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Background: Serious illness conversations may lead to care consistent with patients’ goals near the end of life. The emergency department could serve as an important time and location for these conversations. Aim: To determine the feasibility of an emergency department-based, brief motivational interview to stimulate serious illness conversations among seriously ill older adults by trained nurses. Design: A pre-/post-intervention study Settings/participants: In an urban, tertiary care, academic medical center and a community hospital from January 2021 to January 2022, we prospectively enrolled adults ⩾50 years of age with serious illness and an expected prognosis Results: Among 116 eligible patients who were willing and able to participate, 76 enrolled (65% recruitment rate), and 68 completed the follow-up (91% retention rate). Mean patient age was 64.4 years (SD 8.4), 49% were female, and 58% had metastatic cancer. In all, 16 nurses conducted the intervention, and all participants completed the intervention with a median duration of 27 min. Self-reported Advance Care Planning Engagement increased from 2.78 pre to 3.31 post intervention (readiness to “talk to doctors about end-of-life wishes,” p Conclusion: A novel, emergency department-based, nurse-led brief motivational interview to stimulate serious illness conversations is feasible and may improve advance care planning engagement and documentation in seriously ill older adults.

BACKGROUND For adolescents and young adults (AYAs), the diagnosis of cancer can impede social development, especially with respect to education, employment, and financial independence. However, there are limited quantitative data on the extent and trajectory of life disruptions during cancer treatment for AYA patients. METHODS This was a longitudinal, prospective, questionnaire-based cohort study of 145 AYA patients with cancer aged 15 to 29 years who were treated at a large academic cancer center. Questionnaires were administered shortly after diagnosis and 4 and 12 months after diagnosis. RESULTS Although half of the participants lived with their parents 6 months before diagnosis, 61% lived with their parents after diagnosis (P = .0002 vs 6 months before diagnosis), with a similar proportion reported to be living with their parents 4 months after diagnosis (61%; P = .001) and 55% doing so 12 months after diagnosis (P = .07). Before diagnosis, 38% of the patients were not attending school. After diagnosis, that proportion rose to 61% (P

Background/objective Oncology guidelines recommend earlier communication with patients about prognosis and goals‐of‐care in serious illness. However, current evidence leaves gaps in our understanding of the experience of these conversations. This analysis evaluates the patient and clinician experience of a conversation using a Serious Illness Conversation Guide (SICG). Design/setting Secondary analysis from a cluster‐randomized clinical trial in a northeastern cancer center. Participants Physicians, advanced practice clinicians, and patients with advanced cancer who received the intervention. Intervention SICG, clinician training, systems‐changes. Main outcomes and measures The patient questionnaire assessed perceptions of the conversation and impact on anxiety, hopefulness, peacefulness, sense of control over medical decisions, closeness with their clinician, and behaviors. The clinician questionnaire assessed feasibility, acceptability, and impact on satisfaction in their role. Results We enrolled 54 clinicians and 163 patients; 41 clinicians and 118 patients had a SICG discussion. Most patients described the conversation as worthwhile (79%) and reported no change or improvement in their sense of peacefulness, hopefulness, and anxiety (on average 79%); 56% reported feeling closer with their clinician. Qualitative patient data described positive behavior changes, including enhanced planning for future care and increased focus on personal priorities. Nearly 90% of clinicians agreed that the SICG facilitated timely, effective conversations, and 70% reported increased satisfaction in their role. Conclusion Conversations using a SICG were feasible, acceptable, and were associated with positive experiences for both patients and clinicians in oncology in ways that align with national recommendations for serious illness communication. This trial is registered at ClinicalTrials.gov: NCT01786811 https://clinicaltrials.gov/ct2/show/NCT01786811., This descriptive analysis reports the patient and clinician experience of a structured conversation about patients' values, goals, prognosis, and care preferences in the outpatient setting in oncology. Conversations using the Serious Illness Conversation Guide were feasible, acceptable, and were associated with positive experiences for both patients with advanced cancer and oncology clinicians in ways that align with national recommendations for serious illness communication.

BACKGROUND Adolescent and young adult (AYA) cancer survivors have high risks of late effects. Little is known about the late-effect information needs of AYAs early in treatment or their role in treatment decision making. This study evaluated the importance, quality, and implications of information about late effects in AYAs recently diagnosed with cancer. METHODS This study surveyed 201 AYAs with cancer who were 15 to 29 years old and were treated at the Dana-Farber Cancer Institute (Boston, Massachusetts). Patients were approached within 6 weeks of their diagnosis and were asked about their late-effect and infertility information needs, treatment decision making, and communication outcomes. RESULTS Forty-five percent of the participants were female; 88% were white. Most AYAs (87% [173 of 200]) considered information about the risks of late effects to be extremely or very important; 80% (159 of 200) valued information about infertility. Many were distressed by information about late effects (53% [105 of 200]) and infertility (45% [89 of 200]); those who considered late-effect information distressing were more likely to value this information (P

BACKGROUND Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time. METHODS The current study was a longitudinal, prospective, questionnaire-based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis. RESULTS The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high-quality communication (odds ratio, 2.67; 95% CI, 1.38-5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24-4.61) after adjustment for patient age category, race/ethnicity, and time point of administration. CONCLUSIONS The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.

During the last 6 months of life, 75% of older adults with preexisting serious illness, such as advanced heart failure, lung disease, and cancer, visit the emergency department (ED). ED visits often mark an inflection point in these patients' illness trajectories, signaling a more rapid rate of decline. Although most patients are there seeking care for acute issues, many of them have priorities other than to simply live as long as possible; yet without discussion of preferences for treatment, they are at risk of receiving care not aligned with their goals. An ED visit may offer a unique "teachable moment" to empower patients to consider their ability to influence future medical care decisions. However, the constraints of the ED setting pose specific challenges, and little research exists to guide clinicians treating patients in this setting. We describe the current state of goals-of-care conversations in the ED, outline the challenges to conducting these conversations, and recommend a research agenda to better equip emergency physicians to guide shared decisionmaking for end-of-life care. Applying best practices for serious illness communication may help emergency physicians empower such patients to align their future medical care with their values and goals.

Background When doctors have honest conversations with patients about their illness and involve them in decisions about their care, patients express greater satisfaction with care and lowered anxiety and depression. The Serious Illness Care Programme (the Programme), originally developed in the United States (U.S), promotes meaningful, realistic and focused conversations about patient’s wishes, fears and worries for the future with their illness. The Serious Illness Conversation Guide (the guide) provides a framework to structure these conversations. The aim of this paper is to present findings from a study to examine the ‘face validity’, acceptability and relevance of the Guide for use within the United Kingdom (UK) health care setting. Methods A multi-stage approach was undertaken, using three separate techniques:1.Nominal Group Technique with clinician ‘expert groups’ to review the Serious Illness Conversation Guide: 14 ‘experts’ in Oncology, Palliative Care and Communication Skills;2.Cognitive Interviews with 6 patient and public representatives, using the ‘think aloud technique’; to explore the cognitive processes involved in answering the questions in the guide, including appropriateness of language, question wording and format3.Final stakeholder review and consensus. Results Nominal Group Technique Unanimous agreement the conversation guide could provide a useful support to clinicians. Amendments are required but should be informed directly from the cognitive interviews. Training highlighted as key to underpin the use of the guide. Cognitive interviews The ‘holistic’ attention to the person as a whole was valued rather than a narrow focus on their disease. Some concern was raised regarding the ‘formality’ of some wording however and suggestions for amendments were made. Final stakeholder review Stakeholders agreed amendments to 5/13 prompts and unanimously agreed the UK guide should be implemented as a part of the pilot implementation of the Serious Illness Care Programme UK. Conclusion Use of the guide has the potential to benefit patients, facilitating a ‘person-centred’ approach to these important conversations, and providing a framework to promote shared decision making and care planning. Further research is ongoing, to understand the impact of these conversations on patients, families and clinicians and on concordance of care delivery with expressed patient wishes.

Background: Most seriously ill older adults visit the emergency department (ED) near the end of life, yet no feasible method exists to empower them to formulate their care goals in this setting. Objective: To develop an intervention to empower seriously ill older adults to formulate their future care goals in the ED. Design: Prospective intervention development study. Setting: In a single, urban, academic ED, we refined the prototype intervention with ED clinicians and patient advisors. We tested the intervention for its acceptability in English-speaking patients ≥65 years old with serious illness or patients whose treating ED clinician answered “No” to the “surprise question” (“would not be surprised if died in the next 12 months”). We excluded patients with advance directives or whose treating ED clinician determined the patient to be inappropriate. Measurements: Our primary outcome was perceived acceptability of our intervention. Secondary outcomes included perceived main intent and stated attitude toward future care planning. Results: We refined the intervention with 16 mock clinical encounters of ED clinicians and patient advisors. Then, we administered the refined intervention to 23 patients and conducted semistructured interviews afterward. Mean age of patients was 76 years, 65% were women, and 43% of patients had metastatic cancer. Most participants (n = 17) positively assessed our intervention, identified questions for their doctors, and reflected on how they feel about their future care. Conclusion: An intervention to empower seriously ill older adults to understand the importance of future care planning in the ED was developed, and they found it acceptable.

Background: Serious illness conversations are part of advance care planning (ACP) and focus on prognosis, values, and goals in patients who are seriously ill. To be maximally effective, such conversations must be documented accurately and be easily accessible. Objectives: The two coprimary objectives of the study were to assess concordance between written documentation and recorded audiotaped conversations, and to evaluate adherence to the Serious Illness Conversation Guide questions. Methods: Data were obtained as part of a trial in patients with advanced cancer. Clinicians were trained to use a guide to conduct and document serious illness conversations. Conversations were audiotaped. Two researchers independently compared audiorecordings with the corresponding documentation in an electronic health record (EHR) template and free-text progress notes, and rated the degree of concordance and adherence. Results: We reviewed a total of 25 audiorecordings. Clinicians addressed 87% of the conversation guide elements. Prognosis was discussed least frequently, only in 55% of the patients who wanted that information. Documentation was fully concordant with the conversation 43% of the time. Concordance was best when documenting family matters and goals, and least frequently concordant when documenting prognostic communication. Most conversations (64%) were documented in the template, a minority (28%) only in progress notes and two conversations (8%) were not documented. Concordance was better when the template was used (62% vs. 28%). Conclusion: Clinicians adhered well to the conversation guide. However, key information elicited was documented and fully concordant less than half the time. Greater concordance was observed when clinicians used a prespecified template. The combined use of a guide and EHR template holds promise for ACP conversations.

Global health care is experiencing an unprecedented surge in the number of critically ill patients who require mechanical ventilation due to the COVID-19 pandemic. The requirement for relatively long periods of ventilation in those who survive means that many are considered for tracheostomy to free patients from ventilatory support and maximise scarce resources. COVID-19 provides unique challenges for tracheostomy care: health-care workers need to safely undertake tracheostomy procedures and manage patients afterwards, minimising risks of nosocomial transmission and compromises in the quality of care. Conflicting recommendations exist about case selection, the timing and performance of tracheostomy, and the subsequent management of patients. In response, we convened an international working group of individuals with relevant expertise in tracheostomy. We did a literature and internet search for reports of research pertaining to tracheostomy during the COVID-19 pandemic, supplemented by sources comprising statements and guidance on tracheostomy care. By synthesising early experiences from countries that have managed a surge in patient numbers, emerging virological data, and international, multidisciplinary expert opinion, we aim to provide consensus guidelines and recommendations on the conduct and management of tracheostomy during the COVID-19 pandemic.

Background: Advance care planning (ACP) conversations are an important intervention to provide care consistent with patient goals near the end of life. The emergency department (ED) could serve as an important time and location for these conversations. Objectives: To determine the feasibility of an ED-based, brief negotiated interview (BNI) to stimulate ACP conversations among seriously ill older adults. Methods: We conducted a pre/postintervention study in the ED of an urban, tertiary care, academic medical center. From November 2017 to May 2019, we prospectively enrolled adults ≥65 years of age with serious illness. Trained clinicians conducted the intervention. We measured patients' ACP engagement at baseline and follow-up (3 ± 1 weeks) and reviewed electronic medical record documentation of ACP (e.g., medical order for life-sustaining treatment [MOLST]). Results: We enrolled 51 patients (mean age = 71; SD 12), 41% were female, and 51% of patients had metastatic cancer. Median duration of the intervention was 11.8 minutes; few (6%) of the interventions were interrupted. We completed follow-up for 61% of participants. Patients' self-reported ACP engagement increased from 3.0 to 3.7 out of 5 after the intervention (p

CONTEXT: Many consider goal-concordant care (GCC) to be the most important of advance care planning and palliative care. Researchers face significant challenges in attempting to measure this outcome. We conducted a randomized controlled trial to assess the effects of a system-level intervention to improve serious illness communication on GCC and other outcomes.OBJECTIVES: To describe our measurement approach to GCC, present findings from a post-hoc analysis of trial data, and discuss lessons learned about measuring GCC.METHODS: Using trial data collected to measure GCC, we analyzed ratings and rankings from a nonvalidated survey of patient priorities in the setting of advanced cancer, the Life Priorities Scale, and compared outcomes with correlative measures.RESULTS: Participants commonly rated several predetermined and literature-derived priorities as important but did so in ways that were commonly incongruent with rankings. Ratings were frequently stable over time; rankings less so. Rankings are more likely to help assess the degree to which care is goal concordant but may be best augmented by corollary measures that signal achievement of a given priority.CONCLUSION: Measuring GCC remains a fundamental challenge to palliative care researchers. Ratings attest to the fact that many things matter to patients; however, rankings can better determine what matters most. Insights gained from our experience may guide future research aiming to use this outcome to assess the effect of intervention to improve serious illness care.

Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients. Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.

The accuracy of mortality assessment by emergency clinicians is unknown and may affect subsequent medical decision-making.To determine the association of the question, "Would you be surprised if your patient died in the next one month?" (known as the surprise question) asked of emergency clinicians with actual 1-month mortality among undifferentiated older adults who visited the emergency department (ED).This prospective cohort study at a single academic medical center in Portland, Maine, included consecutive patients 65 years or older who received care in the ED and were subsequently admitted to the hospital from January 1, 2014, to December 31, 2015. Data analyses were conducted from January 2018 to March 2019.Treating emergency clinicians were required to answer the surprise question, "Would you be surprised if your patient died in the next one month?" in the electronic medical record when placing a bed request for all patients who were being admitted to the hospital.The primary outcome was mortality at 1 month, assessed from the National Death Index. The secondary outcomes included accuracies of responses by both emergency clinicians and admitting internal medicine clinicians to the surprise question in identifying older patients with high 6-month and 12-month mortality.The full cohort included 10 737 older adults (mean [SD] age, 75.9 [8.8] years; 5532 [52%] women; 10 157 [94.6%] white) in 16 223 visits treated in the ED and admitted to the hospital. There were 5132 patients (31.6%) with a Charlson Comorbidity Index score of 2 or more. Mortality rates were 8.3% at 1 month, 17.2% at 6 months, and 22.5% at 12 months. Emergency clinicians stated that they would not be surprised if the patient died in the next month for 2104 patients (19.6%). In multivariable analysis controlling for age, sex, race, admission diagnosis, and comorbid conditions, the odds of death at 1 month were higher in patients for whom clinicians answered that they would not be surprised if the patient died in the next 1 month compared with patients for whom clinicians answered that they would be surprised if the patient died in the next 1 month (odds ratio, 2.4 [95% CI, 2.2-2.7]; P .001). However, the diagnostic test characteristics of the surprise question were poor (sensitivity, 20%; specificity, 93%; positive predictive value, 43%; negative predictive value, 82%; accuracy, 78%; area under the receiver operating curve of the multivariable model, 0.73 [95% CI, 0.72-0.74; P .001]).This study found that asking the surprise question of emergency clinicians may be a valuable tool to identify older patients in the ED with a high risk of 1-month mortality. The effect of implementing the surprise question to improve population-level health care for older adults in the ED who are seriously ill remains to be seen.

IMPORTANCE: High-quality conversations between clinicians and seriously ill patients about values and goals are associated with improved outcomes but occur infrequently.OBJECTIVE: To examine feasibility, acceptability, and effect of a communication quality-improvement intervention (Serious Illness Care Program) on patient outcomes.DESIGN, SETTING, AND PARTICIPANTS: A cluster randomized clinical trial of the Serious Illness Care Program in an outpatient oncology setting was conducted. Patients with advanced cancer (n = 278) and oncology clinicians (n = 91) participated between September 1, 2012, and June 30, 2016. Data analysis was performed from September 1, 2016, to December 27, 2018. All analyses were conducted based on intention to treat.INTERVENTIONS: Tools, training, and system changes.MAIN OUTCOMES AND MEASURES: The coprimary outcomes included goal-concordant care (Life Priorities) and peacefulness (Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire) at the end of life. Secondary outcomes included therapeutic alliance (Human Connection Scale), anxiety (Generalized Anxiety Disorder 7 scale), depression (Patient Health Questionnaire 9), and survival. Uptake and effectiveness of clinician training, clinician use of the conversation tool, and conversation duration were evaluated.RESULTS: Data from 91 clinicians in 41 clusters (72.9% participation; intervention, n = 48; control, n = 43; 52 [57.1%] women) and 278 patients (45.8% participation; intervention, n = 134; control, n = 144; 148 [53.2%] women) were analyzed. Forty-seven clinicians (97.9%) rated the training as effective (mean [SD] score, 4.3 [0.7] of 5.0 possible); of 39 who received a reminder, 34 (87.2%) completed at least 1 conversation (median duration, 19 minutes; range, 5-70). Peacefulness, therapeutic alliance, anxiety, and depression did not differ at baseline. The coprimary outcomes were evaluated in 64 patients; no significant differences were found between the intervention and control groups. However, the trial demonstrated significant reductions in the proportion of patients with moderate to severe anxiety (10.2% vs 5.0%; P = .05) and depression symptoms (20.8% vs 10.6%; P = .04) in the intervention group at 14 weeks after baseline. Anxiety reduction was sustained at 24 weeks (10.4% vs 4.2%; P = .02), but depression reduction was not sustained (17.8% vs 12.5%; P = .31). Survival and therapeutic alliance did not differ between groups.CONCLUSIONS AND RELEVANCE: The results of this cluster randomized clinical trial were null with respect to the coprimary outcomes of goal-concordant care and peacefulness at the end of life. Methodologic challenges for the primary outcomes, including measure selection and sample size, limit the conclusions that can be drawn from the study. However, the significant reductions in anxiety and depression in the intervention group are clinically meaningful and require further study.TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01786811.

BACKGROUND: Adolescents and young adults (AYAs) with cancer generally want to engage in decision-making but are not always able to do so. We evaluated cancer treatment decision-making among AYAs, including decisional engagement and regret. METHODS: We surveyed 203 AYA patients with cancer aged 15 to 29 (response rate 74%) treated at a large academic center and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report decision-making preferences and experiences (Decisional Roles Scale) and the extent to which they regretted their initial treatment decision (Decisional Regret Scale) assessed at baseline and 4 and 12 months later. RESULTS: A majority of AYAs (58%) wanted to share responsibility for decision-making with oncologists; half (51%) preferred limited involvement from parents. Although most AYAs held roles they preferred, those who did not reported holding more passive roles relative to oncologists (P < .0001) and parents (P = .002) than they desired. Nearly one-quarter of patients (24%; 47 of 195) experienced regret about initial cancer treatment decisions at baseline, with similar rates at 4 (23%) and 12 (19%) months. In a multivariable model adjusted for age, decisional roles were not associated with regret; instead, regret was less likely among patients who trusted oncologists completely (odds ratio 0.17 [95% confidence interval 0.06–0.46]; P < .001) and who reported that oncologists understood what was important to them when treatment started (odds ratio 0.13 [95% confidence interval 0.04–0.42]; P < .001). CONCLUSIONS: Nearly one-fourth of AYA patients expressed regret about initial treatment decisions. Although some AYAs have unmet needs for decisional engagement, attributes of the patient-oncologist relationship, including trust and mutual understanding, may be most protective against regret.

Communication is central to pediatric oncology care. Pediatric oncologists disclose life-threatening diagnoses, explain complicated treatment options, and endeavor to give honest prognoses, to maintain hope, to describe treatment complications, and to support families in difficult circumstances ranging from loss of function and fertility to treatment-related or disease-related death. However, parents, patients, and providers report substantial communication deficits. Poor communication outcomes may stem, in part, from insufficient communication skills training, overreliance on role modeling, and failure to utilize best practices. This review summarizes evidence for existing methods to enhance communication skills and calls for revitalizing communication skills training within pediatric oncology.

CONTEXT: Emergency Department (ED) visits provide opportunities to empower patients to discuss advance care planning (ACP) with their outpatient clinicians, but systematically developed, feasible interventions do not currently exist. Brief negotiated interview (BNI) interventions, which allow ED clinicians to efficiently motivate patients, have potential to meet this need. OBJECTIVES: We developed a BNI ED intervention to empower older adults with life-limiting illness to formulate and communicate medical care goals to their primary outpatient clinicians. This study assessed the fidelity and feasibility of this intervention in a high-volume ED. METHODS: We enrolled adult patients with serious illnesses (advanced cancer, congestive heart failure, chronic obstructive pulmonary disease, chronic kidney disease on dialysis, predicted survival

BACKGROUND: Communication about priorities and goals improves the value of care for patients with serious illnesses. Resource constraints necessitate targeting interventions to patients who need them most. OBJECTIVE: To evaluate the effectiveness of a clinician screening tool to identify patients for a communication intervention. DESIGN: Prospective cohort study. SETTING: Primary care clinics in Boston, MA. PARTICIPANTS: Primary care physicians (PCPs) and nurse care coordinators (RNCCs) identified patients at high risk of dying by answering the Surprise Question (SQ): “Would you be surprised if this patient died in the next 2 years?” MEASUREMENTS: Performance of the SQ for predicting mortality, measured by the area under receiver operating curve (AUC), sensitivity, specificity, and likelihood ratios. RESULTS: Sensitivity of PCP response to the SQ at 2 years was 79.4% and specificity 68.6%; for RNCCs, sensitivity was 52.6% and specificity 80.6%. In univariate regression, the odds of 2-year mortality for patients identified as high risk by PCPs were 8.4 times higher than those predicted to be at low risk (95% CI 5.7–12.4, AUC 0.74) and 4.6 for RNCCs (3.4–6.2, AUC 0.67). In multivariate analysis, both PCP and RNCC prediction of high risk of death remained associated with the odds of 2-year mortality. LIMITATIONS: This study was conducted in the context of a high-risk care management program, including an initial screening process and training, both of which affect the generalizability of the results. CONCLUSION: When used in combination with a high-risk algorithm, the 2-year version of the SQ captured the majority of patients who died, demonstrating better than expected performance as a screening tool for a serious illness communication intervention in a heterogeneous primary care population.

The Serious Illness Care Programme is a complex intervention developed in the US to improve communication between clinicians and patients with serious illness. In collaboration with Aridane Labs the programme has been developed for use within the UK, with pilot implementation funded by NHS England. Within the programme, clinicians are trained in use of a Serious Illness Conversation Guide (the guide), to structure conversations with patients/families. A feasibility of the UK programme is underway, within one North West cancer centre. Aim To present interim results from the feasibility study Methods Data on the use and experience of the UK programme, from the perspective of clinicians and patients Quantitative Data: Questionnaires: Clinicians – pre/post training: confidence; attitudes to care of the dying; acceptability of serious illness care programme Patients – pre/post serious illness conversation: Quality of clinical communication; Quality of life; Anxiety; depression. Qualitative Data: In depth interviews: Clinicians: experience of the UK programme, education and training and engaging patients in serious illness conversations Patients: experience of engaging in serious illness conversations, including their acceptability of the approach Results Quantitative Data: Results will be presented to assess the feasibility and acceptability of the UK programme: Proportion of patients identified conversations and participation in study measures Illustrate any indicative improvements in communication and patient outcomes. Qualitative Data: Thematic Analysis to explore perceptions and experience of the programme: results will highlight main themes, such as: Conversation Value; Holistic and Compassionate; Opening up conversations with family members; Breaking the ice; Timing of conversation and Prognosis. Conclusion Results from this study suggest these conversations promote shared decision making and individualised care planning, and espouse 9holistic9 and 9person centred9 care. Further research and evaluation is required to understand the effect of the UK programme on patient outcomes.

Objective Our aim is to understand experiences with treatment decision-making among young adults with cancer. Methods We studied patients with lung cancer or colorectal cancer in the Cancer Care Outcomes Research and Surveillance Consortium, a prospective cohort study. We identified 148 young adult patients aged 21–40 years who completed baseline interview questions about cancer treatment decision-making; each was propensity score matched to three middle adult patients aged 41–60 years, for a cohort of 592 patients. Patients were asked about decision-making preferences, family involvement in decision-making, and worries about treatment. An ordinal logistic regression model evaluated factors associated with more treatment worries. Results Young and middle-aged adults reported similar decision-making preferences (p = 0.80) and roles relative to physicians (p = 0.36). Although family involvement was similar in the age groups (p = 0.21), young adults were more likely to have dependent children in the home (60% younger versus 28% middle-aged adults, p

By 2021, health care spending is projected to grow to 19.6% of the GDP, likely crowding out spending in other areas. The 2010 Affordable Care Act (ACA) attempts to curb health care spending by incentivizing high-value care through the creation of Accountable Care Organizations (ACOs), which assume financial risk for patient outcomes. With this financial risk, health systems creating ACOs will be motivated to pursue innovative care models that maximize the value of care. Palliative care, as an emerging field with a growing evidence base, is positioned to improve value in ACOs by increasing high-quality care and decreasing costs for the sickest patients. ACO leaders may find palliative care input valuable in optimizing high-quality patient-centered care in the accountable care environment; however, palliative care clinicians will need to adopt new models that extrapolate their direct patient care skills to population management strategies. We propose that palliative care specialists take on responsibilities for working with ACO leaders to broaden their mission for systemwide palliative care for appropriate patients by prospectively identifying patients with a high risk of death, high symptom burden, and/or significant psychosocial dysfunction, and developing targeted, “triggered” interventions to enhance patient-centered, goal-consistent, coordinated care. Developing these new population management competencies is a critical role for palliative care teams in the ACO environment.

Background: Identification of older adults with serious illness (life expectancy less than one year) who may benefit from serious illness conversations or other palliative care interventions in the emergency department (ED) is difficult. Objectives: To assess the performance of the “surprise question (SQ)” asked of emergency physicians to predict 12-month mortality. Design: We asked attending emergency physician “Would you be surprised whether this patient died in the next 12 months?” regarding patients ≥65 years old that they had cared for that shift. We prospectively obtained death records from Massachusetts Department of Health Vital Records. Setting: An urban, university-affiliated ED. Measurement: Twelve-month mortality. Results: We approached 38 physicians to answer the SQ, and 86% participated. The mean age of our cohort was 76 years, 51% were male, and 45% had at least one serious illness. Out of 207 patients, the physicians stated that they “would not be surprised” if the patient died in the next 12 months for 102 of the patients (49%); 44 of the 207 patients (21%) died within 12 months. The SQ demonstrated sensitivity of 77%, specificity of 56%, positive predictive value of 32%, and negative predictive value of 90%. When combined with other predictors, the model sorted the patient who lived from the patient who died correctly 72% of the time (c-statistic = 0.72). Conclusion: Use of the SQ by emergency physicians may predict 12-month mortality in older ED patients and may help emergency physicians identify older adults in need of palliative care interventions.

This trial assessed the feasibility, acceptability, tolerability, and efficacy of an Internet-based therapist-assisted cognitive-behavioral indicated prevention intervention for prolonged grief disorder (PGD) called Healthy Experiences After Loss (HEAL). Eighty-four bereaved individuals at risk for PGD were randomized to either an immediate treatment group (n = 41) or a waitlist control group (n = 43). Assessments were conducted at four time-points: prior to the wait-interval (for the waitlist group), pre-intervention, post-intervention, 6 weeks later, and 3 months later (for the immediate group only). Intent-to-treat analyses indicated that HEAL was associated with large reductions in prolonged grief (d = 1.10), depression (d = .71), anxiety (d = .51), and posttraumatic stress (d = .91). Also, significantly fewer participants in the immediate group met PGD criteria post-intervention than in the waitlist group. Pooled data from both groups also yielded significant reductions and large effect sizes in PGD symptom severity at each follow-up assessment. The intervention required minimal professional oversight and ratings of satisfaction with treatment and usability of the Internet interface were high. HEAL has the potential to be an effective, well-tolerated tool to reduce the burden of significant pre-clinical PGD. Further research is needed to refine HEAL and to assess its efficacy and mechanisms of action in a large-scale trial.

The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. These NCCN Guidelines Insights summarize the NCCN panel's discussions and guideline updates from 2013 and 2014. These include modifications/additions to palliative care screening and assessment protocols, new considerations for discussing the benefits and risks of anticancer therapy, and approaches to advance care planning. Recent updates focus on enhanced patient-centered care and seek to promote earlier integration of palliative care and advance care planning in oncology.

Younger, healthier patients contemplating high-risk (but potentially curative) hematopoietic cell transplants (HCT) may not consider advance care planning (ACP). We investigated the effect of pre transplant ACP in surviving HCT patients and bereaved caregivers using retrospective, audiotaped telephone surveys. Subjects were identified between 2001 and 2003 via databases at two high-volume HCT centers. Transcripts were coded by two investigators, with differences resolved by consensus. HCT survivors (n=18) were interviewed a median of 13 months after HCT for acute leukemia (7), lymphoma (5) or other (6); 50% had living wills, 72% had a formal proxy. Twelve (67%) had discussed mortality risk pre HCT with the medical team. Of those, 92% felt their hope and perception of the medical team's truthfulness was increased or unchanged (I/U) by the conversation, whereas all felt clinician commitment to transplant was I/U. Bereaved caregivers (n=11) were interviewed a median of 10 months post death (median 31 days post HCT, range 13-152). Nine (82%) had discussed mortality risk pre-HCT with the medical team; 7 (78%) felt hope was I/U, all felt clinician commitment to transplant and truthfulness was I/U, and most felt ACP reduced burden (67%). ACP discussions with patients and caregivers pre-HCT did not affect hope and supported confidence in medical teams.

Given the shortage of palliative care specialists in the United States, to ensure quality of care for patients with serious, life-threatening illness, generalist-level palliative care competencies need to be defined and taught. The purpose of this study was to define essential competencies for medical students and internal medicine and family medicine (IM/FM) residents through a national survey of palliative care experts.Proposed competencies were derived from existing hospice and palliative medicine fellowship competencies and revised to be developmentally appropriate for students and residents. In spring 2012, the authors administered a Web-based, national cross-sectional survey of palliative care educational experts to assess ratings and rankings of proposed competencies and competency domains.The authors identified 18 comprehensive palliative care competencies for medical students and IM/FM residents, respectively. Over 95% of survey respondents judged the competencies as comprehensive and developmentally appropriate (survey response rate = 72%, 71/98). Using predefined cutoff criteria, experts identified 7 medical student and 13 IM/FM resident competencies as essential. Communication and pain/symptom management were rated as the most critical domains.This national survey of palliative care experts defines comprehensive and essential palliative care competencies for medical students and IM/FM residents that are specific, measurable, and can be used to report educational outcomes; provide a sequence for palliative care curricula in undergraduate and graduate medical education; and highlight the importance of educating medical trainees in communication and pain management. Next steps include seeking input and endorsement from stakeholders in the broader medical education community.

Dialysis-dependent ESRD is a serious illness with high disease burden, morbidity, and mortality. Mortality in the first year on dialysis for individuals over age 75 years old approaches 40%, and even those with better prognoses face multiple hospitalizations and declining functional status. In the last month of life, patients on dialysis over age 65 years old experience higher rates of hospitalization, intensive care unit admission, procedures, and death in hospital than patients with cancer or heart failure, while using hospice services less. This high intensity of care is often inconsistent with the wishes of patients on dialysis but persists due to failure to explore or discuss patient goals, values, and preferences in the context of their serious illness. Fewer than 10% of patients on dialysis report having had a conversation about goals, values, and preferences with their nephrologist, although nearly 90% report wanting this conversation. Many nephrologists shy away from these conversations, because they do not wish to upset their patients, feel that there is too much uncertainty in their ability to predict prognosis, are insecure in their skills at broaching the topic, or have difficulty incorporating the conversations into their clinical workflow. In multiple studies, timely discussions about serious illness care goals, however, have been associated with enhanced goal-consistent care, improved quality of life, and positive family outcomes without an increase in patient distress or anxiety. In this special feature article, we will (1) identify the barriers to serious illness conversations in the dialysis population, (2) review best practices in and specific approaches to conducting serious illness conversations, and (3) offer solutions to overcome barriers as well as practical advice, including specific language and tools, to implement serious illness conversations in the dialysis population.

Earlier clinician-patient conversations about patients' values, goals, and preferences in serious illness (ie, serious illness conversations) are associated with better outcomes but occur inconsistently in cancer care.To evaluate the efficacy of a communication quality-improvement intervention in improving the occurrence, timing, quality, and accessibility of documented serious illness conversations between oncology clinicians and patients with advanced cancer.This cluster randomized clinical trial in outpatient oncology was conducted at the Dana-Farber Cancer Institute and included physicians, advanced-practice clinicians, and patients with cancer who were at high risk of death.The primary outcomes (goal-concordant care and peacefulness at the end of life) are published elsewhere. Secondary outcomes are reported herein, including (1) documentation of at least 1 serious illness conversation before death, (2) timing of the initial conversation before death, (3) quality of conversations, and (4) their accessibility in the electronic medical record (EMR).We enrolled 91 clinicians (48 intervention, 43 control) and 278 patients (134 intervention, 144 control). Of enrolled patients, 58% died during the study (n=161); mean age was 62.3 years (95% CI, 58.9-65.6 years); 55% were women (n=88). These patients were cared for by 76 of the 91 enrolled clinicians (37 intervention, 39 control); years in practice, 11.5 (95% CI, 9.2-13.8); 57% female (n=43). Medical record review after patients' death demonstrated that a significantly higher proportion of intervention patients had a documented discussion compared with controls (96% vs 79%, P = .005) and intervention conversations occurred a median of 2.4 months earlier (median, 143 days vs 71 days, P .001). Conversation documentation for intervention patients was significantly more comprehensive and patient centered, with a greater focus on values or goals (89% vs 44%, P .001), prognosis or illness understanding (91% vs 48%, P .001), and life-sustaining treatment preferences (63% vs 32%, P = .004). Documentation about end-of-life care planning did not differ between arms (80% intervention vs 68% control, P = .08). Significantly more intervention patients had documentation that was accessible in the EMR (61% vs 11%, P .001).This communication quality-improvement intervention resulted in more, earlier, better, and more accessible serious illness conversations documented in the EMR. To our knowledge, this is the first such study to demonstrate improvement in all 4 of these outcomes.ClinicalTrials.gov identifier: NCT01786811.

The NCCN Guidelines for Palliative Care provide interdisciplinary recommendations on palliative care for patients with cancer. The NCCN Guidelines are intended to provide guidance to the primary oncology team on the integration of palliative care into oncology. The NCCN Palliative Care Panel's recommendations seek to ensure that each patient experiences the best quality of life possible throughout the illness trajectory. Accordingly, the NCCN Guidelines outline best practices for screening, assessment, palliative care interventions, reassessment, and after-death care.

Purpose: The prevalence and severity of pain have not been well described among oncology patients in ambulatory care. To better understand the burden of pain among patients with advanced cancer, we examined the prevalence of pain reported during office and treatment visits. Methods: A retrospective study of 4,014 patients with advanced disease (stage 4 at diagnosis or metastatic progression) who completed an ambulatory visit between 2004 and 2006 was conducted at a comprehensive cancer center in Boston, Massachusetts. Results: At their first visit during the study period, 74% of patients reported no pain (0 score); 12%, low pain (1 to 3 score); 9%, moderate pain (4 to 6 score); and 5%, severe pain (7 to 10 score). The prevalence of pain was highest among patients who wereyoungerthan60yearsofage,werenonwhite,didnotspeak English as their primary language, or were covered by Medicaid, received free care, or paid their own health care costs. Patients with thoracic, breast, and head and neck cancers had higher pain scores than those with other diseases. Pain was reported more frequently among patients whose diagnosis or metastatic progression occurred less than 3 months before the reported pain score. In multivariable regression analysis, age, race, cancer type, and time since diagnosis/progression were identified as important factors associated with severe pain. Conclusion: Younger age, minority race, and recent onset of advanced disease are associated with severe pain among patients with cancer. Recognizing these high-risk groups could inform targeted interventions to address pain care in ambulatory patients with advanced cancer.

BACKGROUND: Although pain is common among patients with advanced cancer, little is known about longitudinal variability in pain intensity. For this report, the authors examined variability in pain intensity over 24 months among ambulatory patients with advanced stage cancers, associations between patient characteristics and within-patient pain variability, and the relation of pain variability to overall survival. METHODS: The sample comprised 949 patients with solid tumors who received care and reported pain scores in at least 3 different months within 24 months of their initial stage IV diagnosis during the period from 2004 to 2006. Pain intensity was measured using a scale ranging from 0 (no pain) to 10 (worst pain). Pain variability was defined as the standard deviation of the maximum monthly pain scores and was dichotomized at the 50th percentile into high and low variability groups. RESULTS: Considerable between-patient differences in pain variability (range, 0-5.77) were observed. Nonwhites, patients with a stage IV cancer diagnosed within the previous 3 months, and those with moderate or severe pain at baseline were more likely to experience high pain variability. Although patients with head and neck cancer generally had the highest pain variability, the intensity of their pain typically decreased over the disease course. High pain variability with worsening pain trajectory was associated with increased risk of death. CONCLUSIONS: Longitudinally, pain intensity was highly variable among patients with stage IV cancer. Minority patients, newly diagnosed patients, patients with head and neck cancer, and patients with moderate or severe pain at baseline were at higher risk of large fluctuations in pain intensity. Cancer 2012. © 2012 American Cancer Society.

Context Pain is common among patients with advanced cancer despite the dissemination of clinical pain care guidelines. Objectives We sought to assess the quality of pain care among patients with advanced disease. Methods We reviewed the records of 85 adult ambulatory patients with advanced breast, lung, and gastrointestinal cancer treated in 2004–2006. Patients' screening pain intensity scores were at least 7 of 10. Nurse reviewers completed medical record reviews of care rendered at the index visit and over the subsequent 30 days based on the 2004 National Comprehensive Cancer Network pain guideline. An expert panel then rated the quality of the evaluation, treatment, and overall pain care. We used a multivariable model to analyze guideline compliance and resolution of severe pain. Results Among advanced cancer patients with severe pain, clinicians adjusted pain medications only half the time and made few timely referrals for pain-related consultations. By 30 days after the index visit, 34% of patients continued to report severe pain. The expert panel judged the overall quality of pain care as "fair" or "poor" in about two-thirds of cases because more timely and effective intervention could have reduced the severity and duration of pain. Resolution of severe pain was associated with adjustment of pain medications at the index visit (adjusted odds ratio 3.8, 95% CI 1.3–10.6). Conclusion There is room for improvement in the pain care of patients with advanced cancer. Additional research is needed to understand the reasons for poor performance.

OBJECTIVES National palliative care guidelines outline spiritual care as a domain of palliative care, yet patients' religiousness and/or spirituality (R/S) are underappreciated in the palliative oncology setting. Among patients with advanced cancer receiving palliative radiation therapy (RT), this study aims to characterize patient spirituality, religiousness, and religious coping; examine the relationships of these variables to quality of life (QOL); and assess patients' perceptions of spiritual care in the cancer care setting. METHODS This is a multisite, cross-sectional survey of 69 patients with advanced cancer (response rate = 73%) receiving palliative RT. Scripted interviews assessed patient spirituality, religiousness, religious coping, QOL (McGill QOL Questionnaire), and perceptions of the importance of attention to spiritual needs by health providers. Multivariable models assessed the relationships of patient spirituality and R/S coping to patient QOL, controlling for other significant predictors of QOL. RESULTS Most participants (84%) indicated reliance on R/S beliefs to cope with cancer. Patient spirituality and religious coping were associated with improved QOL in multivariable analyses (β = 10.57, P < .001 and β = 1.28, P = .01, respectively). Most patients considered attention to spiritual concerns an important part of cancer care by physicians (87%) and nurses (85%). LIMITATIONS Limitations include a small sample size, a cross-sectional study design, and a limited proportion of nonwhite participants (15%) from one US region. CONCLUSION Patients receiving palliative RT rely on R/S beliefs to cope with advanced cancer. Furthermore, spirituality and religious coping are contributors to better QOL. These findings highlight the importance of spiritual care in advanced cancer care.

BACKGROUND: Pain is common among cancer patients.OBJECTIVE: To characterize the incidence of severe pain among newly diagnosed patients with stage IV cancer in ambulatory care.METHODS: A retrospective cohort of 505 ambulatory oncology patients with newly diagnosed stage IV solid tumours at a comprehensive cancer centre (Dana-Farber Cancer Institute, Boston, Massachusetts, USA) was followed from January 1, 2004, to December 31, 2006. Pain intensity scores were extracted from electronic medical records. The incidence of severe pain was calculated using the maximum monthly pain scores reported at outpatient visits.RESULTS: Of the 505 patients included in the present study, 340 (67.3%) were pain-free at the initial visit, 90 (17.8%) experienced mild pain, 48 (9.5%) experienced moderate pain and 27 (5.4%) experienced severe pain. At least one episode of severe pain within one year of diagnosis was reported by 29.1% of patients. Patients with head and neck, gastrointestinal and thoracic malignancies were more likely to experience severe pain compared with patients with other types of cancer (52.6%, 33.9% and 30.5%, respectively). In the multivariable model, patients whose primary language was not English (OR 2.90 [95% CI 1.08 to 7.80]), patients who reported severe pain at the initial visit (OR 9.30 [95% CI 3.72 to 23.23]) and patients with head and neck (OR 10.17 [95% CI 2.87 to 36.00]) or gastrointestinal (OR 4.05 [95% CI 1.23 to 13.35]) cancers were more likely to report severe pain in the following year.CONCLUSIONS: The incidence of severe pain was high in ambulatory patients with newly diagnosed stage IV cancer.

Religion and/or spirituality (R/S) have increasingly been recognized as key elements in patients' experience of advanced illness. This study examines the relationship of spiritual concerns (SCs) to quality of life (QOL) in patients with advanced cancer.Patients were recruited between March 3, 2006 and April 14, 2008 as part of a survey-based study of 69 cancer patients receiving palliative radiotherapy. Sixteen SCs were assessed, including 11 items assessing spiritual struggles (e.g., feeling abandoned by God) and 5 items assessing spiritual seeking (e.g., seeking forgiveness, thinking about what gives meaning in life). The relationship of SCs to patient QOL domains was examined using univariable and multivariable regression analysis.Most patients (86%) endorsed one or more SCs, with a median of 4 per patient. Younger age was associated with a greater burden of SCs (β = -0.01, p = 0.006). Total spiritual struggles, spiritual seeking, and SCs were each associated with worse psychological QOL (β = -1.11, p = 0.01; β = -1.67, p 0.05; and β = -1.06, p 0.001). One of the most common forms of spiritual seeking (endorsed by 54%)--thinking about what gives meaning to life--was associated with worse psychological and overall QOL (β = - 5.75, p = 0.02; β = -12.94, p = 0.02). Most patients (86%) believed it was important for health care professionals to consider patient SCs within the medical setting.SCs are associated with poorer QOL among advanced cancer patients. Furthermore, most patients view attention to SCs as an important part of medical care. These findings underscore the important role of spiritual care in palliative cancer management.

BACKGROUND: Although spiritual care is associated with less aggressive medical care at the end of life (EOL), it remains infrequent. It is unclear if the omission of spiritual care impacts EOL costs. METHODS: A prospective, multisite study of 339 advanced cancer patients accrued subjects from September 2002 to August 2007 from an outpatient setting and followed them until death. Spiritual care was measured by patients' reports that the health care team supported their religious/spiritual needs. EOL costs in the last week were compared among patients reporting that their spiritual needs were inadequately supported versus those who reported that their needs were well supported. Analyses were adjusted for confounders (eg, EOL discussions). RESULTS: Patients reporting that their religious/spiritual needs were inadequately supported by clinic staff were less likely to receive a week or more of hospice (54% vs 72.8%; P = .01) and more likely to die in an intensive care unit (ICU) (5.1% vs 1.0%, P = .03). Among minorities and high religious coping patients, those reporting poorly supported religious/spiritual needs received more ICU care (11.3% vs 1.2%, P = .03 and 13.1% vs 1.6%, P = .02, respectively), received less hospice (43.% vs 75.3% ≥1 week of hospice, P = .01 and 45.3% vs 73.1%, P = .007, respectively), and had increased ICU deaths (11.2% vs 1.2%, P = .03 and 7.7% vs 0.6%, P = .009, respectively). EOL costs were higher when patients reported that their spiritual needs were inadequately supported ($4947 vs $2833, P = .03), particularly among minorities ($6533 vs $2276, P = .02) and high religious copers ($6344 vs $2431, P = .005). CONCLUSIONS: Cancer patients reporting that their spiritual needs are not well supported by the health care team have higher EOL costs, particularly among minorities and high religious coping patients. Cancer 2011;. © 2011 American Cancer Society.

Although prayer potentially serves as an important practice in offering religious/spiritual support, its role in the clinical setting remains disputed. Few data exist to guide the role of patient-practitioner prayer in the setting of advanced illness.To inform the role of prayer in the setting of life-threatening illness, this study used mixed quantitative-qualitative methods to describe the viewpoints expressed by patients with advanced cancer, oncology nurses, and oncology physicians concerning the appropriateness of clinician prayer.This is a cross-sectional, multisite, mixed-methods study of advanced cancer patients (n=70), oncology physicians (n=206), and oncology nurses (n=115). Semistructured interviews were used to assess respondents' attitudes toward the appropriate role of prayer in the context of advanced cancer. Theme extraction was performed based on interdisciplinary input using grounded theory.Most advanced cancer patients (71%), nurses (83%), and physicians (65%) reported that patient-initiated patient-practitioner prayer was at least occasionally appropriate. Furthermore, clinician prayer was viewed as at least occasionally appropriate by the majority of patients (64%), nurses (76%), and physicians (59%). Of those patients who could envision themselves asking their physician or nurse for prayer (61%), 86% would find this form of prayer spiritually supportive. Most patients (80%) viewed practitioner-initiated prayer as spiritually supportive. Open-ended responses regarding the appropriateness of patient-practitioner prayer in the advanced cancer setting revealed six themes shaping respondents' viewpoints: necessary conditions for prayer, potential benefits of prayer, critical attitudes toward prayer, positive attitudes toward prayer, potential negative consequences of prayer, and prayer alternatives.Most patients and practitioners view patient-practitioner prayer as at least occasionally appropriate in the advanced cancer setting, and most patients view prayer as spiritually supportive. However, the appropriateness of patient-practitioner prayer is case specific, requiring consideration of multiple factors.

Purpose: Little is known about communication with patients suffering from hematologic malignancies, many of whom are seen by subspecialists in consultation at tertiary-care centers. These subspecialized consultations might provide the best examples of optimal physician–patient communication behaviors, given that these consultations tend to be lengthy, to occur between individuals who have not met before and may have no intention of an ongoing relationship, and which have a goal of providing treatment recommendations. The aim of this paper is to describe and quantify the content of the subspecialty consultation in regards to exchanging information and identify patient and provider characteristics associated with discussion elements. Methods: Audio-recorded consultations between 236 patients and 40 hematologists were coded for recommended communication practices. Multilevel models for dichotomous outcomes were created to test associations between patient, physician and consultation characteristics and key discussion elements. Results: Discussions about the purpose of the visit and patient's knowledge about their disease were common. Other elements such as patient's preference for his/her role in decision-making, preferences for information, or understanding of presented information were less common. Treatment recommendations were provided in 97% of the consultations and unambiguous presentations of prognosis occurred in 81% of the consultations. Unambiguous presentations of prognosis were associated with non-White patient race, lower educational status, greater number of questions asked, and specific physician provider. Conclusion: Although some communication behaviors occur in most consultations, others are much less common and could help tailor the amount and type of information discussed. Approximately half of the patients are told unambiguous prognostic estimates for mortality or cure. Copyright © 2011 John Wiley & Sons, Ltd.

This article reviews common sources of suffering in patients with advanced illness, identifies challenges in appropriately diagnosing and treating depression in this setting, and examines the relationship between depression and other key clinical outcomes in the setting of advanced disease. A systematic literature review was conducted. Most of the existing research on patients with advanced illness has been conducted with cancer patients. Approximately 18 percent of patients with advanced illness meet criteria for major or minor depression; multiple psychiatric co-morbidities occur frequently. Prevalence rates increase as patients become sicker. However, depression is frequently underdiagnosed and undertreated in the setting of advanced illness. One of the key clinical challenges is differentiating depression from grief. Both psychosocial and psychopharmacologic interventions have been shown to be effective in treating depression in patients with advanced cancer. In conclusion, depression is a regular complication of advanced illness, reduces quality of life, compromises family member function, interferes with treatment decisions, and may shorten survival. However, numerous effective treatment approaches, including both medications and psychotherapy, exist and can be used to alleviate depression.

Purpose Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences. Methods This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians. Results Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P = .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] = 2.26; P < .0001) and among patients who were aware they were terminally ill (OR = 3.94; P = .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P = .03) among patients for whom such care was consistent with preferences. Conclusion Patients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.

Several studies have shown that the symptoms of grief are different from symptoms of depression among bereaved family members. This study is an attempt to replicate this finding among advanced cancer patients and examine clinical correlates of patient grief and depression. Analyses were conducted on data from interviews with 123 advanced cancer patients. Grief was measured using symptoms from the patient version of the Inventory of Complicated Grief-Revised (ICG-R) and symptoms of depression were assessed using the Structured Clinical Interview for DSM-IV (SCID). A factor analysis revealed that symptoms of patient grief formed a coherent factor that was distinct from a depression factor. Patient grief "caseness" (defined as being in the top 10% of the distribution of grief scores), but not major depressive disorder, was uniquely associated with the wish to die (odds ratio [OR] 10.13 [0.1.08-95.06]). Both depression and grief were significantly associated with mental health service use (OR 16.07 [1.68, 153.77] vs. 4.82; CI = [1.09, 21.41]) and negative religious coping (OR 1.36 [1.06, 1.73] vs. 1.25 [1.05, 1.49]); neither was associated with terminal illness acknowledgement.

BACKGROUND Families' communication needs during the early cancer treatment period (ECTP) may not be optimally met by current practices. We sought to identify potential communication gaps and to ameliorate these by developing a novel in-depth conversation between families and their pediatric oncologists, the "Day 100 Talk" (D100), during the ECTP. PROCEDURE We conducted semistructured interviews with parents and patients undergoing childhood cancer treatment for

PurposeBlack patients are more likely than white patients to receive life-prolonging care near death. This study examined predictors of intensive end-of-life (EOL) care for black and white advanced cancer patients.Patients and MethodsThree hundred two self-reported black (n = 68) and white (n = 234) patients with stage IV cancer and caregivers participated in a US multisite, prospective, interview-based cohort study from September 2002 to August 2008. Participants were observed until death, a median of 116 days from baseline. Patient-reported baseline predictors included EOL care preference, physician trust, EOL discussion, completion of a Do Not Resuscitate (DNR) order, and religious coping. Caregiver postmortem interviews provided information regarding EOL care received. Intensive EOL care was defined as resuscitation and/or ventilation followed by death in an intensive care unit.ResultsAlthough black patients were three times more likely than white patients to receive intensive EOL care (adjusted odds ratio [aOR] = 3.04, P = .037), white patients with a preference for this care were approximately three times more likely to receive it (aOR = 13.20, P = .008) than black patients with the same preference (aOR = 4.46, P = .058). White patients who reported an EOL discussion or DNR order did not receive intensive EOL care; similar reports were not protective for black patients (aOR = 0.53, P = .460; and aOR = 0.65, P = .618, respectively).ConclusionWhite patients with advanced cancer are more likely than black patients with advanced cancer to receive the EOL care they initially prefer. EOL discussions and DNR orders are not associated with care for black patients, highlighting a need to improve communication between black patients and their clinicians.

Twenty four percent of cancer patients have children under the age of eighteen.1 Patients with advanced cancer and dependent children must consider the effect their disease and treatment options will have on their roles as parents. Careful consideration of the end-of-life (EOL) offers patients the opportunity to prepare their families, as best they can, for what lies ahead. However, planning for the EOL may be particularly difficult for patients with dependent children because it requires them to confront the possibility of not being present to raise their children.2 Patients with dependent children may have an increased willingness to undergo burdensome aggressive treatments in an effort to secure more time with their children.3 A study of breast cancer patients suggested those who lived with and supported dependents were more likely to view smaller gains in length of live from adjuvant chemotherapy as worthwhile despite therapy side effects.4,5 Previous qualitative studies describe how a child's cancer affects their parents and siblings,6,7 how parents' cancers impact children,8 and the ways that children grieve after losing a parent to cancer.9-13 A thorough review of this literature revealed no empirical studies examining the influence that having dependent children has on advanced cancer patients' mental health, receipt of aggressive care, hospice use, and location and quality of death. The aim of this study was to examine quantitatively the differences in EOL outcomes based upon advanced cancer patients' dependent child status. Using data from a multi-center, longitudinal, prospective study of advanced cancer patients, we examined whether patients' baseline mental health, treatment preferences, and advance care planning differed based on whether or not the patient had dependent children. In the subset of caregivers that were spouses of the patients we examined how the dependent child status of the patient affected the mental health of the caregiver. We also determined whether patients' dependent children status affected the type of care received in the last week of life, as well as the patients' overall quality of life in the last week of life. We hypothesized that advanced cancer patients with dependent children would be more anxious and less likely to engage in advance care planning initiatives such as Do Not Resuscitate (DNR) orders and living wills. We expected that they would prefer aggressive care to extend life, and be more likely to receive it near death. We hypothesized that they would be less likely to die in an inpatient hospice facility and more likely to die at home due to their wishes for aggressive care and desire to remain home as long as possible with their children. We also predicted that these patients would have worse quality of life in the last week of life due to burdensome efforts to prolong their life as long as possible.

PurposeDespite well-documented racial and ethnic differences in advance care planning (ACP), we know little about why these differences exist. This study tested proposed mediators of racial/ethnic differences in ACP.Patients and MethodsWe studied 312 non-Hispanic white, 83 non-Hispanic black, and 73 Hispanic patients with advanced cancer in the Coping with Cancer study, a federally funded multisite prospective cohort study designed to examine racial/ethnic disparities in ACP and end-of-life care. We assessed the impact of terminal illness acknowledgment, religiousness, and treatment preferences on racial/ethnic differences in ACP.ResultsCompared with white patients, black and Hispanic patients were less likely to have an ACP (white patients, 80%; black patients, 47%; Hispanic patients, 47%) and more likely to want life-prolonging care even if he or she had only a few days left to live (white patients, 14%; black patients, 45%; Hispanic patients, 34%) and to consider religion very important (white patients, 44%; black patients, 88%; Hispanic patients, 73%; all P < .001, comparison of black or Hispanic patients with white patients). Hispanic patients were less likely and black patients marginally less likely to acknowledge their terminally ill status (white patients, 39% v Hispanic patients, 11%; P < .001; white v black patients, 27%; P = .05). Racial/ethnic differences in ACP persisted after adjustment for clinical and demographic factors, terminal illness acknowledgment, religiousness, and treatment preferences (has ACP, black v white patients, adjusted relative risk, 0.64 [95% CI, 0.49 to 0.83]; Hispanic v white patients, 0.65 [95% CI, 0.47 to 0.89]).ConclusionAlthough black and Hispanic patients are less likely to consider themselves terminally ill and more likely to want intensive treatment, these factors did not explain observed disparities in ACP.