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Children and adults with advanced cardiac or respiratory disease may benefit from specialized palliative care (SPC), but there has been little SPC research in this area.To explore pediatric cardiologists' and respirologists' (pediatric clinicians) beliefs about and referral practices to SPC and compare these results to adult cardiologists and respirologists (adult clinicians).Pediatric and adult clinicians were sent a survey exploring SPC referral practices and beliefs. Responses were summarized with descriptive statistics. Pediatric and adult clinicians' responses were compared using Pearson's chi-square test.The response rate was 56% (989/1759); 9% (87/989) were pediatric clinicians. Pediatric clinicians were more likely than adult clinicians to be female, work in an academic center, and experience fewer patient deaths (P0.001). Pediatric clinicians reported better access to SPC clinical nurse specialists, spiritual care specialists and bereavement counselors (P0.001), while adult clinicians reported better access to palliative care units (P0.001). Pediatric clinicians referred to SPC earlier, while adult clinicians tended to refer after disease directed therapies were stopped (P0.001). More than half of all clinicians felt patients had negative perceptions of the phrase "palliative care". Although most clinicians were satisfied with SPC quality (73-82%), fewer adult clinicians were satisfied with SPC availability (74 vs. 47%; P0.001). Fewer pediatric clinicians felt that SPC prioritized oncology patients (13 vs. 53%; P0.001).There are important differences between pediatric and adult clinicians' beliefs about and referral practices to SPC. This may reflect unique features of pediatric diseases, provider characteristics, care philosophies, or service availability.

Background: Palliative care is well suited to support patients hospitalized with COVID-19, but integration into care has been variable and generally poor. Aim: To understand barriers and facilitators of palliative care integration for hospitalized patients with COVID-19. Methods: Internists, Intensivists and palliative care physicians completed semi-structured interviews about their experiences providing care to patients with COVID-19. Results were analysed using thematic analysis. Results: Twenty-three physicians (13 specialist palliative care, five intensivists, five general internists) were interviewed; mean ± SD age was 42 ± 11 years and 61% were female. Six thematic categories were described including: patient and family factors, palliative care knowledge, primary provider factors, COVID-19 specific factors, palliative care service factors, and leadership and culture factors. Patient and family factors included patient prognosis, characteristics that implied prognosis (i.e., age, etc.), and goals of care. Palliative care knowledge included confidence in primary palliative care skills, misperception that COVID-19 is not a ‘palliative diagnosis’, and the need to choose quantity or quality of life in COVID-19 management. Primary provider factors included available time, attitude, and reimbursement. COVID-19 specific factors were COVID-19 as an impetus to act, uncertain illness trajectory, treatments and outcomes, and infection control measures. Palliative care service factors were accessibility, adaptability, and previous successful relationships. Leadership and culture factors included government-mandated support, presence at COVID planning tables, and institutional and unit culture. Conclusion: The study findings highlight the need for leadership support for formal integrated models of palliative care for patients with COVID-19, a palliative care role in pandemic planning, and educational initiatives with primary palliative care providers.

ObjectivesMedical assistance in dying (MAiD) is legal in an increasing number of countries, but there are concerns that its availability may compromise access to palliative care. We assessed public interest in MAiD, palliative care, both, or neither, and examined characteristics associated with this interest.MethodsWe surveyed a representative sample of the adult Canadian public, accessed through a panel from May to June 2019. Weighted generalised multinomial logistic regression analyses were used to determine characteristics associated with interest in referral to palliative care, MAiD, or both, in the event of diagnosis with a serious illness.ResultsOf 1362 participants who had heard of palliative care, 611 (44.8% weighted (95% CI 42.1% to 47.5%)) would be interested in both MAiD and palliative care, 322 (23.9% (95% CI 21.5% to 26.2%)) palliative care alone, 171 (12.3% (95% CI 10.5% to 14.1%)) MAiD alone and 258 (19.0% (95% CI 16.9% to 21.2%)) neither. In weighted multinomial logistic regression analyses, interest in both MAiD and palliative care (compared with neither) was associated with better knowledge of the definition of palliative care, older age, female gender, higher education and less religiosity; interest in palliative care alone was associated with better knowledge of the definition of palliative care, older age, female gender and being married/common law; interest in MAiD alone was associated with less religiosity (all pConclusionsThere is substantial public interest in potential referral to both MAiD and palliative care. Simultaneous availability of palliative care should be ensured in jurisdictions where MAiD is legal, and education about palliative care should be a public health priority.

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

BackgroundAlthough outpatient palliative care clinics (OPCCs) provide a venue for early, pre-emptive referral to palliative care on a routine basis, some patients will continue to require urgent referrals. The purpose of this study was to characterise these urgent referrals to determine whether they reflect clinical need or convenience.MethodsWe retrospectively compared new patients in an OPCC who were seen urgently versus those seen at routine appointments. Descriptive statistics compared the two groups in terms of clinical characteristics, referring teams, symptoms, performance status and outcomes. Logistic regression was used to identify factors associated with urgent referral to the OPCC. Overall survival was compared using the log-rank test.ResultsBetween January 2016 and December 2017, a total of 113 urgent referrals were reviewed in the OPCC; these were compared with a random sample of 217 routine referrals. Patients seen urgently were more likely to be referred by surgical oncology, and to report worse symptom scores for pain (p=0.0007), tiredness (p=0.02), well-being (p=0.001), constipation (p=0.02) and sleep (p=0.01). More patients seen urgently required direct admission to hospital following the visit (17.7% vs 0.9%, pConclusionsCompared with routine referrals, new patients seen urgently in the OPCC had higher symptom burden, shorter median survival and a greater chance of direct admission to hospital. Palliative care clinics should consider how best to accommodate urgent referrals.

PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.

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 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.

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.

Background: In 2016, Kavalieratos and colleagues performed a systematic review of randomized clinical trials (RCTs) of palliative care (PC) interventions. The majority of RCTs included focused on oncology, with fewer in heart failure (HF). Cancer patients' often predictable decline differs from the variable illness trajectories of HF; however, both groups experience similar palliative needs, and accordingly, PC in HF continues to grow. Objective: To investigate if PC interventions differ between cancer and HF patients. Design: In this secondary analysis, we compare PC interventions for cancer and HF patients evaluated in the 2016 systematic review. Settings/Subjects: We included a total of 25 trials, 19 of which included 3730 cancer patients, and 6 of which included 1049 HF patients (mean age, 67 years). Measurements: We compared the following five characteristics among included trials: PC domains addressed, duration, location, provider specialization, and measured outcomes. Results: The content of the cancer and HF interventions was similar. HF interventions tended to include more home-based (50% vs. 37%) and specialty PC interventions (67% vs. 47%), although these results did not reach statistical significance. Both cancer and HF interventions favored longer durations (i.e., more than one month; 79% and 67%). No HF intervention RCTs included caregiver outcomes, whereas 32% of cancer interventions did. Conclusions: There were no substantial differences in content of cancer and HF interventions, although the latter tended to be delivered by PC specialists at home. There is a need for scalable interventions that incorporate the needs and preferences of individual patients, regardless of diagnosis.

BackgroundPatients with advanced cancer are increasingly discharged from inpatient settings following focused symptom management admissions. Thromboprophylaxis (TP) is recommended for patients with cancer admitted to acute care settings; less is known about TP use in palliative care (PC) settings. This study explored the opinions of Canadian medical oncologists (MO) and PC physicians regarding the use of TP for inpatients with advanced cancer.MethodsA fractional factorial survey designed to evaluate the impact of patient factors (age, clinical setting, reason for admission, pre-admission performance status (Eastern Cooperative Oncology Group; ECOG), and risk of bleeding on anticoagulation) and physician demographics on recommending TP was administered by email to Canadian MO and PC physicians. Each respondent received eight vignettes randomly selected from a set of 32. Hierarchical regression was used to evaluate the odds of prescribing TP adjusted for patient factors.Results606 MO and 491 PC physicians were surveyed; response rates were 11.1% and 15.0%, respectively. MO were predominantly male (59.7%); PC female (60.3%); most worked in academic environments (90.3% MO; 73.9% PC). Multivariable hierarchical logistic regression demonstrated that all patient factors except age were associated with prescribing TP (ORs range: from 1.34 (95% CI 1.01 to 1.77) for good ECOG, to 2.53 (95% CI 1.9 to 3.37), for reversible reason for admission). Controlling for these factors, medical specialty was independently associated with recommending TP (OR for MO 2.09 (95% CI 1.56 to 2.8)).ConclusionsMO have higher odds of recommending TP for inpatients with advanced cancer than PC physicians. Further research exploring the drivers of these differing practices is warranted.

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.” 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. 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. 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.

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.

Context Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life. Objective To explore patient and caregiver understanding and valuation of “continuity of care” while transitioning from an in-hospital to a home-based palliative care team. Methods Longitudinal qualitative design using semistructured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using thematic analysis within a postpositivist framework. Thirty-nine participants (18 patients, seven caregivers, and seven patient-caregiver dyads) were recruited from two acute care hospitals, wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care. Results Patients had a mean age of 68 years, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 years and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced, as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers. Conclusion Patients' and their caregivers’ valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.

BACKGROUND Health care providers' (HCPs) communication with cancer patients provides both information and support. Younger patient age and greater difficulty accepting support (attachment security) have been linked to poorer communication experiences with HCPs. The present secondary data analysis examined the impact of age group and attachment security on perceived communication problems with HCPs in adults with acute leukemia (AL). METHODS The sample included 95 younger (age

Context Clinicians often rely on documentation to relay information, and this remains the mainstay of interprofessional communication regarding patient care. However, there has been scant research focused on clinicians' documentation of dying in hospital and how this is communicated to other team members in patient charting. Objectives To understand the language used to describe the deterioration and death of patients in an acute academic tertiary care center and to identify whether patient diagnoses or palliative care (PC) involvement was associated with clearer descriptions of this process. Methods We conducted a retrospective chart review of the final admission of 150 patients who died on an inpatient internal medicine unit. Conventional and summative content analysis was performed of the language used to describe, either directly or indirectly, that the patient's death was imminent. Results Of the 150 deaths, the median age was 79.5 (range 22–101), 58% were males, and 69% spoke English. A total of 45% of deaths were from cancer, and 66% occurred with prior PC team involvement. There was no documentation of the dying process in 18 (12%) charts. In the remainder, clinicians' documentation of imminent death fell into three categories: 1) identification of the current state using specific labels; for example, dying (24.7%) or end of life (15.3%), or less specific language, unwell or doing poorly (6.0%); 2) predicting the future state using specific or more vague predictions; for example, hours to days (7.3%) or poor or guarded prognosis (26.0%); and 3) using care provided to the patient to imply patient status; for example, PC (49.3%) or comfort care (28.7%). PC involvement, but not a malignant diagnosis, was associated with more frequent use of specific language to describe the current state (P = 0.004) or future state (P = 0.02). Conclusion Death and dying in hospital is inadequately documented and often described using unclear and vague language. PC involvement is associated with clearer language to describe this process.

Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers.Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP).Semistructured qualitative interviews were conducted with 61 bereaved caregivers.Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures.In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data.Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes "contact reflects caring," "contact offers support," and "contact facilitates closure" were prominent among those who were contacted. "Contact is a courtesy," "contact is not always necessary," and "caregiver-initiated contact" were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported.Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers.

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.

Performance status measures are increasingly completed by patients in outpatient cancer settings, but are not well validated for this use.We assessed performance of a patient-reported functional status measure (PRFS, based on the Eastern Cooperative Oncology Group [ECOG]), compared with the physician-completed ECOG, in terms of agreement in ratings and prediction of survival.Patients and physicians independently completed five-point PRFS (lay version of ECOG) and ECOG measures on first consultation at an oncology palliative care clinic. We assessed agreement between PRFS and ECOG using weighted Kappa statistics, and used linear regression to determine factors associated with the difference between PRFS and ECOG ratings. We used the Kaplan-Meier method to estimate the patients' median survival, categorized by PRFS and ECOG, and assessed predictive accuracy of these measures using the C-statistic.For the 949 patients, there was moderate agreement between PRFS and ECOG (weighted Kappa 0.32; 95% CI: 0.28-0.36). On average, patients' ratings of performance status were worse by 0.31 points (95% CI: 0.25-0.37, P 0.0001); this tendency was greater for younger patients (P = 0.002) and those with worse symptoms (P 0.0001). Both PRFS and ECOG scores correlated well with overall survival; the C-statistic was higher for the average of PRFS and ECOG scores (0.619) than when reported individually (0.596 and 0.604, respectively).Patients tend to rate their performance status worse than physicians, particularly if they are younger or have greater symptom burden. Prognostic ability of performance status could be improved by using the average of patients and physician scores.

Purpose The symptom burden of acute myeloid leukemia (AML) and its treatment can accelerate physical deconditioning and impair mobility and quality of life. In the present study, we explore the subjective experience of functional capacity in people living with AML. Methods A secondary qualitative analysis was performed on a subset of interviews (n = 21) obtained from an observational cohort study of people with acute leukemia. Conventional content analysis was employed to identify key themes and concepts. Results Participants valued their physical function to the extent that it was required to pursue personally meaningful activities and interests. We identified Meaningful Activity as an overarching goal of participants. Three interrelated themes captured the obstacles participants reported facing when attempting to realize this goal: Compromised Body, Threatened Identity, and Shrinking World. Adaptation was common across themes, representing the strategies employed to overcome such challenges. Themes were consistent across participants, despite the variability in disease states at the time of the interview. Conclusions Dynamic interactions between physical, psychological, and environmental factors affect the pursuit and achievement of meaningful activity among people living with AML. It may be important to consider personal incentives when designing interventions for physical rehabilitation in this patient population.

Objective Acute leukemia (AL) is associated with an immediate threat to life, an unpredictable clinical course, and substantial physical suffering. Traumatic stress symptoms that may meet criteria for acute stress disorder (ASD) may be common and disabling in this context, but have received little clinical attention. We investigated the incidence over time and risk factors for traumatic stress symptoms and ASD in the 3 months following diagnosis or relapse of AL. Methods Individuals with AL were recruited at a tertiary cancer center in Canada within one month of diagnosis or relapse. Participants (N = 230) completed self-report measures, including the Stanford Acute Stress Reaction Questionnaire, at baseline and monthly over 3 months. The incidence of traumatic stress symptoms over time was examined, and a generalized logistic model was used to identify factors associated with ASD. Results Participants were 60% male, with a mean age of 48.9 ± 15.2 years. Symptoms of ASD were identified on ≥1 assessment over the study period in 24.4% of participants at baseline and in an additional 12.6% at a subsequent follow-up. Of these, 55.3% reported symptoms on ≥2 assessments. ASD was associated with having young children, being unmarried, acute lymphocytic leukemia, and greater physical symptom burden. Persistent or recurrent ASD was associated with female sex, acute lymphocytic leukemia, greater attachment anxiety, less spiritual well-being, and less satisfactory patient-clinician communication. Conclusions Symptoms of ASD are common and often persist or recur following diagnosis or relapse of AL. Research is urgently needed to determine the impact of interventions to prevent and treat psychological distress in this population.

Objectives Fear of death and dying is common in patients with advanced cancer, but can be difficult to address in clinical conversations. We aimed to show that the experience of death anxiety may be deconstructed into a network of specific concerns and to provide a map of their interconnections to aid clinical exploration. Methods We studied a sample of 382 patients with advanced cancer recruited from outpatient clinics at the Princess Margaret Cancer Centre, Toronto, Canada. Patients completed the 15-item Death and Dying Distress Scale (DADDS). We used item ratings to estimate a regularised partial correlation network of death and dying-related concerns. We calculated node closeness-centrality, clustering and global network characteristics. Results Death-related anxieties were highly frequent, each associated with at least moderate distress in 22%–55% of patients. Distress about ‘Running out of time’ was a central concern in the network. The network was organised into two areas: one about more practical fears concerning the process of dying and another about more psychosocial or existential concerns including relational problems, uncertainty about the future and missed opportunities. Both areas were yet closely connected by bridges which, for example, linked fear of suffering and a prolonged death to fear of burdening others. Conclusions Patients with advanced cancer may have many interconnected death-related fears that can be patterned in individual ways. The bridging links between more practical and more psychosocial concerns emphasise that the alleviation of death anxiety may require interventions that integrate symptom management, advance care planning and psychological treatment approaches.

Pain-related stoicism and cautiousness are theorized to be more prevalent in older than younger patients and to lead to greater pain under-reporting and consequently inadequate pain management in older patients. The Pain Attitudes Questionnaire-Revised (PAQ-R), which measures 5 pain-related stoicism (fortitude, concealment, superiority) and cautiousness (self-doubt, reluctance) factors in chronic pain, can help test this hypothesis in advanced cancer but requires validation. We conducted a psychometric evaluation of the PAQ-R in 155 younger (younger than 60 years) and 114 older (aged 60 years and older) patients with advanced cancer. Participants showed disagreement with self-doubt items and floor effects with the subscale. Confirmatory factor analyses revealed good fit of the PAQ-R's 5 factors to younger and older groups' data but collinearity between fortitude and concealment. Multisample confirmatory factor analyses supported partial scalar invariance between age groups. Few hypothesized age-related differences were observed. Younger patients reported higher superiority scores than older patients. Whereas older patients showed greater fortitude and superiority with lower average pain intensity, younger patients showed greater concealment or fortitude with greater worst and average pain intensity. Furthermore, whereas older patients displayed greater superiority with lower interference in relations with others, younger patients displayed greater concealment and superiority with greater interference in walking ability and greater concealment and self-doubt with more interference in relations with others. Cross-validation of the PAQ-R's factor structure and identification of pathways to the factors and effect on pain-related outcomes using multivariate approaches are warranted. Perspective This article presents the psychometric properties of a measure of 2 particular pain-related attitudes. The measure can help clarify whether these attitudes adversely influence pain reporting in older patients with advanced cancer as hypothesized and, in turn, explain the inadequate pain management frequently reported with this clinical group.

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, 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.

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 α = 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 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.

Background: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. Aim: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Design: Qualitative grounded theory study using individual interviews. Setting/participants: The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Results: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. Conclusion: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.

BackgroundManaging Cancer And Living Meaningfully (CALM) is a brief individual psychotherapy for patients with advanced cancer. In an intervention-only phase 2a trial, CALM showed promising results, leading to the present 2b pilot, which introduces procedures for randomisation and improved rigour in preparation for a phase 3 randomised controlled trial (RCT).AimsTo test trial methodology and assess feasibility of a confirmatory RCT.DesignA parallel-arm RCT (intervention vs usual care) with 3 and 6-month follow-ups. Assessment of feasibility included rates of consent, randomisation, attrition, intervention non-compliance and usual care contamination. Primary outcome: depressive symptoms (Patient Health Questionnaire-9; PHQ-9). Secondary outcomes: major depressive disorder (MDD), generalised anxiety, death anxiety, spiritual well-being, attachment anxiety and avoidance, self-esteem, experiential avoidance, quality of life and post-traumatic growth. Bayesian conjugate analysis was used in this low-powered setting.Setting/participants60 adult patients with advanced cancer from the Princess Margaret Cancer Centre.ResultsRate of consent was 32%, randomisation 78%, attrition 25%, non-compliance 37% and contamination 17%. There was support for potential treatment effects on: PHQ-9, OR=1.48, 95% Credible Interval (CRI.95) (0.65, 3.38); MDD, OR=1.56, CRI.95(0.50, 4.84); attachment anxiety, OR=1.72, CRI.95(0.73, 4.03); and attachment avoidance, OR=1.58, CRI.95(0.67, 3.71). There was no support for effects on the seven remaining secondary outcomes.ConclusionsA phase 3 CALM RCT is feasible and should aim to detect effect sizes of d=0.40, with greater attention to issues of compliance and contamination.Trial registration numberNCT02353546.

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.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.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).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 Felt security in close relationships may affect individual adaptation responses to existential threat in severe illness. We examined the contribution of attachment security to demoralization, a state of existential distress involving perceived pointlessness and meaninglessness in advanced cancer. Method A mixed cross-sectional sample of 382 patients with advanced cancer (mean age 59, 60% female) was recruited from outpatient oncology clinics. Participants completed self-report measures of attachment security, demoralization, depression, and physical symptom burden. We used multiple linear regression to analyze the association between attachment security and demoralization, controlling for demographic factors and symptom burden and tested whether attachment security moderated the association of symptom burden with demoralization. Separate analyses compared the contribution of the dimensions of attachment anxiety and attachment avoidance. Results The prevalence of clinically relevant demoralization was 35%. Demoralization was associated with lower attachment security (β = −0.54, 95%CI: −0.62 to 0.46). This effect was empirically stronger for attachment anxiety (β = 0.52, 95%CI: 0.44 to 0.60) compared to attachment avoidance (β = 0.36, 95%CI: 0.27 to 0.45). Attachment security also significantly moderated the association of physical symptom burden with demoralization, such that with less attachment security, there was a stronger association between symptom burden and demoralization. Conclusion Attachment security may protect from demoralization in advanced cancer. Its relative lack, particularly on the dimension of attachment anxiety, may limit adaptive capacities to deal with illness burden and to sustain morale and purpose in life. An understanding of individual differences in attachment needs can inform existential interventions for severely ill individuals.

Although timely palliative care is recommended for patients with advanced cancer, referrals to palliative care services are often late.To identify factors associated with early referral to an oncology palliative care clinic and to describe symptom severity according to timing of referral.We conducted a retrospective review of 337 patients with advanced cancer referred to outpatient palliative care at a comprehensive cancer center. We gathered data related to patient demographics, diagnosis, and referral. Timing of referral was categorized as early (12 months before death), intermediate (6-12 months before death), or late (6 months before death). Ordinal logistic regression was used to determine factors related to referral timing, and the Kruskal-Wallis test to determine symptom severity in each referral timing category.Of the 337 patients, 232 (69%) referrals were late, 60 (18%) intermediate, and 45 (13%) early. On multivariable analysis, earlier referral was associated with earlier primary cancer diagnosis (p = 0.004), and referral for pain and symptom management (p = 0.001). Patients who were referred late had worse overall Edmonton Symptom Assessment System distress scores, as well as worse tiredness, nausea, drowsiness, appetite, and wellbeing (all p ≤ 0.001). Severity of pain, shortness of breath, anxiety, and depression did not differ based on time of referral.A longer disease course and referral for symptom management were associated with earlier referral, whereas overall symptom burden was higher for late referrals. Further research is required on combining symptom screening with timely referral to improve symptom management in advanced cancer.

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 The objective of this study was 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 four to six months after patient's 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 of more than one week (72.21 ± 9.64) than for those with a shorter LOS (60.38 ± 11.92) (P Conclusion 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 of more than one week may be due to better clinical status on admission and/or longer duration of time that is needed to achieve optimal outcomes.

Acute palliative care units (APCUs) admit patients with cancer for symptom control, transition to community palliative care units or hospice (CPCU/H), or end-of-life care. Prognostication early in the course of admission is crucial for decision-making. We retrospectively evaluated factors associated with patients’ discharge disposition on an APCU in a cancer center. We evaluated demographic, administrative, and clinical data for all patients admitted to the APCU in 2015. Clinical data included cancer diagnosis, delirium screening, and Edmonton Symptom Assessment System (ESAS) symptoms. An ESAS sub-score composed of fatigue, drowsiness, shortness of breath, and appetite (FDSA) was also investigated. Factors associated with patients’ discharge disposition (home, CPCU/H, died on APCU) were identified using three-level multinomial logistic regression. Among 280 patients, the median age was 65.5 and median length of stay was 10 days; 155 (55.4%) were admitted for symptom control, 65 (23.2%) for transition to CPCU/H, and 60 (21.4%) for terminal care. Discharge dispositions were as follows: 156 (55.7%) died, 63 (22.5%) returned home, and 61 (21.8%) were transferred to CPCU/H. On multivariable analysis, patients who died were less likely to be older (OR 0.97, p = 0.01), or to be admitted for symptom control (OR 0.06, p

The Edmonton Symptom Assessment System (ESAS) measures the severity of nine symptoms. Constipation and sleep disturbance are common in patients with cancer, but are not currently included in the ESAS.To validate the numerical rating scale (NRS) versions of ESAS and its revised version (ESAS-r), with the additional symptoms of constipation and sleep (CS), and to assess patient preference for either version.Outpatients with advanced cancer (N = 202) completed three assessments during a single clinic visit: ESAS-CS, and an added time window of "past 24 hours"; ESAS-r-CS, with a time window of "now" and symptom definitions; and the Memorial Symptom Assessment Scale (MSAS). Internal consistency was calculated using Cronbach's alpha. Paired t-tests compared ESAS-CS and ESAS-r-CS scores; these were correlated with MSAS using Spearman correlation coefficients. Test-retest reliability at 24 hours was assessed in 26 patients.ESAS-CS and ESAS-r-CS total scores correlated well with total MSAS (Spearman's rho 0.62 and 0.64, respectively). Correlation of individual symptoms with MSAS symptoms ranged from 0.54-0.80 for ESAS-CS and 0.52-0.74 for ESAS-r-CS. Although participants preferred the ESAS-r-CS format (42.8% vs. 18.6%) because of greater clarity and understandability, the "past 24 hours" time window (52.8%) was favored over "now" (21.3%). Shortness of breath and nausea correlated better for the "past 24 hours" time window (0.8 and 0.72 vs. 0.74 and 0.64 in ESAS-r-CS, respectively). The 24-hour test-retest of the ESAS-CS demonstrated acceptable reliability (intraclass correlation coefficient = 0.69).The ESAS-CS and ESAS-r-CS NRS versions are valid and reliable for measuring symptoms in this population of outpatients with advanced cancer. Although the ESAS-r-CS was preferred, patients favored the 24-hour time window of the ESAS-CS, which also may best characterize fluctuating symptoms.

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 (β = 0.71), and demoralization was positively associated with symptom burden (β = 0.31) and negatively associated with social relatedness (β = −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.

Palliative care (PC) concurrent with usual oncology care is now the standard of care that is recommended for any patient with advanced cancer to begin within 8 weeks of diagnosis on the basis of evidence-driven national clinical practice guidelines; however, there are not enough interdisciplinary palliative care teams to provide such care. How and what can an oncology office incorporate into usual care, borrowing the tools used in PC randomized clinical trials (RCTs), to improve care for patients and their caregivers? We reviewed the multiple RCTs for common practical elements and identified methods and techniques that oncologists can use to deliver some parts of concurrent interdisciplinary PC. We recommend the standardized assessment of patient-reported outcomes, including the evaluation of symptoms with such tools as the Edmonton or Memorial Symptom Assessment Scales, spirituality with the FICA Spiritual History Tool or similar questions, and psychosocial distress with the Distress Thermometer. All patients should be assessed for how they prefer to receive information, their current understanding of their situation, and if they have considered some advance care planning. Approximately 1 hour of additional time with the patient is required each month. If the oncologist does not have established ties with spiritual care and social work, he or she should establish these relationships for counseling as required. Caregivers should be asked about coping and support needs. Oncologists can adapt PC techniques to achieve results that are similar to those in the RCTs of PC plus usual care compared with usual care alone. This is comparable to using data from RCTs of trastuzamab or placebo, adopting what was used in the RCTs without modification or dilution.

Purpose: To describe prevalence and characteristics associated with family physician and general practitioner (FP/GP) provision of home palliative care (HPC). Methods: We surveyed FP/GPs in an urban health region of Ontario, Canada, to determine their current involvement in HPC, the nature of services provided, and perceived barriers and enablers. Results: A total of 1439 surveys were mailed. Of the 302 FP/GP respondents, 295 provided replies regarding engagement in HPC: 101 of 295 (33%) provided HPC, 76 (26%) were engageable with further support, and 118 (40%) were not engageable regardless of support. The most substantial barrier was time to provide home visits (81%). Engaged FP/GPs were most likely to be working with another physician providing HPC ( P < .0001). Engageable FP/GPs were younger ( P = .007) and placed greater value on improved remuneration ( P < .001) than the other groups. Nonengageable physicians were most likely to view time as a barrier ( P < .0001) and to lack interest in PC ( P = .03). Conclusion: One-third of FP/GPs provide HPC. A cohort of younger physicians could be engageable with adequate support. Integrated practices including collaboration with specialist PC colleagues should be encouraged and supported.

Age differences are not evident in pain-related stoicism and cautiousness in people with cancer pain. Little is known about the factors associated with these pain-related attitudes or age-related patterns in these associations. The present cross-sectional study investigated the biopsychosocial correlates of the attitudes in younger and older patients with advanced cancer. Pain-related stoicism (fortitude, concealment, superiority) and cautiousness (self-doubt, reluctance) were assessed using the Pain Attitudes Questionnaire-Revised (PAQ-R). Participants, 155 younger (younger than 60 years old) and 114 older (60 years old or older) patients with advanced cancer completed the PAQ-R and measures of sociodemographic and medical characteristics, pain intensity, cognitive-affective pain-related responses, physical functioning, psychological distress and well-being, and psychosocial functioning. Backwards regression analyses identified correlates for each PAQ-R factor separately for younger and older patients. Activity engagement was a frequent correlate, but its relationship with concealment was the only association common to both age groups. Younger and older patients exhibited different avoidance-related constructs suggesting relational challenges in the former group (avoidant attachment) and intrapersonal fear in the latter (cognitive avoidance). Medical correlates also showed age differences: younger patients showed symptom-focused correlates, whereas older patients showed aging-related correlates. Findings support a biopsychosocial framework of cancer-pain adaptation incorporating a lifespan-developmental perspective. Perspective To our knowledge, this article is the first to identify biopsychosocial correlates of stoic and cautious attitudes toward cancer pain in younger and older patients with advanced cancer. Findings highlight possible age-related motivations for greater pain-related stoicism or cautiousness and can potentially inform interventions addressing challenges in cancer-pain adaptation in advanced cancer.

Objective Age-related patterns in cancer pain remain equivocal. Most studies ignore heterogeneity across multiple domains of well-being, and the potential role of physical (PH) and mental health (MH) quality of life (QOL) in these age-related patterns is unknown. We investigated the relationships between age and cancer pain intensity, qualities, and interference, and physical and psychosocial adaptation and the interaction between age and PH and MH QOL on pain and adaptation to cancer pain. Design In this cross-sectional study, 244 patients with advanced cancer and pain completed measures of pain, QOL, physical function, and psychosocial well-being. Pearson's correlations and ANOVAs assessed relationships between age and demographic and clinical factors, pain, and physical and psychosocial measures. Regression models tested the role of age and its interaction with PH and MH QOL on pain and physical and psychosocial adaptation. Results Older age was associated with a lower likelihood of receiving an opioid prescription, greater likelihood of having comorbidities, and worse functional status. When we did not account for these factors, age was not associated with pain and most adaptation indices. When we did account for these factors and PH QOL, older age was associated with lower non-neuropathic and neuropathic pain and several indices of psychosocial adaptation. Most interestingly, older age was associated with lower non-neuropathic pain among those with high, but not low, MH QOL. Conclusions This study addresses knowledge gaps about factors underlying age-related patterns in cancer pain. Impaired MH QOL may be a proxy for age-related patterns in cancer pain. Summary This study investigated age-related patterns in the experience of cancer pain and the role of quality of life in resilience and vulnerability to pain and adaptation to pain. Older age is associated with lower non-neuropathic pain among those with high, but not low, mental health quality of life, suggesting that impaired mental health quality of life is an important indicator of vulnerability to multidimensional pain outcomes.

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

Objectives: To create a clinical tool to translate between the Clinical Frailty Scale (CFS), which geriatrics teams use, and Palliative Performance Scale (PPS), which palliative care teams use, to create a common language and help improve communication between geriatric and palliative care teams. Design: Cross-sectional. Settings: Two academic health centers: inpatient palliative care and chronic care units, an outpatient geriatric clinic, and inpatient referrals to a palliative care consultation service. Participants: Older adults (≥65) aged 80.9 ± 8.0, with malignant (51%) and nonmalignant (49%) terminal diagnoses (N = 120). Measurements: Each participant was assigned four scores: a CFS score each from a geriatric physician and nurse and a PPS score each from a palliative care physician and nurse. Interrater reliability of each measure was calculated using kappa coefficients. For each measure, the mean of physician and nurse scores was used to calculate every possible combination of CFS and PPS scores to determine the combination with maximum agreement. Results: Interrater reliability of each measure was very high for the CFS (weighted κ = 0.92) and PPS (weighted κ = 0.80). The CFS–PPS score matching that achieved maximum agreement (weighted κ = 0.71) was used to create a conversion chart between the two measures. Conclusion: This conversion chart is a reliable means of translating scores between the CFS and PPS and is useful for geriatric and palliative care teams collaborating in the care of elderly adults.

Summary Background Patients with advanced cancer have reduced quality of life, which tends to worsen towards the end of life. We assessed the effect of early palliative care in patients with advanced cancer on several aspects of quality of life. Methods The study took place at the Princess Margaret Cancer Centre (Toronto, ON, Canada), between Dec 1, 2006, and Feb 28, 2011. 24 medical oncology clinics were cluster randomised (in a 1:1 ratio, using a computer-generated sequence, stratified by clinic size and tumour site [four lung, eight gastrointestinal, four genitourinary, six breast, two gynaecological]), to consultation and follow-up (at least monthly) by a palliative care team or to standard cancer care. Complete masking of interventions was not possible; however, patients provided written informed consent to participate in their own study group, without being informed of the existence of another group. Eligible patients had advanced cancer, European Cooperative Oncology Group performance status of 0–2, and a clinical prognosis of 6–24 months. Quality of life (Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being [FACIT-Sp] scale and Quality of Life at the End of Life [QUAL-E] scale), symptom severity (Edmonton Symptom Assessment System [ESAS]), satisfaction with care (FAMCARE-P16), and problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale [CARES-MIS]) were measured at baseline and monthly for 4 months. The primary outcome was change score for FACIT-Sp at 3 months. Secondary endpoints included change score for FACIT-Sp at 4 months and change scores for other scales at 3 and 4 months. This trial is registered with ClinicalTrials.gov, number NCT01248624. Findings 461 patients completed baseline measures (228 intervention, 233 control); 393 completed at least one follow-up assessment. At 3-months, there was a non-significant difference in change score for FACIT-Sp between intervention and control groups (3·56 points [95% CI −0·27 to 7·40], p=0·07), a significant difference in QUAL-E (2·25 [0·01 to 4·49], p=0·05) and FAMCARE-P16 (3·79 [1·74 to 5·85], p=0·0003), and no difference in ESAS (−1·70 [−5·26 to 1·87], p=0·33) or CARES-MIS (−0·66 [−2·25 to 0·94], p=0·40). At 4 months, there were significant differences in change scores for all outcomes except CARES-MIS. All differences favoured the intervention group. Interpretation Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer. Funding Canadian Cancer Society, Ontario Ministry of Health and Long Term Care.

The aims of this study are to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care (SPC), and to compare them with those of adult oncologists (AOs). Canadian members of the American Society of Pediatric Hematology/Oncology (ASPHO), Canadian Association of Medical Oncologists (CAMO), Canadian Association of Radiation Oncologists (CARO), and the Canadian Society of Surgical Oncology (CSSO) participated in an anonymous survey assessing SPC referral practices. The response rate was 70 % (646/921), 52 % (43/82) for ASPHO members; 5 CARO members self-identified as POs, for a total of 48 POs and 595 AOs. Ninety-six percent of POs had access to inpatient SPC consultation services (vs. 48 % AOs), 31 % to a PCU (vs. 82 % AOs), and 27 % to an outpatient SPC clinic (vs. 73 % AOs). POs more often stated their SPC services accepted patients on chemotherapy than AOs (64 vs. 37 %, p = 0.0004). POs were less likely to refer only after chemotherapy had been stopped (13 vs. 29 % for AOs) and more likely to state that ideally referral should occur at the diagnosis of cancer/incurable cancer (73 vs. 43 %). POs were more likely to agree they would refer earlier if palliative care were renamed “supportive care” (58 vs. 33 %, p

The quality of dying and death refers to the evaluation of the final days of life and the moment of death with respect to how it is prepared for, faced and experienced by those with a terminal illness. It includes experience in multiple domains: physical, psychological, social, spiritual or existential, the nature of health care, life closure and death preparation, and the circumstances of death. To explore the quality of dying and death in cancer patients in Israel and its relationship to place of death and socio-demographic characteristics of the primary caregivers and the deceased. Retrospective assessment of the quality of dying and death, based on caregiver responses to the Quality of Dying and Death (QODD) questionnaire (overall score ranges from 0 to 100; higher scores reflect better dying and death experiences) 8 to 10 months after the death. Ninety-five caregivers of Jewish cancer patients, most of whom were female spouses or children of the deceased. Mean QODD score was 57.2 (standard deviation [SD] = 15), which is in the low-moderate range. Place of death, gender and age of the caregiver, and age of the deceased, were associated with QODD score. This retrospective study in Israel demonstrated that the overall quality of dying and death was regarded as poor by almost half of the caregivers. These findings may reflect the relative lack of specialized palliative care and advance care planning in Israel at the time of this study, which took place between 2006 and 2009. Further research and enhancement of palliative care resources may be needed in Israel and several encouraging recent developments (e.g. staff training and legislation) suggest that such changes are now underway.

Purpose To evaluate the feasibility and response of liver radiotherapy (RT) in improving symptoms and quality of life in patients with hepatocellular carcinoma (HCC) or liver metastases (LM). Patients and Methods Eligible patients had HCC or LM, unsuitable for or refractory to standard therapies, with an index symptom of pain, abdominal discomfort, nausea, or fatigue. The Brief Pain Inventory (BPI), Functional Assessment of Cancer Therapy–Hepatobiliary (FACT-Hep), and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) were completed by patients at baseline and each follow-up. The primary outcome was the percentage of patients with a clinically significant change at 1 month in the BPI subscale of symptom on average in the past 24 hours. Secondary outcomes were improvement in other BPI subscales and at other time points, FACT-Hep and EORTC QLQ-C30 at each follow-up, and toxicity at 1 week. Results Forty-one patients (30 men and 11 women) with HCC (n = 21) or LM (n = 20) were accrued. At 1 month, 48% had an improvement in symptom on average in the past 24 hours. Fifty-two percent of patients had improvement in symptom at its worst, 37% at its least, and 33% now. Improvements in the FACT-G and hepatobiliary subscale were seen in 23% and 29% of patients, respectively, at 1 month. There were also improvements in EORTC QLQ-C30 functional (range, 11% to 21%) and symptom (range, 11% to 50%) domains. One patient developed grade 3 nausea at 1 week. Conclusion Improvements in symptoms were observed at 1 month in a substantial proportion of patients. A phase III study of palliative liver RT is planned.

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

Although an association between depression and physical burden has been demonstrated in advanced cancer, it remains unclear to what extent this is limited to specific physical symptoms, such as pain and fatigue, and is mediated by disease and treatment-related factors. We therefore investigated the relationship between depression and physical burden across a multitude of physical symptoms in this population, while controlling for cancer-related factors including disease severity and proximity to death.A secondary analysis was performed on cross-sectional data in 487 patients with advanced cancer. Measures included the Beck Depression Inventory II and the Memorial Symptom Assessment Scale, which measured physical burden across 24 common cancer symptoms. Disease severity was assessed by survival time and by functional status using the Karnofsky Performance Status scale.Depression severity significantly correlated with number of physical symptoms, symptom distress and symptom severity independent of cancer type, functional status, chemotherapy status and survival time (all p0.001). Depression was associated with increased incidence, severity and distress across multiple physical symptoms and was an independent predictor of physical burden on multiple regression analysis.These findings support the view that a synergistic relationship exists between depression and a broad array of physical symptoms in patients with advanced cancer.

Satisfaction with care is important for quality assurance in oncology, but may differ between patients and caregivers. We aimed to assess satisfaction with cancer care in paired analyses of these groups, examine differences between them, and identify areas for potential intervention.Patients with advanced cancer and their caregivers were recruited from 24 medical oncology outpatient clinics. Satisfaction with care was measured using the FAMCARE (caregivers) and FAMCARE-Patient (patients) scales. Quality of life (QOL) was measured with the Caregiver QOL Index-Cancer (caregivers) and FACIT-Sp (patients). The paired t test assessed differences in overall satisfaction and individual scores. In addition, scores were dichotomized into satisfied versus not satisfied, and McNemar's test was used to assess differences. Multivariable linear regression analyses assessed predictors of patient and caregiver satisfaction, respectively.Satisfaction ratings in the 191 patient-caregiver pairs were high, but patients were more satisfied (p = 0.02). Both groups were least satisfied with information regarding prognosis and pain management. Caregivers were significantly less satisfied than patients regarding coordination of care (p = 0.001) and family inclusion in treatment/care decisions (p 0.0001). In both groups, higher education was associated with lower satisfaction (p ≤ 0.01), while better QOL predicted greater satisfaction (p 0.0001).Communication regarding pain control and prognosis were identified as key areas for improvement. Caregivers seem to desire greater involvement in treatment decisions, though this must be balanced with patient autonomy.

Purpose To describe current referral practices of oncologists to specialized palliative care (SPC) and define demographic characteristics, practice situations, and opinions associated with referral. Methods Physician members of the Canadian Association of Medical Oncologists, Canadian Association of Radiation Oncologists, and Canadian Society of Surgical Oncology were invited to participate in an anonymous survey assessing SPC referral practices. Participants received two e-mailed and two mailed invitations. Results The response rate was 72% (603 of 839 physicians); 37% were medical oncologists/hematologists, 50% were radiation oncologists, and 12% were surgical oncologists. Ninety-four percent reported that SPC was available to them, but only 37% reported that these services accepted patients on chemotherapy. Eighty-four percent referred terminally ill patients usually/always, but generally for uncontrolled symptoms or discharge planning late in the disease course. One third would refer to SPC earlier if it was renamed supportive care. Predictors of higher referral frequency included comprehensiveness of available SPC services (P = .004), satisfaction with SPC availability (P < .001), SPC acceptance of patients receiving chemotherapy (P < .001), and oncologist ease with referring patients to a palliative care service before they were close to death (P < .001). Controlling for specialty, predictors of referral at diagnosis or during chemotherapy, rather than later, included satisfaction with SPC service availability (P < .001) and SPC service acceptance of patients on chemotherapy (P < .001). Conclusion Oncologists referred patients frequently to SPC, but generally late in the disease course for patients with uncontrolled symptoms. Availability of comprehensive SPC, especially for patients receiving chemotherapy, and persisting definitional issues seem to be the main barriers preventing timely referral.

Pain is among the most common symptoms of cancer, with impacts on multiple domains of well-being. Biopsychosocial factors play an important role in adjustment to cancer pain. The Communal Coping Model (CCM), which may elucidate the social context of cancer pain, suggests that people catastrophize to convey distress and elicit support. Attachment style, one's ability to elicit and respond to available support, may be an important factor, but this has not been tested in people with cancer pain. This study examined pain catastrophizing, attachment style and relational context in relation to perceived solicitous, distracting, and punishing responses of significant others to pain in 191 patients with advanced cancer. Consistent with the CCM, higher pain catastrophizing was related to more frequent solicitous and distracting responses. Pain catastrophizing, attachment anxiety, and significant other type interacted in relation to punishing responses. Higher pain catastrophizing was related to less frequent punishing responses only in anxiously attached patients who identified their spouse/partner as their significant other. These results provide support for the CCM of cancer pain, and contribute to refinement of the model. Future research that includes patients and their caregivers is required to further explicate the social context of cancer pain. Perspective This article investigates the Communal Coping Model in people with cancer pain. In partial support of the model, we found that pain catastrophizing was related to more frequent solicitous and distracting responses but less frequent punishing responses only in anxiously attached patients who identified their spouse/partner as their significant other.