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PURPOSE Patients with advanced cancer often have unrealistic expectations about prognosis and treatment. This study assessed the effect of an oncology nurse-led primary palliative care intervention on illness expectations among patients with advanced cancer. METHODS This study is a secondary analysis of a cluster-randomized trial of primary palliative care conducted at 17 oncology clinics. Adult patients with advanced solid tumors for whom the oncologist would not be surprised if died within 1 year were enrolled. Monthly visits were designed to foster realistic illness expectations by eliciting patient concerns and goals for their medical care and empowering patients and families to engage in discussions with oncologists about treatment options and preferences. Baseline and 3-month questionnaires included questions about life expectancy, treatment intent, and terminal illness acknowledgment. Odds of realistic illness expectations at 3 months were adjusted for baseline responses, patient demographic and clinical characteristics, and intervention dose. RESULTS Among 457 primarily White patients, there was little difference in realistic illness expectations at 3 months between intervention and standard care groups: 12.8% v 11.4% for life expectancy (adjusted odds ratio [aOR] 5 1.15; 95% CI, 0.59 to 2.22; P 5 .684); 24.6% v 33.3% for treatment intent (aOR 5 0.76; 95% CI, 0.44 to 1.27; P 5 .290); 53.6% v 44.7% for terminal illness acknowledgment (aOR 5 1.28; 95% CI, 0.81 to 2.00; P 5 .288). RESULTS did not differ when accounting for variation in clinic sites or intervention dose. CONCLUSION Illness expectations are difficult to change among patients with advanced cancer. Additional work is needed to identify approaches within oncology practices that foster realistic illness expectations to improve patient decision making. [ABSTRACT FROM AUTHOR]

PURPOSE African American patients with cancer underutilize advance care planning (ACP) and palliative care (PC). This feasibility study investigated whether community health workers (CHWs) could improve ACP and PC utilization for African American patients with advanced cancer. METHODS African American patients diagnosed with an advanced solid organ cancer (stage IV or stage III disease with a palliative performance score < 60%) were enrolled. Patients completed baseline surveys that assessed symptom burden and distress at baseline and 3 months post-CHW intervention. The CHW intervention consisted of a comprehensive assessment of multiple PC domains and social determinants of health. CHWs provided tailored support and education on the basis of iterative assessment of patient needs. Intervention feasibility was determined by patient and caregiver retention rate above 50% at 3 months. RESULTS Over a 12-month period, 24 patients were screened, of which 21 were deemed eligible. Twelve patients participated in the study. Patient retention was high at 3 months (75%) and 6 months (66%). Following the CHW intervention, symptom assessment as measured by Edmonton Symptom Assessment System improved from 33.8 at baseline to 18.8 (P = .03). Psychological distress improved from 5.5 to 4.7 (P = .36), and depressive symptoms from 42.2 to 33.6 (P = .09), although this was not significant. ACP documentation improved from 25% at baseline to 75% at study completion. Sixty-seven percentage of patients were referred to PC, with 100% of three decedents using hospice. CONCLUSION Utilization of CHWs to address PC domains and social determinants of health is feasible. Although study enrollment was identified as a potential barrier, most recruited patients were retained on study. [ABSTRACT FROM AUTHOR]

Background: Preoperative advance care planning (ACP) may benefit patients undergoing major surgery. Objective: To evaluate feasibility, safety, and early effectiveness of video-based ACP in a surgical population. Design: Randomized controlled trial with two study arms. Setting: Single, academic, inner-city tertiary care hospital. Subjects: Patients undergoing major cancer surgery were recruited from nine surgical clinics. Of 106 consecutive potential participants, 103 were eligible and 92 enrolled. Interventions: In the intervention arm, patients viewed an ACP video developed by patients, surgeons, palliative care clinicians, and other stakeholders. In the control arm, patients viewed an informational video about the hospital's surgical program. Measurements: Primary Outcomes—ACP content and patient-centeredness in patient–surgeon preoperative conversation. Secondary outcomes—patient Hospital Anxiety and Depression Scale (HADS) score; patient goals of care; patient and surgeon satisfaction; video helpfulness; and medical decision maker designation. Results: Ninety-two patients (target enrollment: 90) were enrolled. The ACP video was successfully integrated with no harm noted. Patient-centeredness was unchanged (incidence rate ratio [IRR] = 1.06, confidence interval [0.87–1.3], p = 0.545), although there were more ACP discussions in the intervention arm (23% intervention vs. 10% control, p = 0.18). While slightly underpowered, study results did not signal that further enrollment would have yielded statistical significance. There were no differences in secondary outcomes other than the intervention video was more helpful (p = 0.007). Conclusions: The ACP video was successfully integrated into surgical care without harm and was thought to be helpful, although video content did not significantly change the ACP content or patient–surgeon communication. Future studies could increase the ACP dose through modifying video content and/or who presents ACP. Trial Registration: clinicaltrials.gov Identifier NCT02489799. [ABSTRACT FROM AUTHOR]

Background: African Americans in the United States have worse end-of-life care and cancer outcomes than whites. Palliative care may improve this disparity. Community Health Workers may provide a means to improve palliative care disparities. Methods: Semistructured in-depth interviews (five) and stakeholder focus groups (four) were conducted with cancer patients, caregivers, health care administrators, oncologists, and community health workers (CHWs). Patients were recruited through snowball sampling. Three raters coded interviews independently. Data were analyzed using interpretative phenomenological analysis. Results: Seventy-one individuals were contacted to participate with 24 stakeholders (34%) participating in individual interviews or across 4 stakeholder engagements. Eleven constructs were identified and grouped in three broader themes: "hub of the wheel," understanding palliative care, and patient–provider relationships. Participants felt that the role of a CHW should be central, bridging patients with their providers, information, and resources, including psychosocial support and advance care planning documents. They also placed an emphasis on the background of CHWs, saying individuals selected should be familiar with the history, culture, and norms of the communities from which they operate. Stakeholders reported that a CHW could activate a patient to contact their primary care physician or oncologist who may refer to or provide palliative care. Stakeholders reported that given the barriers to palliative care, a CHW could contribute to patient-centered multidisciplinary care while addressing palliative care domains with patients and families in a culturally sensitive manner. Conclusion: Based on feedback from patients, caregivers, and providers, a culturally adapted CHW intervention may improve palliative care use for African American patients with advanced malignancies. [ABSTRACT FROM AUTHOR]

Background: Patient-centered outcomes research (PCOR) methods and social learning theory (SLT) require intensive interaction between researchers and stakeholders. Advance care planning (ACP) is valuable before major surgery, but a systematic review found no extant perioperative ACP tools. Consequently, PCOR methods and SLT can inform the development of an ACP educational video for patients and families preparing for major surgery. Objective: The objective is to develop and test acceptability of an ACP video storyline. Design: The design is a stakeholder-guided development of the ACP video storyline. Design-thinking methods explored and prioritized stakeholder perspectives. Patients and family members evaluated storyboards containing the proposed storyline. Setting/Subjects: The study was conducted at hospital outpatient surgical clinics, in-person stakeholder summit, and the 2014 Maryland State Fair. Measurements: Measurements are done through stakeholder engagement and deidentified survey. Results: Stakeholders evaluated and prioritized evidence from an environmental scan. A surgeon, family member, and palliative care physician team iteratively developed a script featuring 12 core themes and worked with a medical graphic designer to translate the script into storyboards. For 10 days, 359 attendees of the 2014 Maryland State Fair evaluated the storyboards and 87% noted that they would be 'very comfortable' or 'comfortable' seeing the storyboard before major surgery, 89% considered the storyboards 'very helpful' or 'helpful,' and 89% would 'definitely recommend' or 'recommend' this story to others preparing for major surgery. Conclusions: Through an iterative process utilizing diverse PCOR engagement methods and informed by SLT, storyboards were developed for an ACP video. Field testing revealed the storyline to be highly meaningful for surgery patients and family members. [ABSTRACT FROM AUTHOR]

Recent data suggest that we are not successfully getting the message across about the importance of advance care planning for patients who have a life-ending illness. Half to three-quarters of patients with incurable cancer think that they might be cured by chemotherapy, radiation, or surgery. The source of this denial may lie with them, it may be traceable to their physicians, or it may be a combination of the two. This avoidance has consequences, since those patients with "prognostic awareness" have end-of-life care pathways that involve little use of the hospital, ICU, end-of-life chemo, or "codes" with almost no chance of success, and much more dying at home with hospice care. If we can successfully initiate advance care planning discussions with our patients and families, their end-of-life processes will improve, resulting in better care, less use of the hospital, and more honoring of newly discerned choices. We show how this can be done in regular oncology practice by introducing the Johns Hopkins "Palliative Care Temporary Tattoo" and by providing some ways to discuss car-diopulmonary resuscitation in settings where it will not be helpful. [ABSTRACT FROM AUTHOR]

Palliative care provides open and honest communication, medically appropriate goal setting, and meticulous attention to symptom assessment and control. The Physicians Orders for Life Sustaining Treatment (POLST) is a growing movement to allow health care providers to indicate, with their patients, what they want done in specific situations, such as feeding tubes, mechanical ventilation, or transfer to an intensive care unit. We have developed an internal signout tool used by palliative medicine fellows in our institution to specify similar interventions—or not—with seriously ill palliative care patients, the Providers Signout for Scope of Treatment (PSOST). We have found that this situation-specific tool enables smooth transitions of care on nights and weekends, especially when the patient is near death, and may help prevent both overescalation of care and underuse of life saving treatments such as resuscitation. The PSOST differs from other signout tools in that it gives clear direction regarding the patient's medical goals and desire for escalation of care, or not. We present it here for open access and use anywhere. This tool has also assisted in building team communication with the nursing shifts, especially nights and weekends, as all team members are able to deliver a consistent message, while meeting the goals of care for patients and families. We believe this tool could be useful with a broader patient population, outside of Palliative Medicine, to provide clearer direction for hospitalized or nursing home patients whose care is often directed by multiple providers. It could also be used as a template for signouts on other inpatient services, as care goals are important for all patients. [ABSTRACT FROM AUTHOR]

The article discusses the findings of a review identifying patients with metastatic solid tumors and hematologic malignancies, who were admitted to an intensive care unit (ICU) and expired inpatient between January 1, 2017 and December 31, 2018. Topics covered include the criteria for patient inclusion in the review, results which show that only a minority of patients discussed goals of care or code status with their outpatient oncologists and that few engage in advance care planning.

In 'Avoiding a Death Panel Redux,' Nicole Piemonte and Laura Hermer make the argument that the advance care planning consultation provision during the health care reform debate collapsed both because the language in the provision was deliberately misread and because some features of the language could in fact be misleading. We agree on both counts. We add that the cost-effectiveness provisions of the bill make us face difficult decisions we as a nation would rather avoid, but can and must face squarely and together. It is time for an honest national conversation about at least two issues concerning medical care near the end of life. First, talking about or planning a good death with your doctor or nurse will not make death happen sooner. The data show that better planning for a well-managed terminal illness leads to longer life as well as better symptom control and less distress. Second, we need to quickly and directly confront the cost of end of life care in the United State, recognize the political consequences, and work with the broad middle to advance the common good. [ABSTRACT FROM AUTHOR]

Palliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood. To determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer. In this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0–48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0–21; HADS-D, range 0–21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0–189). We enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07–0.29, P = 0.90), depression (adjusted mean difference -0.22, 95% CI -0.97–0.55, P = 0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25–1.43, P = 0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95–17.77, P = 0.030). Caregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions. [ABSTRACT FROM AUTHOR]