Equity in Using Artificial Intelligence Mortality Predictions to Target Goals of Care Documentation.

BACKGROUND: Artificial intelligence (AI) algorithms are increasingly used to target patients with elevated mortality risk scores for goals-of-care (GOC) conversations. OBJECTIVE: To evaluate the association between the presence or absence of AI-generated mortality risk scores with GOC documentation. DESIGN: Retrospective cross-sectional study at one large academic medical center between July 2021 and December 2022. PARTICIPANTS: Hospitalized adult patients with AI-defined Serious Illness Risk Indicator (SIRI) scores indicating > 30% 90-day mortality risk (defined as "elevated" SIRI) or no SIRI scores due to insufficient data. INTERVENTION: A targeted intervention to increase GOC documentation for patients with AI-generated scores predicting elevated risk of mortality. MAIN MEASURES: Odds ratios comparing GOC documentation for patients with elevated or no SIRI scores with similar severity of illness using propensity score matching and risk-adjusted mixed-effects logistic regression. KEY RESULTS: Among 13,710 patients with elevated (n = 3643, 27%) or no (n = 10,067, 73%) SIRI scores, the median age was 64 years (SD 18). Twenty-five percent were non-White, 18% had Medicaid, 43% were admitted to an intensive care unit, and 11% died during admission. Patients lacking SIRI scores were more likely to be younger (median 60 vs. 72 years, p < 0.0001), be non-White (29% vs. 13%, p < 0.0001), and have Medicaid (22% vs. 9%, p < 0.0001). Patients with elevated versus no SIRI scores were more likely to have GOC documentation in the unmatched (aOR 2.5, p < 0.0001) and propensity-matched cohorts (aOR 2.1, p < 0.0001). CONCLUSIONS: Using AI predictions of mortality to target GOC documentation may create differences in documentation prevalence between patients with and without AI mortality prediction scores with similar severity of illness. These finding suggest using AI to target GOC documentation may have the unintended consequence of disadvantaging severely ill patients lacking AI-generated scores from receiving targeted GOC documentation, including patients who are more likely to be non-White and have Medicaid insurance.

Hope and illness expectations: A cross-sectional study in patients with advanced cancer.

BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.

The feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game for women with advanced breast or gynecologic cancer.

BACKGROUND: Cancer clinicians and systems aim to provide patient-centered care, but not all patients have the self-advocacy skills necessary to ensure their care reflects their needs and priorities. This study examines the feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer. METHODS: Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet-based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale) using intention-to-treat analysis. RESULTS: Seventy-eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach-to-consent rate; 93% enroll-to-randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention's (75%) and trial's (87%) acceptability. Participants in the intervention group experienced significant improvements in self-advocacy at 3 and 6 months compared to participants in the control group. CONCLUSIONS: Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes.

Disparities in Unilateral Do Not Resuscitate Order Use During the COVID-19 Pandemic.

OBJECTIVES: A unilateral do-not-resuscitate (UDNR) order is a do-not-resuscitate order placed using clinician judgment which does not require consent from a patient or surrogate. This study assessed how UDNR orders were used during the COVID-19 pandemic. DESIGN: We analyzed a retrospective cross-sectional study of UDNR use at two academic medical centers between April 2020 and April 2021. SETTING: Two academic medical centers in the Chicago metropolitan area. PATIENTS: Patients admitted to an ICU between April 2020 and April 2021 who received vasopressor or inotropic medications to select for patients with high severity of illness. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The 1,473 patients meeting inclusion criteria were 53% male, median age 64 (interquartile range, 54-73), and 38% died during admission or were discharged to hospice. Clinicians placed do not resuscitate orders for 41% of patients ( n = 604/1,473) and UDNR orders for 3% of patients ( n = 51/1,473). The absolute rate of UDNR orders was higher for patients who were primary Spanish speaking (10% Spanish vs 3% English; p ≤ 0.0001), were Hispanic or Latinx (7% Hispanic/Latinx vs 3% Black vs 2% White; p = 0.003), positive for COVID-19 (9% vs 3%; p ≤ 0.0001), or were intubated (5% vs 1%; p = 0.001). In the base multivariable logistic regression model including age, race/ethnicity, primary language spoken, and hospital location, Black race (adjusted odds ratio [aOR], 2.5; 95% CI, 1.3-4.9) and primary Spanish language (aOR, 4.4; 95% CI, 2.1-9.4) had higher odds of UDNR. After adjusting the base model for severity of illness, primary Spanish language remained associated with higher odds of UDNR order (aOR, 2.8; 95% CI, 1.7-4.7). CONCLUSIONS: In this multihospital study, UDNR orders were used more often for primary Spanish-speaking patients during the COVID-19 pandemic, which may be related to communication barriers Spanish-speaking patients and families experience. Further study is needed to assess UDNR use across hospitals and enact interventions to improve potential disparities.

Primary Palliative Care Improves Uptake of Advance Care Planning Among Patients With Advanced Cancers.

BACKGROUND: Palliative care specialists are experts in conducting advance care planning (ACP) but are a limited resource. Oncology nurses often have special relationships with their patients and thus may be poised to provide primary palliative care. We sought to determine the impact of a nurse-led primary palliative care intervention on ACP uptake among patients with advanced cancer. METHODS: We performed a secondary analysis of a cluster randomized controlled trial examining the impact of nurse-based primary palliative care. In the parent trial, patients with advanced cancer received either monthly primary palliative care visits with trained nurses within their cancer center or standard care. Nurses in the intervention arm received special training in ACP. ACP uptake was assessed at enrollment and 3 months later evaluating (1) whether an end-of-life conversation (EOLC) occurred with one's oncologist, and (2) completion of an advance directive (AD). Multivariable logistic regression tested differences in ACP uptake by treatment arm adjusted for age, religious importance, education, time with current oncologist, and performance status. RESULTS: Of 672 patients enrolled, 182/336 (54%) patients in the intervention arm and 196/336 (58%) in the standard care arm lacked an EOLC at baseline and completed the 3-month assessment. Of those, 82/182 (45.1%) patients in the intervention arm and 29/196 (14.8%) in the standard care arm reported having an EOLC at 3 months (adjusted odds ratio, 5.28; 95% CI, 3.10-8.97; P<.001). Similarly, 111/336 (33%) patients in the intervention arm and 105/336 (31%) in the standard care arm lacked an AD at baseline and completed the 3-month assessment. Of those, 48/111 (43.2%) patients in the intervention arm and 19/105 (18.1%) in the standard care arm completed an AD over the study period (adjusted odds ratio, 3.68; 95% CI, 1.89-7.16; P<.001). CONCLUSIONS: Nurse-led primary palliative care increased ACP uptake among patients with advanced cancer. Training oncology nurses embedded within community cancer centers to provide primary palliative care may help improve ACP access.

"I was never one of those people who just jumped right in for me": patient perspectives on self-advocacy training for women with advanced cancer.

PURPOSE: Patients with advanced cancer experience many complicated situations that can make self-advocacy (defined as the ability speak up for yourself in the face of a challenge) difficult. Few self-advocacy interventions exist, and most are atheoretical with minimal patient engagement. The purpose of this study is to describe participant perspectives of a novel, self-advocacy serious game intervention called Strong Together. METHODS: This was a qualitative cross-sectional descriptive study among women receiving cancer care at an academic cancer center within 3 months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one semi-structured interviews 3-months post Strong Together and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze transcripts and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants' experiences engaging with the Strong Together intervention. RESULTS: Participants (N = 40) reported that the Strong Together intervention was acceptable, noting that it was realistic and reflective of their personal experiences. Overarching themes included seeing myself in most scenarios and wanting more content; giving me the go ahead to expect more; offering ideas for how to stand up for myself; reinforcing what I am already doing; and reminding me of what I have. Participants suggested adding additional content including diverse characters. CONCLUSION: This study demonstrated that women with advanced cancer were receptive to a self-advocacy skills-building intervention. Future research should explore the mechanisms linking serious games to learning and health outcomes.

Self-advocacy Behaviors and Needs in Women with Advanced Cancer: Assessment and Differences by Patient Characteristics.

BACKGROUND: Self-advocacy skills allow individuals with cancer to overcome challenges related to their health, care, and well-being. Understanding the self-advocacy behaviors and needs of individuals with cancer is critical to addressing the lack of evidence-based self-advocacy interventions. The aims of this study are to describe (1) self-advocacy behaviors and needs of women with advanced cancer and (2) associations between self-advocacy and sociodemographic, cancer, and patient-reported outcomes. METHODS: We analyzed cross-sectional data from a clinical trial among women within 3 months of a metastatic breast or stage III or IV gynecologic cancer diagnosis. Descriptive and correlational statistics and tests of group difference were calculated for measures of self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale), sociodemographic characteristics, quality of life (FACT-G), symptom burden (M.D. Anderson Symptom Inventory), and mood (Hospital Anxiety and Depression Scale). RESULTS: Participants (N = 78) reported self-advocacy behaviors including making decisions based on their priorities, asking questions to their healthcare providers, and comparing their experiences to others' experiences. Self-advocacy needs focused on finding health information and talking with healthcare providers. Self-advocacy behaviors and needs did not differ by participants' sociodemographic characteristics or mood. Higher self-advocacy behaviors were associated with higher quality of life (p ≤ .01) and lower symptom severity (p < .05) with a trend for cancer recurrence (p = .05). CONCLUSIONS: Women with advanced cancer report engaging in self-advocacy behaviors and these are associated with higher quality of life and lower symptom burden. Future research should determine if self-advocacy behaviors and needs change over time and how patient characteristics impact self-advocacy behaviors and needs.

Hope and advance care planning in advanced cancer: Is there a relationship?

BACKGROUND: Clinicians often cite a fear of giving up hope as a reason they defer advance care planning (ACP) among patients with advanced cancer. The objective of this study was to determine whether engagement in ACP affects hope in these patients. METHODS: This was a secondary analysis of a randomized controlled trial of primary palliative care in advanced cancer. Patients who had not completed ACP at baseline were included in the analysis. ACP was assessed in the forms of an end-of-life (EOL) conversation with one's oncologist and completion of a living will or advance directive (AD). Measurements were obtained at baseline and at 3 months. Hope was measured using the Herth Hope Index (HHI) (range, 12-48; higher scores indicate higher hope). Multivariate regression was performed to assess associations between ACP and hope, controlling for baseline HHI score, study randomization, patient age, religious importance, education, marital status, socioeconomic status, time since cancer diagnosis, pain/symptom burden (Edmonton Symptom Assessment System), and anxiety/depression score (Hospital Anxiety and Depression Scale)-all variables known to be associated with ACP and/or hope. RESULTS: In total, 672 patients with advanced cancer were enrolled in the overall study. The mean age was 69 ± 10 years, and the most common cancer types were lung cancer (36%), gastrointestinal cancer (20%) and breast/gynecologic cancers (16%). In this group, 378 patients (56%) had not had an EOL conversation at baseline, of whom 111 of 378 (29%) reported having an EOL conversation by 3 months. Hope was not different between patients who did or did not have an EOL conversation over the study period (mean ± standard deviation ∆HHI, 0.20 ± 5.32 vs -0.53 ± 3.80, respectively; P = .136). After multivariable adjustment, hope was significantly increased in patients who had engaged in an EOL conversation (adjusted mean difference in ∆HHI, 0.95; 95% CI, 0.08-1.82; P = .032). Similarly, of 216 patients (32%) without an AD at baseline, 67 (31%) had subsequently completed an AD. Unadjusted hope was not different between those who did and did not complete an AD (∆HHI, 0.20 ± 3.89 vs -0.91 ± 4.50, respectively; P = .085). After adjustment, hope was significantly higher in those who completed an AD (adjusted mean difference in ∆HHI, 1.31; 95% CI, 0.13-2.49; P = .030). CONCLUSIONS: The current results demonstrate that hope is not decreased after engagement in ACP and indeed may be increased. These findings may provide reassurance to clinicians who are apprehensive about having these important and difficult conversations. LAY SUMMARY: Many oncologists defer advance care planning (ACP) out of concern for giving up hope. This study demonstrates that hope is not decreased in patients who have engaged in ACP either as a conversation with their oncologists or by completing an advance directive. With this information, providers may feel more comfortable having these important conversations with their patients.

Patterns and Trends in Receipt of Opioids Among Patients Receiving Treatment for Cancer in a Large Health System.

BACKGROUND: Given limited evidence on opioid prescribing among patients receiving treatment for cancer during the ongoing opioid epidemic, our objective was to assess predictors of and trends in opioid receipt during cancer treatment, including how patterns differ by type of cancer. METHODS: Using cancer registry data, we identified patients with a first lifetime primary diagnosis of breast, colorectal, or lung cancer from 2013 to 2017 who underwent treatment within a large cancer center network. Cancer registry data were linked to electronic health record information on opioid prescriptions. We examined predictors of and trends in receipt of any opioid prescription within 12 months of cancer diagnosis. RESULTS: The percentage of patients receiving opioids varied by cancer type: breast cancer, 35% (1,996/5,649); colorectal, 37% (776/2,083); lung, 47% (1,259/2,654). In multivariable analysis, opioid use in the year before cancer diagnosis was the factor most strongly associated with receipt of opioids after cancer diagnosis, with 4.90 (95% CI, 4.10-5.86), 5.09 (95% CI, 3.88-6.69), and 3.31 (95% CI, 2.68-4.10) higher odds for breast, colorectal, and lung cancers, respectively. We did not observe a consistent decline in opioid prescribing over time, and trends differed by cancer type. CONCLUSIONS: Our findings suggest that prescription of opioids to patients with cancer varies by cancer type and other factors. In particular, patients are more likely to receive opioids after cancer diagnosis if they were previously exposed before diagnosis, suggesting that pain among patients with cancer may commonly include non-cancer-related pain. Heterogeneity and complexity among patients with cancer must be accounted for in developing policies and guidelines aimed at addressing pain management while minimizing the risk of opioid misuse.

Exemptions to state laws regulating opioid prescribing for patients with cancer-related pain: A summary.

BACKGROUND: Cancer-related pain is highly prevalent and is commonly treated with prescription opioids. The Centers for Disease Control and Prevention (CDC) now encourages conservative opioid prescribing in recognition of potential opioid-related risks. However, CDC guidelines have been misapplied to patients with cancer. Recent laws at the state level reflect the CDC's guidance by limiting opioid prescribing. It is unclear whether states exempt cancer-related pain, which may affect cancer pain management. Thus, the objective of this study was to summarize current state-level opioid prescribing laws and exemptions for patients with cancer. METHODS: Two study authors reviewed publicly available state records to identify the most recent opioid prescribing laws and cancer-related exemptions. Documents were required to have the force of law and be enacted at the time of the search (November 2020). RESULTS: Results indicated that 36 states had enacted formal legislation limiting the duration and/or dosage of opioid prescriptions, and this was largely focused on acute pain and/or initial prescriptions. Of these states, 32 (89%) explicitly exempted patients with cancer-related pain from opioid prescribing laws. Exemptions were broadly applied, with few states providing specific guidance for cancer-related pain prescribing. CONCLUSIONS: The results of this study indicate that most states recognize the importance of prescription opioids in cancer-related pain management. However, drafting nuanced and clinically relevant opioid legislation is challenging for a heterogenous population. Additionally, current attempts to regulate opioid prescribing by state law may unintentionally undermine patient-centered approaches to pain management. Additional resources are needed to facilitate clarity at the intersection of opioid-related legislation and clinical management for cancer-related pain. LAY SUMMARY: In this review of state-level legislation, current limitations on opioid prescribing are summarized and detailed information is provided on exemptions for patients with cancer. The majority of states have enacted specific dosage and/or duration limitations on opioid prescribing while including broad exemptions for cancer-related pain. Cancer-related pain exemptions are important to include, as is consistent with national and professional guidelines (eg, the Centers for Disease Control and Prevention). However, these exemptions may also unintentionally undermine patient-centered approaches to pain management. Additional resources, including specific guidance for patients with cancer, are needed to facilitate clarity at the intersection of opioid-related legislation and clinical pain management. ​.

Stronger therapeutic alliance is associated with better quality of life among patients with advanced cancer.

OBJECTIVE: Patient-oncologist therapeutic alliance is a foundation of quality cancer care, although there is limited research demonstrating its relationship with patient outcomes. We investigated the relationship between therapeutic alliance and patient quality of life with a secondary goal of determining whether the association varied by patients' baseline level of psychological distress. METHODS: Cross-sectional analysis of baseline data from a randomized clinical trial of 672 patients with advanced cancer participating in a primary palliative care intervention trial. Patients completed baseline self-reported measures of therapeutic alliance (The Human Connection Scale, range: 16-64), overall quality of life (Functional Assessment of Cancer Therapy-Palliative Care, range: 0-184), and psychological distress (Hospital Anxiety and Depression Scale, range: 0-42). First, we determined the relationship between therapeutic alliance and quality of life using multivariable regression adjusting for confounders. We then examined if psychological distress was an effect modifier in this relationship by adding interaction effects of depression and anxiety symptoms on therapeutic alliance into the regression model. RESULTS: Patients reported high levels of therapeutic alliance (56.4 ± 7.4) and moderate quality of life (130.3 ± 25.5). Stronger therapeutic alliance was associated with better quality of life after adjusting for other confounding factors (ß = 3.7, 95% confidence interval = 2.1, 5.3, p < 0.01). The relationship between therapeutic alliance and quality of life was generally consistent regardless of psychological distress. CONCLUSIONS: Collaborative, trusting relationships between patients with advanced cancer and their oncologists are associated with better patient quality of life. Future research should investigate the causal, longitudinal nature of these relationships.

"Give them the door but don't push them through it": Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine.

Little is known about pediatric caregivers' perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families' spiritual backgrounds and needs in ways that respectfully open the door to these conversations.

Deprescribing in Advanced Illness: Aligning Patient, Clinician, and Health Plan Goals.

Polypharmacy has been linked to adverse outcomes including increased risk of hospitalization, falls, and death and contributes to unnecessary healthcare spending. Deprescribing efforts aim to reduce medication burden while improving or maintaining patients' quality of life. While the practice of deprescribing is gaining momentum, quality measurement and provider reimbursement are barriers that must be addressed for deprescribing to achieve widespread adoption. Because many quality measures are focused on medication use and adherence, deprescribing efforts may negatively impact primary care provider and health plan quality ratings and value-based reimbursement. In addressing this conflict, there are opportunities to proactively align the priorities and incentives of patients, providers, and plans to promote deprescribing. In this report, we propose several actionable steps to address quality and reimbursement-based barriers such as facilitating the exclusion of those engaged in deprescribing efforts from quality measures and the development of deprescribing-based quality measures.

Associations Between Polypharmacy, Symptom Burden, and Quality of Life in Patients with Advanced, Life-Limiting Illness.

BACKGROUND: Polypharmacy may be particularly burdensome near the end of life, as patients "accumulate" medications to treat and prevent multiple diseases. OBJECTIVE: To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month-1 year). DESIGN: Secondary analysis of baseline data from a trial of statin discontinuation. PARTICIPANTS: Adults with advanced, life-limiting illness. MAIN MEASURES: Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0-90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0-10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL. KEY RESULTS: Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took ≥ 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p < .001) and lower QOL (coefficient - .06; p = .001). Adjusting for symptom burden weakened the association between polypharmacy and QOL (coefficient - .03; p = .045) without a significant interaction, suggesting that worse quality of life associated with polypharmacy may be related to medication-associated symptoms. CONCLUSIONS: Among adults with advanced illness, taking more medications is associated with higher symptom burden and lower QOL. Attention to medication-related symptoms and shared decision-making regarding deprescribing are warranted in this setting. NIH TRIAL REGISTRY NUMBER: ClinicalTrials.gov Identifier for Parent Study - NCT01415934.

Nurses' perspectives on the personal and professional impact of providing nurse-led primary palliative care in outpatient oncology settings.

BACKGROUND:: Palliative care (PC) workforce shortages have led to a need for primary PC provided by non-specialists. The Care Management by Oncology Nurses (CONNECT) intervention provides infusion room oncology nurses with training and support to provide primary PC. AIMS:: To describe nurses' perspectives on the personal and professional impact of training and provision of primary PC as part of CONNECT. METHODS:: This qualitative study consisted of in-depth telephone interviews with 11 nurses at oncology practices in Pennsylvania. Data was analysed using qualitative content analysis. FINDINGS:: Nurses reported a sense of personal and professional fulfillment from providing primary PC, while noting the risk of increased emotional attachment to patients. Participation improved nursing communication skills. A supportive workplace helped to minimise stress related to incorporating primary PC into busy treatment schedules. CONCLUSION:: Providing primary PC challenges the task-oriented paradigm of nursing practice and will potentially alter the professional roles and workloads of infusion room nurses.

Marketing the Research Missions of Academic Medical Centers: Why Messages Blurring Lines Between Clinical Care and Research Are Bad for both Business and Ethics.

Academic Medical Centers (AMCs) offer patient care and perform research. Increasingly, AMCs advertise to the public in order to garner income that can support these dual missions. In what follows, we raise concerns about the ways that advertising blurs important distinctions between them. Such blurring is detrimental to AMC efforts to fulfill critically important ethical responsibilities pertaining both to science communication and clinical research, because marketing campaigns can employ hype that weakens research integrity and contributes to therapeutic misconception and misestimation, undermining the informed consent process that is essential to the ethical conduct of research. We offer ethical analysis of common advertising practices that justify these concerns. We also suggest the need for a deliberative body convened by the Association of American Medical Colleges and others to develop a set of voluntary guidelines that AMCs can use to avoid in the future, the problems found in many current AMC advertising practices.

Palliative care content on cancer center websites.

PURPOSE: Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. METHODS: We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. RESULTS: NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. CONCLUSIONS: Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

Storytelling in the Early Bereavement Period to Reduce Emotional Distress Among Surrogates Involved in a Decision to Limit Life Support in the ICU: A Pilot Feasibility Trial.

OBJECTIVES: Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU. DESIGN: Pilot single-blind trial. SETTING: Five ICUs across three hospitals within a single health system between June 2013 and November 2014. SUBJECTS: Bereaved surrogates of ICU patients. INTERVENTIONS: Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate's story. MEASUREMENTS AND MAIN RESULTS: The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates' mean age was 55.5 (SD, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling "better" or "much better," and none felt "much worse." One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral. CONCLUSION: A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.

Gynecologic Oncologist Views Influencing Referral to Outpatient Specialty Palliative Care.

OBJECTIVE: Early specialty palliative care is underused for patients with advanced gynecologic malignancies. We sought to understand how gynecologic oncologists' views influence outpatient specialty palliative care referral to help inform strategies for improvement. METHODS/MATERIALS: We conducted a qualitative interview study at 6 National Cancer Institute-designated cancer centers with well-established outpatient palliative care services. Between September 2015 and March 2016, 34 gynecologic oncologists participated in semistructured telephone interviews focused on attitudes, experiences, and preferences related to outpatient specialty palliative care. A multidisciplinary team analyzed transcripts using constant comparative methods to inductively develop a coding framework. Through an iterative, analytic process, codes were classified, grouped, and refined into themes. RESULTS: Mean (SD) participant age was 47 (10) years. Mean (SD) interview length was 25 (7) minutes. Three main themes emerged regarding how gynecologic oncologists view outpatient specialty palliative care: (1) long-term relationships with patients is a unique and defining aspect of gynecologic oncology that influences referral, (2) gynecologic oncologists value palliative care clinicians' communication skills and third-party perspective to increase prognostic awareness and help negotiate differences between patient preferences and physician recommendation, and (3) gynecologic oncologists prefer specialty palliative care services embedded within gynecologic oncology clinics. CONCLUSIONS: Gynecologic oncologists value longitudinal relationships with patients and use specialty palliative care to negotiate conflict surrounding prognostic awareness or the treatment plan. Embedding specialty palliative care within gynecologic oncology clinics may promote communication between clinicians and facilitate gynecologic oncologist involvement throughout the illness course.