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Context: Prognostication challenges contribute to delays in advance care planning (ACP) for patients with cancer near the end of life (EOL)., Objectives: Examine a quality improvement mortality prediction algorithm intervention's impact on ACP documentation and EOL care., Methods: We implemented a validated mortality risk prediction machine learning model for solid malignancy patients admitted from the emergency department (ED) to a dedicated solid malignancy unit at Duke University Hospital. Clinicians received an email when a patient was identified as high-risk. We compared ACP documentation and EOL care outcomes before and after the notification intervention. We excluded patients with intensive care unit (ICU) admission in the first 24 hours. Comparisons involved chi-square/Fisher's exact tests and Wilcoxon rank sum tests; comparisons stratified by physician specialty employ Cochran-Mantel-Haenszel tests., Results: Preintervention and postintervention cohorts comprised 88 and 77 patients, respectively. Most were White, non-Hispanic/Latino, and married. ACP conversations were documented for 2.3% of hospitalizations preintervention vs. 80.5% postintervention (P<0.001), and if the attending physician notified was a palliative care specialist (4.1% vs. 84.6%) or oncologist (0% vs. 76.3%) (P<0.001). There were no differences between groups in length of stay (LOS), hospice referral, code status change, ICU admissions or LOS, 30-day readmissions, 30-day ED visits, and inpatient and 30-day deaths., Conclusion: Identifying patients with cancer and high mortality risk via machine learning elicited a substantial increase in documented ACP conversations but did not impact EOL care. Our intervention showed promise in changing clinician behavior. Further integration of this model in clinical practice is ongoing., (Published by Elsevier Inc.)

Context: Early specialist palliative care (PC) involvement in metastatic non-small cell lung cancer (mNSCLC) is associated with improved quality of life, less aggressive end of life (EoL) care, and longer survival. As treatment paradigms for NSCLC have evolved, PC utilization remains low., Objectives: This work examines how the timing and extent of PC involvement impacts outcomes and the patient experience in mNSCLC in the era of immunotherapy., Methods: This retrospective review analyzed patients with mNSCLC who initiated first-line treatment with chemotherapy, immunotherapy, or combined chemoimmunotherapy at Duke University between March 2015 and July 2019. PC consultation and outcomes data were abstracted through November 2022. EoL care variables were analyzed using descriptive statistics., Results: 152 patients were stratified based on whether PC was consulted during their disease course. 80 patients (53%) never saw PC, while the 72 patients (47%) who saw PC were further stratified by time to first PC encounter and total number of PC visits. 31% were seen within two months of diagnosis (early), 33% between two and six months (intermediate), and 36% after 6 months (late). Patients who received early PC had longer median time on hospice (35 days), had lower rates of aggressive EoL care (43%), and experienced less frequent in-hospital death (14%) compared to other groups., Conclusion: This real-world study reveals that referrals to PC still occur late or not at all in mNSCLC despite demonstrated benefits of early PC integration. Early outpatient PC referrals resulted in longer time on hospice, lower frequency of aggressive EoL care, and lower rates of in-hospital death., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Palliative Care (PC) is poorly understood by laypersons. However, little is known about what ambulatory patients with cancer understand about PC or what barriers to access exist., Methods: Outpatients undergoing cancer treatment completed a survey evaluating their familiarity and knowledge of PC, Palliative Care Knowledge Scale (PaCKS), feelings towards PC (before and after reading a definition of PC), barriers to PC, and prognostic understanding. We summarized responses descriptively and used logistic regression models to examine variables associated with familiarity and interest., Results: The survey response rate was 32%. Of 151 participants, 58.9% reported familiarity with PC. The average PaCKs score was 11.9 out of 13 (standard deviation, 1.4), with 46.4% receiving a perfect score, indicating high knowledge of PC. Patients diagnosed more than one year ago had significantly increased odds of being familiar with PC (OR 2.93; 95% CI 1.37-6.25). More participants reported future interest in PC compared to current interest (74.2% vs 44.4%, respectively). Patients with stage III or IV cancer had significantly increased odds of having a current interest in receiving PC compared to patients with stage I or II disease (OR 2.66; 95% CI: 1.05, 6.76). Participants reported feeling significantly less anxious and more reassured after reading a standardized definition of PC (P < 0.05)., Conclusion: Outpatients with cancer who are being treated at a large academic cancer center exhibit high awareness and knowledge of PC, but anxiety toward PC persists. Factors beyond knowledge may perpetuate the delayed or lack of involvement with PC., Key Message: In this cross-sectional study of outpatients with cancer, findings suggest that high knowledge of PC may co-exist with a lingering uneasiness towards the service. Additionally, factors beyond knowledge, such as logistic barriers, anxiety, and oncologists' preference may be perpetuating the delay or lack of involvement in PC., Competing Interests: Disclosures and Acknowledgments Dr. LeBlanc's work on palliative care and patient experience issues in hematology is supported in part by a scholar in Clinical Research Award from the Leukemia and Lymphoma Society. Ms. Schlichte's effort was supported by the Snydermann/Moore scholars in health care scholarship offered to Duke School of medicine students. The statements presented in this article are solely the responsibility of the author(s) and do not necessarily represent the views of the Snydermann/Moore Scholars in health care scholarship committee. TWL has received honoraria for consulting/advisory boards from AbbVie, Agilix, Agios/Servier, Astellas, AstraZeneca, Beigene, BlueNote, BMS/Celgene, CareVive, Flatiron, Genentech, GSK, Lilly, Meter Health, Novartis, and Pfizer; speaking related honoraria from AbbVie, Agios, Astellas, BMS/Celgene, and Incyte; equity interest in Dosentrx; research funding from the AbbVie, American Cancer Society, AstraZeneca, BMS, Deverra Therapeutics, Duke University, Jazz Pharmaceuticals, the Leukemia and Lymphoma Society, the National Institute of Nursing Research/ National Institutes of Health, and Seattle Genetics. LMS, JH, SW, KWH, and JDT all declare no conflicts of interest., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility., Objective: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness., Methods: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care., Results: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations., Conclusions: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Palliative care integration for patients with hematologic diseases has lagged behind solid-organ malignancies. Previous work has characterized hematologist perspectives, but less is known about palliative care physician views of this phenomenon., Objectives: To examine palliative care physician attitudes and beliefs regarding hematologic diseases, patient care, and collaboration., Methods: A 44-item survey containing Likert and free-response items was mailed to 1000 AAHPM physician members. Sections explored respondent comfort with specific diagnoses, palliative care integration, relationships with hematologists, and hematology-specific patient care. Logistic regression models with generalized estimating equations were used to compare parallel Likert responses. Free responses were analyzed using thematic analysis., Results: The response rate was 55.5%. Respondents reported comfort managing symptoms in leukemia (84.0%), lymphoma (92.1%), multiple myeloma (92.9%), and following hematopoietic stem cell transplant (51.6%). Fewer expressed comfort with understanding disease trajectory (64.9%, 75.7%, 78.5%, and 35.4%) and discussing prognosis (71.0%, 82.6%, 81.6%, and 40.6%). 97.6% of respondents disagreed that palliative care and hematology are incompatible. 50.6% felt that palliative care physicians' limited hematology-specific knowledge hinders collaboration. 89.4% felt that relapse should trigger referral. 80.0% felt that hospice referrals occurred late. In exploring perceptions of hematology-palliative care relationships, three themes were identified: misperceptions of palliative care, desire for integration, and lacking a shared model of understanding., Conclusion: These data inform efforts to integrate palliative care into hematologic care at large, echoing previous studies of hematologist perspectives. Palliative care physicians express enthusiasm for caring for these patients, desire for improved understanding of palliative care, and ongoing opportunities to improve hematology-specific knowledge and skills., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Negative attitudes toward hospice care might prevent patients with cancer from discussing and choosing hospice as they approach end of life. When making a decision, people often naturally focus on either expected benefits or the avoidance of harm. Behavioral research has demonstrated that framing information in an incongruent manner with patients' underlying motivational focus reduces their negative attitudes toward a disliked option., Objective: Our study tests this communication technique with cancer patients, aiming to reduce negative attitudes toward a potentially beneficial but often-disliked option, that is, hospice care., Methods: Patients (n = 42) with active cancer of different types and/or stages completed a paper survey. Participants read a vignette about a patient with advanced cancer and a limited prognosis. In the vignette, the physician's advice to enroll in a hospice program was randomized, creating a congruent message or an incongruent message with patients' underlying motivational focus (e.g., a congruent message for someone most interested in benefits focuses on the benefits of hospice, whereas an incongruent message for this patient focuses on avoiding harm). Patients' attitudes toward hospice were measured before and after receiving the physician's advice., Results: Regression analyses indicated that information framing significantly influenced patients with strong initial negative attitudes. Patients were more likely to reduce intensity of their initial negative attitude about hospice when receiving an incongruent message (b = -0.23; P < 0.01) than a congruent one (b = -0.13; P = 0.08)., Conclusion: This finding suggests a new theory-driven approach to conversations with cancer patients who may harbor negative reactions toward hospice care., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Patients with acute leukemias likely have needs that palliative care can respond to, yet little is known about specific challenges they face, particularly during active treatment. We examined acute myeloid leukemia (AML) patients' expressed challenges and supports after intensive induction chemotherapy., Objectives: We aimed to understand opportunities for palliative care interventions in this population., Methods: We conducted a qualitative study of AML patients with high-risk disease at Duke University Hospital, Durham, NC. Patients were interviewed about care experiences approximately 3 months after treatment initiation. Multiple coders used descriptive content analysis to identify common and recurrent themes., Results: We analyzed 22 patient transcripts. Sample demographics included 10 (45.5%) females, 12 (54.5%) males, mean age 62 (SD 10.9), 19 (86.4%) non-Hispanic white, and three (13.6%) nonwhite/non-Hispanic. All had high-risk disease, by age, relapse status, or molecular markers. We identified four themes in our analysis: physical symptoms, psychological issues, uncertainty regarding prognosis, and patients' sources of support. Specific challenges noted by patients included feelings of helplessness/hopelessness, activity restriction, fatigue, fevers, caregiver stress, and lack of clarity regarding treatment decision making., Conclusion: AML patients face substantial challenges regarding physical symptoms, psychological distress, and uncertainty regarding prognosis. These challenges signal needs for which palliative care in high-risk AML patients may help. Our findings highlight opportunities to develop targeted palliative care interventions addressing unmet needs in AML patients., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. All rights reserved.)

Context: Hematologic cancer patients use palliative care services less frequently than their solid tumor counterparts. Prior work suggests that these patients have a sizable symptom burden, but comparisons between hematologic and solid tumor patients near the end of life are limited., Objectives: To compare unmet symptom needs in a cohort of hematologic and solid tumor patients referred to specialty palliative care services., Methods: Using a novel data registry of initial palliative care encounters, we performed a cross-sectional analysis of cancer patients receiving care across 17 sites within the Global Palliative Care Quality Alliance. We compared clinically-significant symptoms (rated as four or greater in severity) between hematologic and solid tumor patients and performed multivariate logistic regression analyses examining the relationship between symptom burden and tumor type., Results: We identified 1235 cancer patients, 108 of which had hematologic malignancies. Pain, dyspnea, nausea, and anorexia burden were as high among patients with hematologic as those with solid malignancies. Blood cancer patients had higher rates of clinically-significant tiredness (51% vs. 42%; P = 0.03) than solid tumor patients. Finally, blood cancer patients had greater odds of being tired (odds ratio 2.19; CI 1.22-3.91) and drowsy (odds ratio 1.81; CI 1.07-3.07) than solid tumor patients independent of age, gender, race, and performance status., Conclusions: Hematologic and solid tumor patients have significant symptom burden at time of referral to palliative care services. Blood cancer patients may have unique concerns warranting targeted attention, including substantial drowsiness and tiredness. Our findings suggest a need to optimize palliative care usage in the hematologic cancer population., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Measuring What Matters (MWM) prioritizes quality measures in palliative care practice. Hematologic malignancy patients are less likely to access palliative care, yet little is known about their unique needs. Differences in MWM adherence may highlight opportunities to improve palliative care in hematology., Objectives: To assess adherence to MWM measures by palliative care clinicians caring for patients with hematologic malignancies, compared to those with solid tumors., Methods: We used the Quality Data Collection Tool to assess completion of MWM measures across nine sites., Results: We included data from 678 patients' first visits and various care settings; 64 (9.4%) had a hematologic malignancy, whereas 614 (90.6%) had a solid tumor. Hematology patients were more likely to be seen in a hospital (52 or 81.3% vs. 420 or 68%), whereas solid tumor patients were more frequently seen at home or in clinics (160 or 26% vs. 7 or 10.9%). Of the nine MWM measures we assessed, high adherence (>90%) was seen regardless of tumor type in measures #3 (Pain Treatment), #7 (Spiritual Concerns), #8 (Treatment Preferences), and #9 (Care Consistent With Preferences). Clinicians seeing hematology patients were significantly less likely to meet measures #2 (Screening for Physical Symptoms; 57.8% vs. 84.2%, P < 0.001), and #5 (Discussion of Emotional Needs; 56.3% vs. 70.0%, P = 0.03)., Conclusion: MWM adherence regarding symptom assessment and meeting emotional needs was lower for patients with hematologic malignancies compared to those with solid tumors. This finding suggests two key areas for quality improvement initiatives in palliative care for patients with hematologic malignancies., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Anticholinergic drugs can cause several side effects, impairing cognition and quality of life (QOL). Cancer patients are often exposed to increasing cumulative anticholinergic load (ACL) as they approach death, but this burden has not been examined in patients with nonmalignant diseases., Objectives: To determine ACL and its impact in noncancer versus cancer palliative care patients., Methods: We performed a secondary analysis of 244 subjects enrolled in a randomized controlled trial. ACL was quantified with the Anticholinergic Drug Scale. We used multivariable regression to calculate the effect of ACL on key outcomes, including drowsiness, fatigue, and QOL. Patients were stratified by diagnosis, and drugs were grouped as symptom management (SM) or disease management (DM)., Results: Overall, ACL in cancer and noncancer patients was not significantly different (2.6 vs. 2.4; P = 0.23). SM drugs caused greater anticholinergic exposure than DM drugs in both cancer and noncancer patients (2.3 vs. 0.5, and 1.5 vs. 1.3, respectively; both P < 0.05); however, DM drugs exposed noncancer patients to relatively more ACL than cancer patients (1.2 vs. 0.6, P < 0.0001). ACL was associated with worse fatigue (odds ratio, 1.08; CI, 1.002-1.17) and worse QOL (odds ratio, 0.89; CI, 0.80-0.98)., Conclusions: ACL is associated with worse fatigue and QOL and may not differ significantly between cancer and noncancer patients nearing end of life. SM drugs are more responsible for ACL in cancer and noncancer patients, although DM drugs contribute significantly to ACL in the latter group. We recommend more attention to reducing anticholinergic use in all patients with life-limiting illness., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: The Patient Care Monitor (PCM), version 2.0, is an electronic patient-reported outcomes instrument designed to be embedded into oncology practices. One key psychometric component of an instrument is its factor structure., Objectives: To validate the factor structure of the PCM., Methods: The PCM was administered within various oncology clinics at our institution from 2006 to 2011 as part of standard of care, yielding a large (n = 5624) and diverse data set. An exploratory factor analysis was performed., Results: The PCM performed well in terms of missing values and floor and ceiling effects. The three scales postulated by the PCM developers exhibited high internal consistency (Cronbach alpha 0.94-0.95); the six subscales exhibited good internal consistency (Cronbach alpha 0.80-0.95). A three-factor model approximated simple structure and was consistent with the constructs of emotional function, physical function, and physical symptoms suggested by the PCM developers. However, a six-factor model did not support the division of these three constructs into subscales of despair, distress, ambulation, impaired performance, treatment side effects, and general physical symptoms. Instead, we observed an emotional factor, a physical functioning factor, a factor including many of the treatment side effects, and three factors consisting of various clusters of physical symptoms., Conclusion: Although six subscales postulated by its developers perform reasonably, allocation of the PCM items to three constructs is more accurate and likely more consistent with how symptoms and concerns are conceptualized by patients., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: As endorsed by the palliative care "Measuring What Matters" initiative, capturing patients' direct assessment of their care is essential for ongoing quality reporting and improvement. Fostering an environment where seriously ill patients feel heard and understood is of crucial importance to modern health care., Objectives: To describe the development and performance of a self-report field measure for seriously ill patients to report how well they feel heard and understood in the hospital environment., Methods: As part of a larger ongoing cohort study of inpatient palliative care, we developed and administered the following point-of-care item: "Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?" (completely, quite a bit, moderately, slightly, not at all). Participants completed the measure before and the day after palliative care consultation. For the postconsultation version, we changed the time frame from "past two days" to "today.", Results: One hundred sixty patients with advanced cancer completed the preconsultation assessment, and 87% of them completed the postconsultation version. Responses encompassed full use of the ordinal scale, did not exhibit ceiling or floor effects, and showed improvement from preassessment to postassessment. The item was quick to administer and easy for patients to complete., Conclusion: The "Heard & Understood" item is a promising self-report quality measure for the inpatient palliative care setting., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: The cancer anorexia-cachexia syndrome (CACS) is common in patients with advanced solid tumors and is associated with adverse outcomes including poor quality of life (QOL), impaired functioning, and shortened survival., Objectives: To apply the recently posed weight-based international consensus CACS definition to a population of patients with advanced non-small cell lung cancer (NSCLC) and explore its impact on patient-reported outcomes., Methods: Ninety-nine patients participated in up to four study visits over a six-month period. Longitudinal assessments included measures of physical function, QOL, and other clinical variables such as weight and survival., Results: Patients meeting the consensus CACS criteria at Visit 1 had a significantly shorter median survival (239.5 vs. 446 days; hazard ratio, 2.06, P < 0.05). Physical function was worse in the CACS group (mean Karnofsky Performance Status score 68 vs. 77, Eastern Cooperative Oncology Group Performance Status score 1.8 vs. 1.3, P < 0.05 for both), as was QOL (Functional Assessment of Cancer Therapy-General [FACT-G] Lung Cancer subscale of 17.2 vs. 19.9, Anorexia/Cachexia subscale of 31.4 vs. 37.9, P < 0.05 for both). Differences in the FACT-G and the Functional Assessment of Chronic Illness Therapy-Fatigue subscale approached but did not reach statistical significance. Longitudinally, all measures of physical function and QOL worsened regardless of CACS status, but the rate of decline was more rapid in the CACS group., Conclusion: The weight-based component of the recently proposed international consensus CACS definition is useful in identifying patients with advanced NSCLC who are likely to have significantly inferior survival and who will develop more precipitous declines in physical function and QOL. This definition may be useful for clinical screening purposes and identify patients with high palliative care needs., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Although much is known about solid tumor patients who use hospice, the hematologic malignancies hospice population is inadequately described., Objectives: To compare the characteristics and outcomes of hospice patients with hematologic malignancies to those with solid tumors., Methods: We extracted electronic patient data (2008-2012) from a large hospice network (Coalition of Hospices Organized to Investigate Comparative Effectiveness) and used bivariate analyses to describe between-group differences., Results: In total, 48,147 patients with cancer were admitted during the study period; 3518 (7.3%) had a hematologic malignancy. These patients had significantly worse Palliative Performance Scale scores (32% vs. 24% were below 40; P < 0.001) and shorter lengths of stay (median 11 vs. 19 days; P < 0.001). They were more likely to die within 24 hours of hospice enrollment (10.9% vs. 6.8%; odds ratio [OR] 1.66; 95% CI 1.49, 1.86; P < 0.001) or within seven days (36% vs. 25.1%; OR 1.68; 95% CI 1.56, 1.81; P < 0.001) and were more likely to receive hospice services in an inpatient or nursing home setting (OR 1.34; 95% CI 1.16, 1.56 and OR 1.54; 95% CI 1.39, 1.72; both P < 0.001). Among hematologic malignancy patients, those with leukemia had the shortest survival (hazard ratio 1.23; 95% CI 1.13, 1.34; P < 0.001), and 40.3% used hospice for less than seven days (OR 1.31; 95% CI 1.11, 1.56; P = 0.002)., Conclusion: Hospice patients with hematologic malignancies are more seriously ill at the time of admission, with worse functional status and shorter lengths of stay than other cancer patients. Differences in outcomes suggest the need for targeted interventions to optimize hospice services for the hematologic malignancies population, especially those with leukemia., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)