical and psychological distress, attitudes about the DD and MAiD, communication with physicians, advance care planning, and use of psychosocial and palliative care interventions. Measures will subsequently be completed every six months and at the time of MAiD requests. Quantitative assessments will be supplemented by qualitative interviews in a subset of participants, selected using quota sampling methods.

Discussion: This study has the potential to add importantly to our understanding of the prevalence and determinants of the DD, MAiD requests and completions in patients with advanced or metastatic cancer and of the experience of both patients and caregivers in this circumstance. The findings from this study may also assist healthcare providers in their conversations about MAiD and the DD with patients and caregivers, inform healthcare providers to ensure appropriate access to MAiD, and guide modifications being considered to broaden MAiD legislation and policy.
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http://dx.doi.org/10.1186/s12904-021-00793-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8296526PMC
July 2021

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

J Gen Intern Med 2021 Jul 21. Epub 2021 Jul 21.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.

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.
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http://dx.doi.org/10.1007/s11606-021-07012-zDOI Listing
July 2021

Biomedicine and the soul of medicine: optimising the balance.

Lancet Oncol 2021 07;22(7):907-909

Institute of Cancer Policy, School of Cancer Sciences, King's College London, London, UK.

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http://dx.doi.org/10.1016/S1470-2045(21)00271-0DOI Listing
July 2021

Referral Practices of Cardiologists to Specialist Palliative Care in Canada.

CJC Open 2021 Apr 9;3(4):460-469. Epub 2020 Dec 9.

Department of Supportive Care, Toronto General Hospital, University Health Network, Toronto, Ontario, Canada.

Background: Patients with heart failure have palliative care needs that can be effectively addressed by specialist palliative care (SPC). Despite this, SPC utilization by this patient population is low, suggesting barriers to SPC referral. We sought to determine the referral practices of cardiologists to SPC.

Methods: Cardiologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional, and attitudinal factors were analyzed using multiple and logistic regression.

Results: The response rate was 51% (551 of 1082). Between 35.1% and 64.2% of respondents were unaware of referral criteria to local SPC services. Of the respondents, 29% delayed SPC referral because of prognostic uncertainty, and 46.8% believed that SPC prioritizes patients with cancer. In actual practice, nearly three-fourths of cardiologists referred late. Referral frequency was associated with greater availability of SPC services for patients with nonmalignant diseases ( = 0.008), a higher number of palliative care settings accepting patients receiving continuous infusions or pursuing acute care management ( < 0.001), satisfaction with services ( < 0.001), and less equation of palliative care with end-of-life care ( < 0.001). Early timing of referral was associated with greater availability of SPC services for patients with nonmalignant diseases and less equation of palliative care with end-of-life care.

Conclusions: The findings suggest that barriers to timely SPC referral include an insufficiency of services for patients with nonmalignant diseases especially in the outpatient setting, the perception that SPC services do not accept patients receiving cardiology-specific treatments, and a misperception about the identity of palliative care.
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http://dx.doi.org/10.1016/j.cjco.2020.12.002DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8129434PMC
April 2021

Early palliative care and quality of dying and death in patients with advanced cancer.

BMJ Support Palliat Care 2021 Feb 22. Epub 2021 Feb 22.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada

Objective: Early palliative care (EPC) in the outpatient setting improves quality of life for patients with advanced cancer, but its impact on quality of dying and death (QODD) and on quality of life at the end of life (QOL-EOL) has not been examined. Our study investigated the impact of EPC on patients' QODD and QOL-EOL and the moderating role of receiving inpatient or home palliative care.

Method: Bereaved family caregivers who had provided care for patients participating in a cluster-randomised trial of EPC completed a validated QODD scale and indicated whether patients had received additional home palliative care or care in an inpatient palliative care unit (PCU). We examined the effects of EPC, inpatient or home palliative care, and their interactions on the QODD total score and on QOL-EOL (last 7 days of life).

Results: A total of 157 caregivers participated. Receipt of EPC showed no association with QODD total score. However, when additional palliative care was included in the model, intervention patients demonstrated better QOL-EOL than controls (p=0.02). Further, the intervention by PCU interaction was significant (p=0.02): those receiving both EPC and palliative care in a PCU had better QOL-EOL than those receiving only palliative care in a PCU (mean difference=27.10, p=0.002) or only EPC (mean difference=20.59, p=0.02).

Conclusion: Although there was no association with QODD, EPC was associated with improved QOL-EOL, particularly for those who also received inpatient care in a PCU. This suggests a long-term benefit from early interdisciplinary palliative care on care throughout the illness.

Trial Registration Number: ClinicalTrials.gov Registry (#NCT01248624).
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http://dx.doi.org/10.1136/bmjspcare-2021-002893DOI Listing
February 2021

'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta-synthesis'.

Eur J Cancer Care (Engl) 2021 Jul 5;30(4):e13424. Epub 2021 Feb 5.

Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto, Departamento de Psicologia, Universidade de São Paulo, Ribeirão Preto, São Paulo, Brazil.

Introduction: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare.

Objective: This meta-synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care.

Methods: A systematic review was performed in six databases, and 14 studies were included in this meta-synthesis.

Results: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end-of-life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering.

Conclusion: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi-professional psychosocial care.
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http://dx.doi.org/10.1111/ecc.13424DOI Listing
July 2021

Early palliative intervention: effects on patient care satisfaction in advanced cancer.

BMJ Support Palliat Care 2021 Jan 8. Epub 2021 Jan 8.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada

Objective: In a cluster-randomised controlled trial of early palliative care (EPC) in advanced cancer, EPC was robustly associated with increased patient satisfaction with care. The present study evaluated mediational mechanisms underlying this EPC effect, including improved physical and psychological symptoms and quality of life, as well as relationships with healthcare providers and preparation for end of life.

Method: Participants with advanced cancer (n=461) completed measures at baseline and then monthly to 4 months. Mediational analyses, using a robust bootstrapping approach, focused on 3-month and 4-month follow-up data.

Results: At 3 months, EPC decreased psychological symptoms, which resulted in greater satisfaction either directly (β=0.05) or through greater quality of life (β=0.02). At 4 months, EPC increased satisfaction through improved quality of life (β=0.08). Physical symptom management showed no significant mediational effects at either time point. Better relationships with healthcare providers consistently mediated the EPC effect on patient satisfaction at 3 and 4 months, directly (β=0.13-0.16) and through reduced psychological symptoms and/or improved quality of life (β=0.00-0.02). At 4 months, improved preparation for end-of-life mediated EPC effects on satisfaction by enhancing quality of life (β=0.01) or by reducing psychological symptoms and thereby increasing quality of life (β=0.02).

Conclusion: EPC increases satisfaction with care in advanced cancer by attending effectively to patients' emotional distress and quality of life, enhancing collaborative relationships with healthcare providers, and addressing concerns about preparation for end-of-life.

Trial Registration Number: NCT01248624.
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http://dx.doi.org/10.1136/bmjspcare-2020-002710DOI Listing
January 2021

Validation of the Death and Dying Distress Scale in patients with advanced cancer.

Psychooncology 2021 05 18;30(5):716-727. Epub 2021 Jan 18.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.

Background: Distress about dying and death is an important clinical and research outcome in advanced cancer. A 15-item Death and Dying Distress Scale (DADDS) measure has undergone preliminary validation, but full validation in a large sample has not previously been reported. We investigated its psychometric characteristics and responsiveness to a therapeutic intervention.

Methods: This is a secondary analysis of baseline data obtained from a randomized controlled trial of psychotherapeutic intervention for patients with advanced cancer. Participants (n = 386) completed the DADDS, and measures of depression, anxiety, demoralization, quality of life (including preparation for end of life), spirituality, attachment security, and symptom burden.

Results: A confirmatory factor analysis revealed factors related to "Finitude" and to "Dying." Both factors showed good internal consistency (Cronbach α = 0.861-0.949). DADDS scores were significantly higher in females, those with lower income and not working. Construct validity was demonstrated by a positive correlation between DADDS and demoralization (r = 0.569-0.679), and a negative correlation with preparation for the end of life (r = -0.475 to -0.678). At 6 months, intervention participants with moderate DADDS scores at baseline reported significantly lower DADDS scores on both factors compared to usual care.

Conclusions: The DADDS is a valid and brief two-factor measure that assesses distress related to the shortness of time and to the process of dying. The total and factor scores have utility in the clinical and research assessment of death-related distress in patients with advanced cancer.
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http://dx.doi.org/10.1002/pon.5620DOI Listing
May 2021

Testing the Treatment Integrity of the Managing Cancer and Living Meaningfully Psychotherapeutic Intervention for Patients With Advanced Cancer.

Front Psychol 2020 3;11:561997. Epub 2020 Dec 3.

Department of Medical Psychology and Medical Sociology, Section of Psychosocial Oncology, University Medical Center Leipzig, Leipzig, Germany.

Introduction: The Managing Cancer and Living Meaningfully (CALM) therapy for patients with advanced cancer was tested against a supportive psycho-oncological counseling intervention (SPI) in a randomized controlled trial (RCT). We investigated whether CALM was delivered as intended (therapists' adherence); whether CALM therapists with less experience in psycho-oncological care show higher adherence scores; and whether potential overlapping treatment elements between CALM and SPI can be identified (treatment differentiation).

Methods: Two trained and blinded raters assessed on 19 items four subscales of the Treatment Integrity Scale covering treatment domains of CALM (SC: Symptom Management and Communication with Health Care Providers; CSR: Changes in Self and Relationship with Others; SMP: Spiritual Well-being and Sense of Meaning and Purpose; FHM: Preparing for the Future, Sustaining Hope and Facing Mortality). A random sample of 150 audio recordings (75 CALM, 75 SPI) were rated on a three-point Likert scale with 1 = "adherent to some extent," 2 = "adherent to a sufficient extent," 3 = "very adherent."

Results: All 19 treatment elements were applied, but in various frequencies. CALM therapists most frequently explored symptoms and/or relationship to health care providers (SC_1: n_ = 62; 83%) and allowed expression of sadness and anxiety about the progression of disease (FHM_2: n_ = 62; 83%). The exploration of CALM treatment element SC_1 was most frequently implemented in a satisfactory or excellent manner (n_ = 34; 45%), whereas the treatment element SMP_4: Therapist promotes acknowledgment that some life goals may no longer be achievable (n_ = 0; 0%) was not implemented in a satisfactory manner. In terms of treatment differentiation, no treatment elements could be identified which were applied significantly more often by CALM therapists than by SPI therapists.

Conclusion: Results verify the application of CALM treatment domains. However, CALM therapists' adherence scores indicated manual deviations. Furthermore, raters were not able to significantly distinguish CALM from SPI, implying that overlapping treatment elements were delivered to patients.
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http://dx.doi.org/10.3389/fpsyg.2020.561997DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7744681PMC
December 2020

Timing of Palliative Care Referral Before and After Evidence from Trials Supporting Early Palliative Care.

Oncologist 2021 04 2;26(4):332-340. Epub 2021 Jan 2.

Division of Palliative Medicine, Department of Medicine, University of Toronto, Toronto, Canada.

Background: Evidence from randomized controlled trials has demonstrated benefits in quality of life outcomes from early palliative care concurrent with standard oncology care in patients with advanced cancer. We hypothesized that there would be earlier referral to outpatient palliative care at a comprehensive cancer center following this evidence.

Materials And Methods: Administrative databases were reviewed for two cohorts of patients: the pre-evidence cohort was seen in outpatient palliative care between June and November 2006, and the post-evidence cohort was seen between June and November 2015. Timing of referral was categorized, according to time from referral to death, as early (>12 months), intermediate (>6 months to 12 months), and late (≤6 months from referral to death). Univariable and multivariable ordinal logistic regression analyses were used to determine demographic and medical factors associated with timing of referral.

Results: Late referrals decreased from 68.8% pre-evidence to 44.8% post-evidence; early referrals increased from 13.4% to 31.1% (p < .0001). The median time from palliative care referral to death increased from 3.5 to 7.0 months (p < .0001); time from diagnosis to referral was also reduced (p < .05). On multivariable regression analysis, earlier referral to palliative care was associated with post-evidence group (p < .0001), adjusting for shorter time since diagnosis (p < .0001), referral for pain and symptom management (p = .002), and patient sex (p = .04). Late referrals were reduced to <50% in the breast, gynecological, genitourinary, lung, and gastrointestinal tumor sites.

Conclusions: Following robust evidence from trials supporting early palliative care for patients with advanced cancer, patients were referred substantially earlier to outpatient palliative care.

Implications For Practice: Following published evidence demonstrating the benefit of early referral to palliative care for patients with advanced cancer, there was a substantial increase in early referrals to outpatient palliative care at a comprehensive cancer center. The increase in early referrals occurred mainly in tumor sites that have been included in trials of early palliative care. These results indicate that oncologists' referral practices can change if positive consequences of earlier referral are demonstrated. Future research should focus on demonstrating benefits of early palliative care for tumor sites that have tended to be omitted from early palliative care trials.
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http://dx.doi.org/10.1002/onco.13625DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8018311PMC
April 2021

Psychotherapeutic Approach for Advanced Illness: Managing Cancer and Living Meaningfully (CALM) Therapy.

Am J Psychother 2020 Dec 18;73(4):119-124. Epub 2020 Nov 18.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto (all authors); Department of Psychiatry (all authors) and Global Institute of Psychosocial, Palliative, and End-of-Life Care (Rodin), University of Toronto, Toronto.

With advances in medical treatment and an aging population, there is an increasing global burden of advanced and life-limiting illnesses. Individuals living with these conditions may experience substantial distress related to disease progression, changes in important roles and life goals, loss of meaning, and uncertainty about the future, but there has been limited evidence to inform their psychotherapeutic care. Managing cancer and living meaningfully (CALM) therapy is a brief, evidence-based, semistructured intervention that provides a framework to address practical issues, such as navigating the health care system and treatment decisions, and existential issues, including finding meaning and hope in the face of mortality. CALM has been shown to alleviate and prevent depression and to facilitate preparation for the end of life among patients with advanced cancer. It is being adapted to other life-threatening illnesses and different cultural contexts and health care settings. Advocacy is needed to support such approaches for individuals living with advanced and life-threatening illness.
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http://dx.doi.org/10.1176/appi.psychotherapy.20190050DOI Listing
December 2020

Effectiveness of a brief manualized intervention, Managing Cancer and Living Meaningfully (CALM), adapted to the Italian cancer care setting: Study protocol for a single-blinded randomized controlled trial.

Contemp Clin Trials Commun 2020 Dec 10;20:100661. Epub 2020 Oct 10.

Institute of Psychiatry, Department of Biomedical and Specialty Surgical Sciences, University of Ferrara, Ferrara, Italy.

Patients with advanced cancer suffer from psychosocial distress that may impair quality of life and that may be ameliorated by psychotherapeutic treatment. We describe here the methodology of a randomized controlled trial (RCT) to assess the effectiveness of a novel, brief, semi-structured psychotherapeutic intervention to reduce distress and increase well-being in patients with advanced or metastatic cancer. The intervention, called Managing Cancer and Living Meaningfully (CALM), was originally developed in Canada and we are now testing its Italian adaptation (CALM-IT). The study is a single-blinded phase III RCT with assessment at baseline, 3 and 6 months with two conditions: CALM-IT versus a nonspecific supportive intervention (SPI). Eligibility criteria include: ≥ 18 years of age; fluency in the Italian language; no cognitive deficit, and diagnosis of advanced or metastatic cancer with an expected survival of 12-18 months. CALM-IT includes up to 12 sessions, delivered over 6 months and covers 4 domains: i) Symptom Management and Communication with Health Care Providers; ii) Changes in Self and Relations with Close Others; iii) Sense of Meaning and Purpose; and iv) the Future and Mortality. The primary outcome is difference in severity of depressive symptoms between treatment arm and the primary endpoint is 6 months. The secondary endpoint is 3 months and secondary outcomes are: generalized anxiety, distress about dying and death, demoralization, spiritual well-being, attachment security, posttraumatic growth, communication with partners, quality of life, and satisfaction with clinical care. If shown to be effective, CALM-IT can be implemented nationally to relieve distress and to promote psychological well-being in patients with advanced cancer.
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http://dx.doi.org/10.1016/j.conctc.2020.100661DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7566943PMC
December 2020

Death-related distress in adult primary brain tumor patients.

Neurooncol Pract 2020 Oct 10;7(5):498-506. Epub 2020 Apr 10.

Virginia Commonwealth University, School of Medicine Department of Health Behavior and Policy, Richmond, Virginia.

Background: A diagnosis of cancer may increase mortality salience and provoke death-related distress. Primary brain tumor (PBT) patients may be at particular risk for such distress given the certainty of tumor progression, lack of curative treatments, and poor survival rates. This study is the first to examine the prevalence of death-related distress and its correlates in PBT patients.

Methods: Adult PBT patients (N = 105) enrolled in this cross-sectional study and completed the Death Distress Scale (subscales: Death Depression, Death Anxiety, Death Obsession), Generalized Anxiety Disorder-7, and Patient Health Questionnaire-9. Prevalence and predictors of death-related distress, and the relationships of demographic variables to clusters of distress, were explored.

Results: The majority of PBT patients endorsed clinically significant death-related distress in at least one domain. Death anxiety was endorsed by 81%, death depression by 12.5%, and death obsession by 10.5%. Generalized anxiety was the only factor associated with global death-related distress. Cluster analysis yielded 4 profiles: global distress, emotional distress, resilience, and existential distress. Participants in the resilience cluster were significantly further out from diagnosis than those in the existential distress cluster. There were no differences in cluster membership based on age, sex, or tumor grade.

Conclusions: PBT patients appear to have a high prevalence of death-related distress, particularly death anxiety. Further, 4 distinct profiles of distress were identified, supporting the need for tailored approaches to addressing death-related distress. A shift in clusters of distress based on time since diagnosis also suggest the need for future longitudinal assessment.
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http://dx.doi.org/10.1093/nop/npaa015DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7516120PMC
October 2020

Exit Music: The Experience of Music Therapy within Medical Assistance in Dying.

Healthcare (Basel) 2020 Sep 10;8(3). Epub 2020 Sep 10.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON M5G2M9, Canada.

Since the 2015 Canadian legalization of medical assistance in dying (MAiD), many Canadian music therapists have become involved in the care of those requesting this procedure. This qualitative study, the first of its kind, examines the experience of music therapy within MAiD, exploring lived experience from three perspectives: the patient, their primary caregiver, and the music therapist/researcher. Overall thematic findings of a hermeneutic phenomenological analysis of ten MAiD cases demonstrate therapeutically beneficial outcomes in terms of quality of life, symptom management, and life review. Further research is merited to continue an exploration of the role of music therapy in the context of assisted dying.
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http://dx.doi.org/10.3390/healthcare8030331DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551927PMC
September 2020

Efficacy of the Managing Cancer and Living Meaningfully (CALM) individual psychotherapy for patients with advanced cancer: A single-blind randomized controlled trial.

Psychooncology 2020 11 14;29(11):1895-1904. Epub 2020 Sep 14.

Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Objective: We aimed to determine whether the Managing Cancer and Living Meaningfully (CALM) therapy is superior to a non-manualized supportive psycho-oncological counselling intervention (SPI).

Methods: Adult patients with advanced cancer and ≥9 points on the PHQ-9 and/or ≥5 points on the DT were randomized to CALM or SPI. We hypothesized that CALM patients would report significantly less depression (primary outcome) on the BDI-II and the PHQ-9 6 months after baseline compared to SPI patients.

Results: From 329 eligible patients, 206 participated (61.2% female; age: M = 57.9 [SD = 11.7]; 84.5% UICC IV stage). Of them, 99 were assigned to CALM and 107 to SPI. Intention-to-treat analyses revealed significantly less depressive symptoms at 6 months than at baseline (P < .001 for BDI-II and PHQ-9), but participants in the CALM and SPI group did not differ in depression severity (BDI-II: P = .62, PHQ-9: P = .998). Group differences on secondary outcomes were statistically not significant either.

Conclusions: CALM therapy was associated with reduction in depressive symptoms over time but this improvement was not statistically significant different than that obtained within SPI group.
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http://dx.doi.org/10.1002/pon.5521DOI Listing
November 2020

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

Palliat Med 2020 12 12;34(10):1436-1446. Epub 2020 Aug 12.

Department of Supportive Care, Princess Margaret Cancer Centre (University Health Network), Toronto, ON, Canada.

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 ( = 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 ( = 7.09,  = 4.59) and females ( = 7.66,  = 5.01), (303) = 1.01,  = 0.314. Greater general anxiety and number of cancer symptoms were associated with depressive symptoms in both males and females. Feeling like a failure ( = 0.192), less death anxiety ( = -0.188), severity of cancer symptoms ( = 0.166), and older age ( = 0.161) were associated with depressive symptoms only in males, while disheartenment ( = 0.216) and worse physical functioning ( = 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.
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http://dx.doi.org/10.1177/0269216320947961DOI Listing
December 2020

COVID-19, palliative care and public health.

Eur J Cancer 2020 09 9;136:95-98. Epub 2020 Jul 9.

Population Health Sciences, Bristol Medical School, Bristol, United Kingdom. Electronic address:

The lack of integration between public health approaches, cancer care and palliative and end-of-life care in the majority of health systems globally became strikingly evident in the context of the coronavirus disease 2019 (COVID-19) pandemic. At the same time, the collapse of the boundaries between these domains imposed by the pandemic created unique opportunities for intersectoral planning and collaboration. While the challenge of integration is not unique to oncology, the organisation of cancer care and its linkages to palliative care and to global health may allow it to be a demonstration model for how the problem of integration can be addressed. Before the pandemic, the large majority of individuals with cancer in need of palliative care in low- and middle-income countries and the poor or marginalised in high-income countries were denied access. This inequity was highlighted by the COVID-19 pandemic, as individuals in impoverished or population-dense settings with weak health systems have been more likely to become infected and to have less access to medical care and to palliative and end-of-life care. Such inequities deserve attention by government, financial institutions and decision makers in health care. However, there has been no framework in most countries for integrated decision-making that takes into account the requirements of public health, clinical medicine and palliative and end-of-life care. Integrated planning across these domains at all levels would allow for more coordinated resource allocation and better preparedness for the inevitability of future systemic threats to population health.
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http://dx.doi.org/10.1016/j.ejca.2020.05.023DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7833837PMC
September 2020

Validation of the 7-item Functional Assessment of Cancer Therapy-General (FACT-G7) as a short measure of quality of life in patients with advanced cancer.

Cancer 2020 08 27;126(16):3750-3757. Epub 2020 May 27.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.

Background: Assessing quality of life is essential for individuals with advanced cancer, but lengthy assessments can be burdensome. The authors investigated the psychometric characteristics of the FACT-G7, a 7-item quality-of-life measure derived from the Functional Assessment of Cancer Therapy-General (FACT-G) scale, in advanced cancer.

Methods: Data were obtained from outpatients with advanced cancer who were enrolled in a randomized controlled trial of early palliative care. At baseline, 228 intervention participants and 233 control participants (N = 461) completed the FACT-G and measures of symptom severity, quality of life near the end of life, problematic medical communication, and satisfaction with care. Follow-up measures were administered monthly for 4 months.

Results: The FACT-G7 showed good internal consistency (Cronbach α = .72-.80), and its single-factor structure was supported. It correlated strongly with the FACT-G total, physical, and functional indices and with symptom severity (absolute r = 0.73-0.92); more moderately with the FACT-G emotional index and with symptom impact and preparation for the end of life (r = .40-.71); and least with the FACT-G social/family index and with relationship with health care provider, life completion, problematic medical communication, and care satisfaction measures (absolute r = .26-.44). Eastern Cooperative Oncology Group performance status groups differed on FACT-G7 scores, as expected (all P < .001). Improvements in FACT-G7 scores in the intervention group compared with the control group at 3-month (P = .049) and 4-month (P = .034) follow-up supported responsiveness to change and somewhat greater sensitivity than the FACT-G scores.

Conclusions: The FACT-G7 is a valid, brief measure particularly of the physical and functional facets of quality of life. It may enable rapid quality-of-life assessments in patients with advanced cancer.
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http://dx.doi.org/10.1002/cncr.32981DOI Listing
August 2020

The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach.

BMC Palliat Care 2020 Apr 16;19(1):49. Epub 2020 Apr 16.

Department of Palliative Medicine, Medical Faculty, University of Cologne, Kerpener Str. 62, 50937, Cologne, Germany.

Background: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress.

Methods: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria.

Results: 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was "proactively addressing desire to die".

Conclusions: We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically - based on evidence, patients' views and consensus among professional experts.

Trial Registration: The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).
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http://dx.doi.org/10.1186/s12904-020-00548-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7164236PMC
April 2020

Application of Managing Cancer and Living Meaningfully (CALM) in Advanced Cancer Patients: An Italian Pilot Study.

Psychother Psychosom 2020 19;89(6):402-404. Epub 2020 Mar 19.

Institute of Psychiatry, Department of Biomedical and Specialty Surgical Sciences, University of Ferrara, Ferrara, Italy,

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http://dx.doi.org/10.1159/000505875DOI Listing
August 2021

Death Anxiety in Patients With Metastatic Non-Small Cell Lung Cancer With and Without Brain Metastases.

J Pain Symptom Manage 2020 08 5;60(2):422-429.e1. Epub 2020 Mar 5.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada. Electronic address:

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.

Objectives: To identify psychological, physical, and disease-related (including brain metastases and cognitive impairment) factors associated with death anxiety in metastatic non-small cell lung cancer (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% females; 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 patients with mNSCLC 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.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.02.023DOI Listing
August 2020

Health Care Professionals' Reports of Cancer Pain Cues Among Older People With Delirium: A Qualitative-Quantitative Content Analysis.

J Pain Symptom Manage 2020 07 10;60(1):28-36.e1. Epub 2020 Feb 10.

School of Kinesiology and Health Science, York University, Toronto, Ontario, Canada; Department of Anesthesia and Pain Management, University Health Network, Toronto, Ontario, Canada; Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada; Department of Anesthesia, University of Toronto, Toronto, Ontario, Canada; Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada; Department of Anesthesia and Pain Management, Mount Sinai Hospital, Sinai Health System, Toronto, Ontario, Canada. Electronic address:

Context: Health care professionals (HCPs) currently judge pain presence and intensity in patients with delirium despite the lack of a valid, standardized assessment protocol. However, little is known about how they make these judgments. This information is essential to develop a valid and reliable assessment tool.

Objectives: To identify pain cues that HCPs report to judge pain in patients with delirium and to examine whether the pain cues differed based on patient cognitive status and delirium subtype.

Methods: Mixed qualitative-quantitative design. Doctors and nurses were recruited. All participants provided written informed consent, and before the recorded interview, demographic information was collected; then participants were asked to describe their practices and beliefs regarding pain assessment and management with older patients who are cognitively intact and patients with delirium. Interviews were transcribed verbatim and coded for pain cues. Coded data were imported into SPSS software (IBM SPSS Statistics Version 24; IBM Corporation, Armonk, NY) to conduct bivariate analyses.

Results: The pain cue self-report was stated more often for intact than for delirium patients (χ [1; N = 106] = 22.56; P < 0.001). HCPs stated yelling (χ [2; N = 159] = 11.14; P = 0.004), when describing pain in hyperactive than in hypoactive and mixed delirium patients; and significantly more HCPs stated grimace (χ [2; N = 159] = 6.88; P = 0.03), when describing pain in hypoactive than hyperactive and mixed patients.

Conclusion: This study outlines how HCPs conduct pain assessment in patients who are delirious and, also, identifies pain behavior profiles for the subtypes of delirium.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.01.021DOI Listing
July 2020

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

Psychooncology 2020 05 26;29(5):833-840. Epub 2020 Feb 26.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.

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 (N = 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.
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http://dx.doi.org/10.1002/pon.5354DOI Listing
May 2020

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

J Clin Oncol 2020 03 5;38(9):885-904. Epub 2020 Feb 5.

Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.

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.
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http://dx.doi.org/10.1200/JCO.19.00058DOI Listing
March 2020

Readiness for delivering early palliative care: A survey of primary care and specialised physicians.

Palliat Med 2020 01 18;34(1):114-125. Epub 2019 Dec 18.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.

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  < 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%,  < 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.
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http://dx.doi.org/10.1177/0269216319876915DOI Listing
January 2020
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