Improving patient and caregiver outcomes in oncology: Team-based, timely, and targeted palliative care.

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.

Advanced Cancer in Young Adults (YAs): Living in a Liminal Space.

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.

Integrating Palliative Care into Oncology Care Worldwide: The Right Care in the Right Place at the Right Time.

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.

Telehealth palliative care interventions for patients with advanced cancer: a scoping review.

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.

Symptom screening with Targeted Early Palliative care (STEP) versus usual care for patients with advanced cancer: a mixed methods study.

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.

Palliative care for adolescents and young adults with advanced illness: A scoping review.

BACKGROUND: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences. AIM: This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses. DESIGN: Scoping review. This review was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/SPTD7). DATA SOURCES: Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design. RESULTS: We identified 51 studies published between 2002 and 2021. Most studies were published in the United States (n = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews (n = 33). Three main topics were identified: Physical symptom burden (n = 26, 51%), Psychological and social needs (n = 33, 65%), and end-of-life care (n = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location. CONCLUSION: The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.

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

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: ß = - .25, p = .04), less current grief (present TRIG: ß = - .26, p = .03), less complicated grief (PG-13: ß = - .37, p = .001), and less depression (CESD-10: ß = - .35, p = .005). Greater symptom control was related to less current grief (present TRIG: ß = - .27, p = .02), less complicated grief (PG-13: ß = - .24, p = .03), and less depression (CESD-10: ß = - .29, p = .01). Significant patient age × connectedness interaction effects for current grief (present TRIG: ß = .30, p = .02) and complicated grief (PG-13: ß = .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.

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

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.

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

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.

Models of Integration of Specialized Palliative Care with Oncology.

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.

Palliative care provision at a tertiary cancer center during a global pandemic.

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.

Impact of Medical Assistance in Dying on palliative care: A qualitative study.

BACKGROUND: Medical Assistance in Dying comprises interventions that can be provided by medical practitioners to cause death of a person at their request if they meet predefined criteria. In June 2016, Medical Assistance in Dying became legal in Canada, sparking intense debate in the palliative care community. AIM: This study aims to explore the experience of frontline palliative care providers about the impact of Medical Assistance in Dying on palliative care practice. DESIGN: Qualitative descriptive design using semi-structured interviews and thematic analysis. SETTINGS/PARTICIPANTS: We interviewed palliative care physicians and nurses who practiced in settings where patients could access Medical Assistance in Dying for at least 6 months before and after its legalization. Purposeful sampling was used to recruit participants with diverse personal views and experiences with assisted death. Conceptual saturation was achieved after interviewing 23 palliative care providers (13 physicians and 10 nurses) in Southern Ontario. RESULTS: Themes identified included a new dying experience with assisted death; challenges with symptom control; challenges with communication; impact on palliative care providers personally and on their relationships with patients; and consumption of palliative care resources to support assisted death. CONCLUSION: Medical Assistance in Dying has had a profound impact on palliative care providers and their practice. Communication training with access to resources for ethical decision-making and a review of legislation may help address new challenges. Further research is needed to understand palliative care provider distress around Medical Assistance in Dying, and additional resources are necessary to support palliative care delivery.

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

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.

Practices and opinions of specialized palliative care physicians regarding early palliative care in oncology.

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.

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

BACKGROUND: Evidence supporting early palliative care is based on trials of specialised palliative care, but a more sustainable model might involve mainly primary providers. AIM: The aim of this study was to compare the characteristics of physicians providing primary and specialised palliative care, their attitudes towards early palliative care and their perception of having sufficient resources for its provision. DESIGN: Survey distributed by mail and e-mail. Specialised providers were defined as both receiving palliative care referrals from other physicians and not providing palliative care only for their own patients. SETTING/PARTICIPANTS: A total of 531 physicians providing palliative care in Canada (71% participation) participated in the study. RESULTS: Of the participants, 257 (48.4%) provided specialised and 274 (51.6%) primary care. Specialists were more likely to have palliative care training (71.8% vs 35.2%), work in urban areas (94.1% vs 75.6%), academic centres (47.8% vs 26.0%) and on teams (82.4% vs 16.8%), and to provide mainly cancer care (84.4% vs 65.1%) (all p < 0.001). Despite strongly favouring early palliative care, only half in each group agreed they had resources to deliver it; agreement was stronger among family physicians, those working on teams and those with greater availability of community and psychosocial support. Primary providers were more likely to agree that renaming the specialty 'supportive care' would increase patient comfort with early palliative care referral (47.4% vs 35.5%, p < 0.001). CONCLUSION: Despite strongly favouring the concept, both specialists and primary providers lack resources to deliver early palliative care; its provision may be facilitated by team-based care with appropriate support. Opinions differ regarding the value of renaming palliative care.

Thromboprophylaxis for inpatients with advanced cancer in palliative care settings: A systematic review and narrative synthesis.

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.

Integration of oncology and palliative care: a Lancet Oncology Commission.

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.

"I didn't want to be in charge and yet I was": Bereaved caregivers' accounts of providing home care for family members with advanced cancer.

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.

Factors associated with discharge disposition on an acute palliative care unit.

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.

Caregiver quality of life in advanced cancer: Qualitative results from a trial of early palliative care.

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.