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Importance: Artificial intelligence (AI) chatbots pose the opportunity to draft template responses to patient questions. However, the ability of chatbots to generate responses based on domain-specific knowledge of cancer remains to be tested., Objective: To evaluate the competency of AI chatbots (GPT-3.5 [chatbot 1], GPT-4 [chatbot 2], and Claude AI [chatbot 3]) to generate high-quality, empathetic, and readable responses to patient questions about cancer., Design, Setting, and Participants: This equivalence study compared the AI chatbot responses and responses by 6 verified oncologists to 200 patient questions about cancer from a public online forum. Data were collected on May 31, 2023., Exposures: Random sample of 200 patient questions related to cancer from a public online forum (Reddit r/AskDocs) spanning from January 1, 2018, to May 31, 2023, was posed to 3 AI chatbots., Main Outcomes and Measures: The primary outcomes were pilot ratings of the quality, empathy, and readability on a Likert scale from 1 (very poor) to 5 (very good). Two teams of attending oncology specialists evaluated each response based on pilot measures of quality, empathy, and readability in triplicate. The secondary outcome was readability assessed using Flesch-Kincaid Grade Level., Results: Responses to 200 questions generated by chatbot 3, the best-performing AI chatbot, were rated consistently higher in overall measures of quality (mean, 3.56 [95% CI, 3.48-3.63] vs 3.00 [95% CI, 2.91-3.09]; P < .001), empathy (mean, 3.62 [95% CI, 3.53-3.70] vs 2.43 [95% CI, 2.32-2.53]; P < .001), and readability (mean, 3.79 [95% CI, 3.72-3.87] vs 3.07 [95% CI, 3.00-3.15]; P < .001) compared with physician responses. The mean Flesch-Kincaid Grade Level of physician responses (mean, 10.11 [95% CI, 9.21-11.03]) was not significantly different from chatbot 3 responses (mean, 10.31 [95% CI, 9.89-10.72]; P > .99) but was lower than those from chatbot 1 (mean, 12.33 [95% CI, 11.84-12.83]; P < .001) and chatbot 2 (mean, 11.32 [95% CI, 11.05-11.79]; P = .01)., Conclusions and Relevance: The findings of this study suggest that chatbots can generate quality, empathetic, and readable responses to patient questions comparable to physician responses sourced from an online forum. Further research is required to assess the scope, process integration, and patient and physician outcomes of chatbot-facilitated interactions.

Purpose: For patients with advanced cancer, early consultations with palliative care (PC) specialists reduce costs, improve quality of life, and prolong survival. However, capacity limitations prevent all patients from receiving PC shortly after diagnosis. We evaluated whether a prognostic machine learning system could promote early PC, given existing capacity., Methods: Using population-level administrative data in Ontario, Canada, we assembled a cohort of patients with incurable cancer who received palliative-intent systemic therapy between July 1, 2014, and December 30, 2019. We developed a machine learning system that predicted death within 1 year of each treatment using demographics, cancer characteristics, treatments, symptoms, laboratory values, and history of acute care admissions. We trained the system in patients who started treatment before July 1, 2017, and evaluated the potential impact of the system on PC in subsequent patients., Results: Among 560,210 treatments received by 54,628 patients, death occurred within 1 year of 45.2% of treatments. The machine learning system recommended the same number of PC consultations observed with usual care at the 60.0% 1-year risk of death, with a first-alarm positive predictive value of 69.7% and an outcome-level sensitivity of 74.9%. Compared with usual care, system-guided care could increase early PC by 8.5% overall (95% CI, 7.5 to 9.5; P < .001) and by 15.3% (95% CI, 13.9 to 16.6; P < .001) among patients who live 6 months beyond their first treatment, without requiring more PC consultations in total or substantially increasing PC among patients with a prognosis exceeding 2 years., Conclusion: Prognostic machine learning systems could increase early PC despite existing resource constraints. These results demonstrate an urgent need to deploy and evaluate prognostic systems in real-time clinical practice to increase access to early PC.

Importance: The COVID-19 pandemic had a profound impact on the delivery of cancer care, but less is known about its association with place of death and delivery of specialized palliative care (SPC) and potential disparities in these outcomes., Objective: To evaluate the association of the COVID-19 pandemic with death at home and SPC delivery at the end of life and to examine whether disparities in socioeconomic status exist for these outcomes., Design, Setting, and Participants: In this cohort study, an interrupted time series analysis was conducted using Ontario Cancer Registry data comprising adult patients aged 18 years or older who died with cancer between the pre-COVID-19 (March 16, 2015, to March 15, 2020) and COVID-19 (March 16, 2020, to March 15, 2021) periods. The data analysis was performed between March and November 2023., Exposure: COVID-19-related hospital restrictions starting March 16, 2020., Main Outcomes and Measures: Outcomes were death at home and SPC delivery at the end of life (last 30 days before death). Socioeconomic status was measured using Ontario Marginalization Index area-based material deprivation quintiles, with quintile 1 (Q1) indicating the least deprivation; Q3, intermediate deprivation; and Q5, the most deprivation. Segmented linear regression was used to estimate monthly trends in outcomes before, at the start of, and in the first year of the COVID-19 pandemic., Results: Of 173 915 patients in the study cohort (mean [SD] age, 72.1 [12.5] years; males, 54.1% [95% CI, 53.8%-54.3%]), 83.7% (95% CI, 83.6%-83.9%) died in the pre-COVID-19 period and 16.3% (95% CI, 16.1%-16.4%) died in the COVID-19 period, 54.5% (95% CI, 54.2%-54.7%) died at home during the entire study period, and 57.8% (95% CI, 57.5%-58.0%) received SPC at the end of life. In March 2020, home deaths increased by 8.3% (95% CI, 7.4%-9.1%); however, this increase was less marked in Q5 (6.1%; 95% CI, 4.4%-7.8%) than in Q1 (11.4%; 95% CI, 9.6%-13.2%) and Q3 (10.0%; 95% CI, 9.0%-11.1%). There was a simultaneous decrease of 5.3% (95% CI, -6.3% to -4.4%) in the rate of SPC at the end of life, with no significant difference among quintiles. Patients who received SPC at the end of life (vs no SPC) were more likely to die at home before and during the pandemic. However, there was a larger immediate increase in home deaths among those who received no SPC at the end of life vs those who received SPC (Q1, 17.5% [95% CI, 15.2%-19.8%] vs 7.6% [95% CI, 5.4%-9.7%]; Q3, 12.7% [95% CI, 10.8%-14.5%] vs 9.0% [95% CI, 7.2%-10.7%]). For Q5, the increase in home deaths was significant only for patients who did not receive SPC (13.9% [95% CI, 11.9%-15.8%] vs 1.2% [95% CI, -1.0% to 3.5%])., Conclusions and Relevance: These findings suggest that the COVID-19 pandemic was associated with amplified socioeconomic disparities in death at home and SPC delivery at the end of life. Future research should focus on the mechanisms of these disparities and on developing interventions to ensure equitable and consistent SPC access.

Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22-39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Family caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes., Methods: We searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and Cumulative Index to Nursing and Allied Health Literature databases from inception through June 2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning, and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD)., Results: Of 12 193 references identified, 56 articles reporting on 49 trials involving 8554 caregivers were eligible for analysis; 16 (33%) targeted caregivers, 19 (39%) patient-caregiver dyads, and 14 (29%) patients and their families. At 1- to 3-month follow-up, interventions had a statistically significant effect on overall QOL (SMD = 0.24, 95% confidence interval [CI] = 0.10 to 0.39); I2 = 52.0%), mental well-being (SMD = 0.14, 95% CI = 0.02 to 0.25; I2 = 0.0%), anxiety (SMD = 0.27, 95% CI = 0.06 to 0.49; I2 = 74.0%), and depression (SMD = 0.34, 95% CI = 0.16 to 0.52; I2 = 64.4) compared with standard care. In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief., Conclusions: Interventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health. These data support the routine provision of interventions to improve well-being in caregivers of patients with advanced cancer., (© The Author(s) 2023. Published by Oxford University Press.)

Purpose: Telehealth allows patients to maintain contact with healthcare providers without necessitating travel, and is becoming increasingly utilized. The purpose of this study is to describe the components of telehealth palliative care interventions for patients with advanced cancer before the COVID-19 pandemic; identify any intervention components associated with improvements in outcomes; and evaluate reporting of interventions., Methods: This scoping review was registered on the Open Science Framework. We searched 5 medical databases from inception to June 19, 2020. Inclusion criteria were: age ≥ 18, advanced cancer, asynchronous or synchronous telehealth intervention, and specialized palliative care interventions in any setting. We assessed the quality of intervention reporting using the Template for Intervention Description and Replication (TIDieR) checklist., Results: Twenty-three studies met the inclusion criteria: 15 (65%) quantitative (7 randomized controlled trials, 5 feasibility trials, 3 retrospective chart reviews); 4 (17%) mixed methods, and 4 (17%) qualitative. Most quantitative and mixed methods studies were conducted in North America (12/19, 63%), reported on hybrid (in-person and telehealth) interventions (9/19, 47%), and were delivered by nurses (12/19, 63%) in the home setting (14/19, 74%). In most studies that reported improvements in patient- or caregiver-reported outcomes, the content was psychoeducational and resulted in improvements for psychological symptoms. No study provided complete reporting on all 12 TIDieR checklist items., Conclusion: Telehealth studies are needed that reflect palliative care's mission to provide multidisciplinary team-based care that improves quality of life in diverse settings, and that provide detailed reporting of interventions., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Purpose: Although early palliative care is recommended, resource limitations prevent its routine implementation. We report on the preliminary findings of a mixed methods study involving a randomized controlled trial (RCT) of Symptom screening with Targeted Early Palliative care (STEP) and qualitative interviews., Methods: Adults with advanced solid tumors and an oncologist-estimated prognosis of 6-36 months were randomized to STEP or symptom screening alone. STEP involved symptom screening at each outpatient oncology visit; moderate to severe scores triggered an email to a palliative care nurse, who offered referral to in-person outpatient palliative care. Patient-reported outcomes of quality of life (FACT-G7; primary outcome), depression (PHQ-9), symptom control (ESAS-r-CS), and satisfaction with care (FAMCARE P-16) were measured at baseline and 2, 4, and 6 months. Semi-structured interviews were conducted with a subset of participants., Results: From Aug/2019 to Mar/2020 (trial halted due to COVID-19 pandemic), 69 participants were randomized to STEP (n = 33) or usual care (n = 36). At 6 months, 45% of STEP arm patients and 17% of screening alone participants had received palliative care (p = 0.009). Nonsignificant differences for all outcomes favored STEP: difference in change scores for FACT-G7 = 1.67 (95% CI: -1.43, 4.77); ESAS-r-CS = -5.51 (-14.29, 3.27); FAMCARE P-16 = 4.10 (-0.31, 8.51); PHQ-9 = -2.41 (-5.02, 0.20). Sixteen patients completed qualitative interviews, describing symptom screening as helpful to initiate communication; triggered referral as initially jarring but ultimately beneficial; and referral to palliative care as timely., Conclusion: Despite lack of power for this halted trial, preliminary results favored STEP and qualitative results demonstrated acceptability. Findings will inform an RCT of combined in-person and virtual STEP., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Opinion Statement: While the benefits of early palliative care are indisputable, most of the current evidence has emerged from resource-rich settings in urban areas of high-income countries, with an emphasis on solid tumors in outpatient settings; this model of palliative care integration is not currently scalable internationally. A shortage of specialist palliative care clinicians means that in order to meet the needs of all patients who require support at any point along their advanced cancer trajectory, palliative care must also be provided by family physicians and oncology clinicians who require training and mentorship. Models of care that facilitate the timely provision of seamless palliative care across all settings (inpatient, outpatient, and home-based care), with clear communication between clinicians, are crucial to the provision of patient-centred palliative care. The unique needs of patients with hematological malignancies must be further explored and existing models of palliative care provision modified to meet these needs. Finally, care must be provided in an equitable and culturally sensitive manner, recognizing the challenges associated with the delivery of high-quality palliative care to both patients in high-income countries who live in rural areas, as well as to those in low- and middle-income countries. A one-size-fits-all model will not suffice, and there is an urgent need to develop innovative context-specific models of palliative care integration worldwide, in order to provide the right care, in the right place, and at the right time., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Family physicians' (FPs) long-term relationships with their oncology patients position them ideally to provide primary palliative care, yet their involvement is variable. We examined perceptions of FP involvement among outpatients receiving palliative care at a cancer center and identified factors associated with this involvement., Methods: Patients with advanced cancer attending an oncology palliative care clinic (OPCC) completed a 25-item survey. Eligible patients had seen an FP within 5 years. Binary multivariable logistic regression analyses were conducted to identify factors associated with (1) having seen an FP for palliative care within 6 months, and (2) having a scheduled/planned FP appointment., Results: Of 258 patients, 35.2% (89/253) had seen an FP for palliative care within the preceding 6 months, and 51.2% (130/254) had a scheduled/planned FP appointment. Shorter travel time to FP (odds ratio [OR] = 0.67, 95% confidence interval [CI] = 0.48-0.93, p = 0.02), the FP having a 24-h support service (OR = 1.96, 95% CI = 1.02-3.76, p = 0.04), and a positive perception of FP's care (OR = 1.05, 95% CI = 1.01-1.09, p = 0.01) were associated with having seen the FP for palliative care. English as a first language (OR = 2.90, 95% CI = 1.04-8.11, p = 0.04) and greater ease contacting FP after hours (OR = 1.33, 95% CI = 1.08-1.64, p = 0.008) were positively associated, and female sex of patient (OR = 0.51, 95% CI = 0.30-0.87, p = 0.01) and travel time to FP (OR = 0.66, 95% CI = 0.47-0.93, p = 0.02) negatively associated with having a scheduled/planned FP appointment. Number of OPCC visits was not associated with either outcome., Conclusion: Most patients had not seen an FP for palliative care. Accessibility, availability, and equity are important factors to consider when planning interventions to encourage and facilitate access to FPs for palliative care., (© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Outpatient palliative care facilitates timely symptom management, psychosocial care and care planning. A growing number of cancer centers have either stand-alone or embedded outpatient palliative care clinics. In this "Controversies in Palliative Care" article, three groups of thought leaders independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. One group advocates for stand-alone clinics, another for embedded, and the third group tries to find a balance. In the absence of evidence that directly compares the two models, factors such as cancer center size, palliative care team composition, clinic space availability, and financial considerations may drive the decision-making process at each institution. Stand-alone clinics may be more appropriate for larger academic cancer centers or palliative care programs with a more comprehensive interdisciplinary team, while embedded clinics may be more suited for smaller palliative care programs or community oncology programs to stimulate referrals. As outpatient clinic models continue to evolve, investigators need to document the referral and patient outcomes to inform practice., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Patients 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., Methods: A 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., Results: 606 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))., Conclusions: MO 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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

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 indirect effect =0.05) or through greater quality of life (β indirect effect =0.02). At 4 months, EPC increased satisfaction through improved quality of life (β indirect effect =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 indirect effect =0.13-0.16) and through reduced psychological symptoms and/or improved quality of life (β indirect effect =0.00-0.02). At 4 months, improved preparation for end-of-life mediated EPC effects on satisfaction by enhancing quality of life (β indirect effect =0.01) or by reducing psychological symptoms and thereby increasing quality of life (β indirect effect =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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Early palliative care (EPC) improves the quality of life but may not be feasible for all patients with advanced cancer. Symptom screening has been suggested to triage patients for EPC, but scant evidence exists for this practice., Methods: We conducted a subgroup analysis of a cluster-randomized controlled trial of EPC vs. standard oncology care according to patients' baseline symptom scores (high [>23] vs. low [≤23] Edmonton Symptom Assessment System Distress Score [ESAS SDS]). A linear mixed-effects model was used to account for correlation within clusters, adjusting for the baseline outcome score and all covariates in the original trial., Results: Among the 461 participants, baseline symptom scores were high in 229 patients (127 intervention, 102 control) and low in 232 (101 intervention and 131 control). Among those with high baseline symptoms, there was improved quality of life in the EPC arm compared to controls at 4 months (adjusted difference in primary outcome of FACIT-Sp change score [95% CI], 8.7 [2.8 to 14.5], p = 0.01; adjusted difference in QUAL-E, 4.2 [0.9-7.5], p = 0.02); there was also improved satisfaction with care (6.9 [3.8-9.9], p = 0.001) and clinician-patient interactions (-1.7 [-3.4 to -0.1], p = 0.04), but no significant difference in ESAS SDS (-5.6 [-12.7 to 1.4], p = 0.11). In the low baseline symptom group, there were no significant differences between arms for any outcomes., Conclusion: EPC improved quality of life, satisfaction with care, and clinician-patient interactions only in those with high baseline symptoms. Symptom severity may be an appropriate criterion to trigger early referrals to palliative care., (© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

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., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

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.

Background: Although 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., Methods: We 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., Results: Between 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%, p<0.001). Median survival was shorter for patients seen urgently (4.3 months, 95% CI 3.4 to 7.8) versus routinely (8.1 months, 95% CI 7.2 to 9.5)., Conclusions: Compared 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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

COVID-19 was first reported in Wuhan, China, in December 2019; it rapidly spread around the world and was declared a global pandemic by the World Health Organization in March 2020. The palliative care program at the Princess Margaret Cancer Centre, Toronto, Canada, provides comprehensive care to patients with advanced cancer and their families, through services including an acute palliative care unit, an inpatient consultation service, and an ambulatory palliative care clinic. In the face of a global pandemic, palliative care teams are uniquely placed to support patients with cancer who also have COVID-19. This may include managing severe symptoms such as dyspnea and agitation, as well as guiding advance care planning and goals of care conversations. In tandem, there is a need for palliative care teams to continue to provide care to patients with advanced cancer who are COVID-negative but who are at higher risk of infection and adverse outcomes related to COVID-19. This paper highlights the unique challenges faced by a palliative care team in terms of scaling up services in response to a global pandemic while simultaneously providing ongoing support to their patients with advanced cancer at a tertiary cancer center.

Opinion Statement: Evidence from randomized controlled trials and meta-analyses has shown that early integration of specialized palliative care improves symptoms and quality of life for patients with advanced cancer. There are various models of early integration, which may be classified based on setting of care and method of palliative care referral. Most successful randomized controlled trials of early palliative care have used a model of specialized teams providing in-person palliative care in free-standing or embedded outpatient clinics. During the COVID-19 pandemic, telehealth has become a prominent model for palliative care delivery. This model of care has been well received by patients and palliative care providers, although evidence to date is limited. Despite evidence from trials that routine early integration of palliative care into oncology care improves patient outcomes, referral to palliative care still occurs mostly according to the judgment of individual oncologists. This hinders equitable access to palliative care and to its known benefits for patients and their caregivers. Automated referral based on triggering criteria is being actively explored as an alternative. In particular, routine technology-assisted symptom screening, combined with targeted needs-based automatic referral to outpatient palliative care, may improve integration and ultimately increase quality of life.

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., (© 2020 AlphaMed Press.)

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., (© 2020 American Cancer Society.)

Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient's declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient's death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver's situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.

Purpose: To describe the practices and opinions of specialized palliative care (SPC) physicians regarding early palliative care for patients with cancer, determine characteristics associated with receiving early referrals; and solicit opinions regarding renaming the specialty "supportive care.", Methods: The survey was distributed by mail and e-mail to physicians who had previously self-identified as providing palliative care. SPC physicians were defined as receiving palliative care referrals from other physicians and not providing palliative care only for their own patients., Results: The response rate was 71% (531/746), of whom 257 (48.4%) practiced SPC. Of these SPC physicians, 84% provided mainly cancer care; > 90% supported early palliative care referral in oncology and had referral criteria facilitating this, but only 20% received early referrals (> 6-month prognosis). There was ambivalence regarding caring for patients with full resuscitation status and responsibility for managing cancer treatment-related complications. SPC physicians receiving early referrals were more likely to be female (p = 0.02) and have a postgraduate degree (p = 0.02), and less likely to provide mainly cancer care (p = 0.03) and to agree that patients should stop chemotherapy before referral (p = 0.009). Although 60% agreed that patients perceive the term "palliative care" negatively and 39% believed a name change to supportive care would encourage early referral, only 21% supported renaming the specialty., Conclusions: Although most SPC physicians supported early palliative care in oncology, the timing of referrals was often late, and was associated with characteristics of SPC physicians. Few SPC physicians supported renaming palliative care.

Objective: We investigated correspondence between symptom severity and symptom bothersomeness in patients with advanced cancer. Background: Symptom severity is commonly assessed in clinical cancer settings, but bothersomeness of these symptoms is less often measured. Methods: Participants with advanced cancer enrolled in a cluster-randomized trial of early palliative care completed the Edmonton Symptom Assessment System (ESAS) and the quality of life at the end of life (QUAL-E) measure as part of their baseline assessment. For each symptom, we examined the correspondence between the symptom being indicated as most severe on the ESAS and rated as most bothersome on the QUAL-E. Results: For the 386 patients who completed relevant sections of the ESAS and QUAL-E, tiredness (32.8%), sleep (23.8%), and appetite (20.2%) were most frequently rated as most severe, whereas pain (28.9%) and tiredness (24.3%) were most frequently indicated as most bothersome. The most bothersome and most severe symptom corresponded in 42%. Pain and/or tiredness were consistently among the top three most bothersome symptoms, whereas appetite was frequently rated the most severe symptom but was rarely perceived as the most bothersome. The probability that patients rating a symptom as most severe would also rate it as most bothersome was highest for pain (66%), nausea (58%), and tiredness (40%). Discussion: ESAS symptom severity does not necessarily indicate patients' most bothersome symptom; regardless of severity, pain and tiredness are most frequently perceived as most bothersome. Further research should investigate the clinical benefits of patients also indicating their three most bothersome ESAS symptoms.

Background: Patients with advanced cancer have an elevated risk of venous thromboembolism. Increasingly, patients are admitted to palliative care settings for brief admissions, with greater numbers of discharges (vs deaths) reported internationally. There is limited guidance around the use of thromboprophylaxis or incidence of venous thromboembolism for these patients., Aim: The aim of this study was to review the use of thromboprophylaxis as well as incidence of venous thromboembolism and bleeding in palliative care units or residential hospices for patients with advanced cancer., Design: A systematic review using Cochrane methods., Data Sources: Medline, Embase and the Cochrane Library were searched up to 28 September 2018 along with a grey literature search; the reference lists of selected papers were hand-searched. Inclusion criteria were original papers assessing thromboprophylaxis use in palliative care units or residential hospices for adult inpatients with cancer. Two reviewers independently selected and appraised papers using a tool designed for disparate data. Heterogeneity in study design made a meta-analysis not possible., Results: A total of 11 full-text papers (9 quantitative and 2 qualitative) and 11 abstracts were included. Thromboprophylaxis use ranged between 4% and 53%; venous thromboembolism rates between 0.5% and 20%; and bleeding incidence was between 0.01% and 9.8%. Risk assessment tools were used infrequently and adherence to international thromboprophylaxis guidelines ranged between 5% and 71%. Physician opinions differed around the use of thromboprophylaxis; patients were largely accepting of thromboprophylaxis if it was offered., Conclusion: There is limited evidence around the optimal use of thromboprophylaxis for patients with advanced cancer admitted to palliative care settings. Although some patients may derive benefit, further research in this area is warranted.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Purpose: 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., Methods: 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., Results: 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 < 0.0001), and more likely to have a higher FDSA score 21-40 (OR 3.02, p = 0.004). Patients discharged to CPCU/H were less likely to have been admitted for symptom control (OR 0.06, p < 0.0001)., Conclusion: Age, reason for admission, and the FDSA symptom cluster on admission are variables that can inform clinicians about probable discharge disposition on an APCU.

Purpose: Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly., Methods: This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used., Results: Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries., Conclusion: A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries.

Over the past decade, a large body of evidence has accumulated supporting the integration of palliative care into oncology practice for patients with advanced cancer. The question is no longer whether palliative care should be offered, but what is the optimal model of delivery, when is the ideal time to refer, who is in greatest need of a referral, and how much palliative care should oncologists themselves be providing. These questions are particularly relevant given the scarcity of palliative care resources internationally. In this state-of-the-science review directed at the practicing cancer clinician, the authors first discuss the contemporary literature examining the impact of specialist palliative care on various health outcomes. Then, conceptual models are provided to support team-based, timely, and targeted palliative care. Team-based palliative care allows the interdisciplinary members to address comprehensively the multidimensional care needs of patients and their caregivers. Timely palliative care, at its best, is preventive care to minimize crises at the end of life. Targeted palliative care involves identifying the patients most likely to benefit from specialist palliative care interventions, akin to the concept of targeted cancer therapies. Finally, the strengths and weaknesses of innovative care models, such as outpatient clinics, embedded clinics, nurse-led palliative care, primary palliative care provided by oncology teams, and automatic referral, are summarized. Moving forward, more research is needed to determine how different health systems can best personalize palliative care to provide the right level of intervention, for the right patient, in the right setting, at the right time. CA Cancer J Clin. 2018;680:00-00. 2018 American Cancer Society, Inc., (© 2018 American Cancer Society.)

Background: Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers., Objective: Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP)., Design: Semistructured qualitative interviews were conducted with 61 bereaved caregivers., Subjects: 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., Approach: 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., Results: 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., Conclusions: 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.

Context: Performance status measures are increasingly completed by patients in outpatient cancer settings, but are not well validated for this use., Objectives: 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., Methods: 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., Results: 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)., Conclusion: 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., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services., Methods: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving. Grounded theory guided all aspects of the study., Results: Sixty-one bereaved caregivers (30 intervention, 31 control) were interviewed, including spouses (33), adult children (19), and other family (9). There were no differences in themes between control and intervention groups. The core category of Taking charge encompassed caregivers' assumption of active roles in care, often in the face of inadequate formal support. There were 4 interrelated subcategories: (1) Navigating the system-navigating the complexities of the home care system to access resources and supports; (2) Engaging with professional caregivers-interacting with visiting personnel to advocate for consistency and quality of care; (3) Preparing for death-seeking out information about what to expect at the end of life; and (4) Managing after death-managing multiple administrative responsibilities in the emotionally charged period following death., Conclusions: Caregivers were often thrust into assuming control in order to compensate for deficiencies in formal palliative home care services. Policies, quality indicators, and guidelines are needed to ensure the provision of comprehensive, interdisciplinary home palliative care., (Copyright © 2018 John Wiley & Sons, Ltd.)

Background: Early involvement of palliative care improves patient quality of life; however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed., Aim: To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention., Design: Qualitative grounded theory study., Setting: Tertiary comprehensive cancer centre., Participants: Following participation in a cluster-randomised trial of early palliative care, 23 caregivers (14 intervention and 9 control) of patients with advanced cancer participated in semi-structured interviews to discuss their quality of life., Results: The core category was 'living in the patient's world'. Five related themes were 'burden of illness and caregiving', 'assuming the caregiver role', 'renegotiating relationships', 'confronting mortality' and 'maintaining resilience'. There was thematic consistency between trial arms, except for the last two themes, which had distinct differences. Participants in the intervention group engaged in open discussion about the end of life, balanced hope with realism and had increased confidence from a range of professional supports. Controls tended to engage in 'deliberate ignorance' about the future, felt uncertain about how they would cope and lacked knowledge of available supports., Conclusions: Caregiver quality of life is influenced profoundly by the interaction with the patient and should be measured with specific questionnaires that include content related to confronting mortality and professional supports. This would improve delineation of quality of life for caregivers and allow greater sensitivity to change. Registration: clinicaltrials.gov NCT01248624.

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.

Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers., Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis., Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants' initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as "ongoing care" that improved their "quality of living" but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting., Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful., (© 2016 Canadian Medical Association or its licensors.)

Context: 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., Objectives: 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., Methods: 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., Results: 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)., Conclusion: 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., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Several recently published randomized controlled trials have demonstrated the benefits of early palliative care involvement for patients with advanced cancer. In the oncology outpatient setting, palliative care clinics are an ideal site for the provision of early, collaborative support, which can be maintained throughout the cancer trajectory. Despite this, access to ambulatory palliative care clinics is limited, even at tertiary cancer centres. Existing programs for outpatient palliative care are variable in scope and are not well described in the literature. We describe the development and expansion of an outpatient palliative care clinic at the Princess Margaret Cancer Centre, Toronto, Canada, demonstrating how the clinic functions at a local and regional level. This clinic served as the intervention for a recent large cluster-randomized trial of early palliative care. The model for this service can be adapted by other palliative care programs that aim to provide early, integrated oncology care.

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., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Purpose: Guidelines recommend documentation of care preferences for patients with advanced cancer upon hospital admission.We assessed end-of-life outcomes for patients who did or did not have code status (CS) documented within 48 h of admission., Methods: This was a retrospective cohort study of patients who died on an inpatient oncology ward between January 2004 and February 2009. Primary end-of-life outcomes were "code blues" and cardiopulmonary resuscitation (CPR) attempts; secondary outcomes included unsuccessful CPR attempts, intensive care unit (ICU), consultations, and ICU admissions. Using logistic regression, outcomes were compared between those with and without CS documentation ≤ 48 h from admission (full code or do-not-resuscitate), controlling for significant confounders., Results: The 336 patients had a median age of 61 years; 97 % had advanced cancer. The median time from admission to death was 12 days (range <1-197 days); 151 patients (45 %) had CS documentation ≤ 48 h from admission. Controlling for confounders of reason for admission and marital status, patients with CS documentation ≤ 48 h from admission had fewer "code blues" (2 vs. 15 %; adjusted odds ratio(AOR) 0.12, 95% confidence interval (CI) 0.02-0.43), CPR attempts (1 vs. 11 %; AOR 0.12, 95 % CI 0.01-0.51), unsuccessful CPR attempts (0 vs. 11 %), ICU consultations (9 vs. 30 %; AOR 0.19, 95 % CI 0.08-0.40) and ICU admissions (2 vs. 5 %; AOR 0.18, 95 %CI 0.02-0.85)., Conclusions: In patients who died on an oncology ward, CS documentation within 48 h of admission was associated with less aggressive end-of-life care, regardless of the reason for admission.

Purpose: 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., Methods: 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., Results: 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)., Conclusions: 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.