Strategies Used by Outpatient Oncology Nurses to Introduce Early Palliative Care: A Qualitative Study.

BACKGROUND: Although early palliative care is linked to improved health-related quality of life, satisfaction with care, and symptom management, the clinical strategies that nurses use to actively initiate this care are unknown. OBJECTIVES: The aims of this study were to conceptualize the clinical strategies that outpatient oncology nurses use to introduce early palliative care and to determine how these strategies align with the framework of practice. METHODS: A constructivist-informed grounded theory study was conducted in a tertiary cancer care center in Toronto, Canada. Twenty nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) from multiple outpatient oncology clinics (ie, breast, pancreatic, hematology) completed semistructured interviews. Analysis occurred concurrently with data collection and used constant comparison until theoretical saturation was reached. RESULTS: The overarching core category, pulling it all together, outlines the strategies used by oncology nurses to support timely palliative care referral, drawing on the coordinating, collaborating, relational, and advocacy dimensions of practice. The core category incorporated 3 subcategories: (1) catalyzing and facilitating synergy among disciplines and settings, (2) promoting and considering palliative care within patients' personal narratives, and (3) widening the focus from disease-focused treatment to living well with cancer. CONCLUSION: Outpatient oncology nurses enact unique clinical strategies, which are aligned with the nursing framework and reflected multiple dimensions of practice, to introduce early palliative care. IMPLICATIONS FOR PRACTICE: Our findings have clinical, educational, and policy implications for fostering the conditions in which nurses are supported to maximize their full potential in the introduction of early palliative care.

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 Physicians' Perceptions of Conditions Required to Provide Early Palliative Care.

CONTEXT: Early palliative care (EPC) is widely recommended but its implementation may be challenging. OBJECTIVES: We conducted a qualitative analysis of Canadian palliative care physicians' opinions about conditions necessary to provide EPC. METHODS: A survey assessing attitudes and opinions regarding EPC was distributed to physicians providing primary or specialized palliative care, as identified by the Canadian Society of Palliative Care Physicians. The survey included an optional final section for respondents' general comments; we screened these for relevance to our study aims and conducted a thematic analysis of relevant comments. RESULTS: Of 531 completed surveys, 129 (24%) respondents provided written comments, of whom 104 mentioned conditions they felt to be necessary to provide EPC. Four key themes were identified: 1) Clear delineation of roles of primary and specialized palliative care physicians-all physicians should be empowered to provide primary palliative care, with specialists providing additional support; 2) Shared care with needs-dependent referral-primary and specialized palliative care physicians should work collaboratively, with referral to specialized palliative care based on need rather than on prognosis; 3) Adequate resources to support primary palliative care-education, financial incentives, and collaboration with interdisciplinary team members such as nurses and specialized providers were specifically mentioned; 4) Addressing the misconception that palliative care equals end-of-life care-there was particular emphasis on education of both healthcare providers and the public. CONCLUSION: Changes are necessary at the level of palliative care referral systems, providers, resources, and policy to enable implementation of EPC.

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

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).

Family physicians' involvement in palliative cancer care.

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.

Public interest in medical assistance in dying and palliative care.

OBJECTIVES: Medical assistance in dying (MAiD) is legal in an increasing number of countries, but there are concerns that its availability may compromise access to palliative care. We assessed public interest in MAiD, palliative care, both, or neither, and examined characteristics associated with this interest. METHODS: We surveyed a representative sample of the adult Canadian public, accessed through a panel from May to June 2019. Weighted generalised multinomial logistic regression analyses were used to determine characteristics associated with interest in referral to palliative care, MAiD, or both, in the event of diagnosis with a serious illness. RESULTS: Of 1362 participants who had heard of palliative care, 611 (44.8% weighted (95% CI 42.1% to 47.5%)) would be interested in both MAiD and palliative care, 322 (23.9% (95% CI 21.5% to 26.2%)) palliative care alone, 171 (12.3% (95% CI 10.5% to 14.1%)) MAiD alone and 258 (19.0% (95% CI 16.9% to 21.2%)) neither. In weighted multinomial logistic regression analyses, interest in both MAiD and palliative care (compared with neither) was associated with better knowledge of the definition of palliative care, older age, female gender, higher education and less religiosity; interest in palliative care alone was associated with better knowledge of the definition of palliative care, older age, female gender and being married/common law; interest in MAiD alone was associated with less religiosity (all p<0.05). CONCLUSIONS: There is substantial public interest in potential referral to both MAiD and palliative care. Simultaneous availability of palliative care should be ensured in jurisdictions where MAiD is legal, and education about palliative care should be a public health priority.

Impact of early palliative care according to baseline symptom severity: Secondary analysis of a cluster-randomized controlled trial in patients with advanced cancer.

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.

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

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 (ßindirect effect=0.05) or through greater quality of life (ßindirect effect=0.02). At 4 months, EPC increased satisfaction through improved quality of life (ßindirect 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 (ßindirect effect=0.13-0.16) and through reduced psychological symptoms and/or improved quality of life (ßindirect effect=0.00-0.02). At 4 months, improved preparation for end-of-life mediated EPC effects on satisfaction by enhancing quality of life (ßindirect effect=0.01) or by reducing psychological symptoms and thereby increasing quality of life (ßindirect 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.

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.

Public knowledge and attitudes concerning palliative care.

OBJECTIVE: WHO recommends early integration of palliative care alongside usual care to improve quality of life, although misunderstanding of palliative care may impede this. We compared the public's perceived and actual knowledge of palliative care, and examined the relationship of this knowledge to attitudes concerning palliative care. METHODS: We analysed data from a survey of a representative sample of the Canadian public, accessed through a survey panel in May-June 2019. We compared high perceived knowledge ('know what palliative care is and could explain it') with actual knowledge of the WHO definition (knew ≥5/8 components, including that palliative care can be provided early in the illness and together with life-prolonging treatments), and examined their associations with attitudes to palliative care. RESULTS: Of 1518 adult participants residing in Canada, 45% had high perceived knowledge, of whom 46% had high actual knowledge. Participants with high (vs low) perceived knowledge were more likely to associate palliative care with end-of-life care (adjusted OR 2.15 (95% CI 1.66 to 2.79), p<0.0001) and less likely to believe it offered hope (0.62 (95% CI 0.47 to 0.81), p=0.0004). Conversely, participants with high (vs low) actual knowledge were less likely to find palliative care fearful (0.67 (95% CI 0.52 to 0.86), p=0.002) or depressing (0.72 (95% CI 0.56 to 0.93), p=0.01) and more likely to believe it offered hope (1.88 (95% CI 1.46 to 2.43), p<0.0001). CONCLUSIONS: Stigma regarding palliative care may be perpetuated by those who falsely believe they understand its meaning. Public health education is needed to increase knowledge about palliative care, promote its early integration and counter false assumptions.

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.

Systemic Anti-Cancer Therapy Use in Palliative Care Outpatients With Advanced Cancer.

PURPOSE: To evaluate factors associated with continuation of systemic anti-cancer therapy (SACT) after palliative care consultation, and SACT administration in the last 30 days of life, in outpatients with cancer referred to palliative care. Timing of referral was of particular interest. METHODS: Patient, disease, and treatment-related factors associated with SACT before and after palliative care, and in the last 30 days of life, were identified using 3-level multinomial logistic regression. Referral to palliative care was categorized by time from death as early (>12 months), intermediate (6-12 months), and late (≤6 months). RESULTS: Of the 337 patients, 240 (71.2%) received SACT for advanced cancer; of these, 126 (52.5%) received SACT only prior to palliative care while 114 (47.5%) also received SACT afterward. Only 35/337 (10.4%) received SACT in the last 30 days of life. On multivariable analysis, factors associated with continuing SACT after palliative care consultation were a cancer diagnosis for <1 year (OR 3.09, p = 0.01), breast primary (OR 11.88, p = 0.0008), and early (OR 28.8, p < 0.001) or intermediate (OR 6.67, p < 0.001) referral timing. No factors were significantly associated with receiving SACT in the last 30 days versus earlier, but the median time from palliative care referral to death in those receiving SACT in the last 30 days versus stopping SACT earlier was 1.78 versus 4.27 months. CONCLUSION: Patients who received SACT following palliative care consultation were more likely to be referred early; however, patients receiving SACT in their last 30 days tended to be referred late.

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.

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.

"I'm going to push this door open. You can close it": A qualitative study of the brokering work of oncology clinic nurses in introducing early palliative care.

BACKGROUND: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. AIM: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses. DESIGN: A constructivist qualitative grounded theory study was conducted. SETTING/PARTICIPANTS: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center. RESULTS: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door-creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust-establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions-addressing patients' assumptions about palliative care as signifying death; and advocating with oncologists-seeding the process of referral by bringing patients' concerns forward. CONCLUSION: Oncology nurses play a central role in "brokering" the introduction of early palliative care; this process is supported by their relational proximity to patients and their location "in between" the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.

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.

Symptom Assessment in Patients with Advanced Cancer: Are the Most Severe Symptoms the Most Bothersome?

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.

Experiences and Expectations of Bereavement Contact among Caregivers of Patients with Advanced Cancer.

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.