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During acute health decompensations for seriously ill patients, emergency clinicians often determine the intensity end-of-life care. Little is known about how emergency clinicians conduct these conversations, especially among those who have received serious illness communication training.To determine the self-reported practice patterns of code status conversations by emergency clinicians with and without serious illness communication training.A cross-sectional survey was conducted among emergency clinicians with and without a recent evidence-based, serious illness communication training tailored for emergency clinicians. Emergency clinicians were included from two academic medical centers. A five-point Likert scale ("very unlikely" to "very likely" to ask) was used to assess the self-reported likelihood of asking about patients' preferences for medical procedures and patients' values and goals.Among 161 respondents (71% response rate), 77 (48%) received the training. A total of 70% of emergency clinicians reported asking about procedure-based questions, and only 38% reported asking about patient's values regarding end-of-life care. For value-based questions, statistically significant differences were observed between emergency clinicians who underwent the training and those who did not in four of the seven questions asked (e.g., the higher odds of exploring the patient's life priorities [adjusted OR = 4.34, 95% CI = 1.95-9.65, P-value0.001]). No difference was observed in the self-reported rates of all procedure-based questions between the two groups.Most emergency clinicians reported asking about procedure-based questions, and some asked about patient's value-based questions. Clinicians with recent serious illness communication training may ask more about some values and priorities.

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 and Objectives Advance care planning (ACP) conversations are important to provide goal-concordant care (i.e., the care that matches the patient’s previously stated goals) near end of life. While 31% of older adults presenting to the emergency department (ED) have dementia, only 39% have previously had ACP conversations. We refined and piloted an ED-based, motivational interview designed to stimulate ACP conversations (ED GOAL) for patients living with cognitive impairment and their caregivers. Research Design and Methods We systematically refined ED GOAL and then conducted an acceptability study in an urban, academic medical center. We prospectively enrolled adults aged 50+ with cognitive impairment and their caregivers. Trained clinicians conducted the intervention. We measured acceptability after the intervention and participants’ ACP engagement at baseline and 1-month follow-up. Results Specific statements to address both the patient and caregiver were added to the ED GOAL script. Of 60 eligible patient/caregiver dyads approached, 26 participated, and 20 (77%) completed follow-up assessments. Patient mean age was 79 years (SD 8.5); 65% were female, 92.3% were White, 96.2% were non-Hispanic, and 69% had moderate dementia. Most patients/caregivers reported feeling completely heard and understood by the study clinician about their future medical care preferences (58%, 15/26). They also reported that the study clinician was very respectful (96%, 25/26) when eliciting those preferences. Discussion and Implications Patients living with cognitive impairment and their caregivers found our refined ED GOAL acceptable and respectful. Future studies need to examine the effect of ED GOAL on ACP engagement among these dyads in the ED.

This chapter traces a series of losses and their vicissitudes through ten years in the life of a palliative care leader. It explores their impact on family, relationships, work, planning for the future, and the process of moving through and beyond this difficult time.

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: Failure to initiate discussions about patients' values and goals in serious illness remains a common problem. Many clinicians are inadequately trained for these discussions. Objective: ...

Clinician-led conversations about future care priorities occur infrequently with end-stage renal disease (ESRD) patients on dialysis. This was a pilot study of structured serious illness conversations using the Serious Illness Conversation Guide (SICG) in a single dialysis clinic to assess acceptability of the approach and explore conversation themes and potential outcomes among patients with ESRD. Twelve individuals with ESRD on dialysis from a single outpatient dialysis clinic participated in this study. Participants completed a baseline demographics survey, engaged in a clinician-led structured serious illness conversation, and completed an acceptability questionnaire. Conversations were recorded, transcribed and thematically analyzed. The average age of participants was 68.8 years. The conversations averaged 20:53 in length. Ten participants (83%) felt that the conversation was held at the right time in their clinical course and eleven participants (91%) felt that it was worthwhile. Most participants (73%) reported neutral feelings about clinician use of a printed guide. Eleven participants (91%) reported no change in anxiety about their illness following the conversation, and five participants (42%) reported that the conversation increased their hopefulness about future quality of life. Thematic analysis revealed common perspectives on dialysis including that participants view in-center hemodialysis as temporary, compartmentalize their kidney disease, perceive narrowed life experiences and opportunities, and believe dialysis is their only option. This pilot study suggests that clinician-led structured serious illness conversations may be acceptable to patients with ESRD on dialysis. The themes identified can inform future serious illness conversations with dialysis patients.

Objectives: Identifying family members at-risk of poor bereavement outcomes poses a challenge for clinicians, resulting in inconsistent bereavement follow-up. The current quality improvement study tests a method for identification of at-risk family members, and describes follow-up they received from the bereavement service at Dana-Farber Cancer Institute.Design: A standardized bereavement risk assessment, referral and follow-up process was piloted as part of a quality improvement project using a plan-do-study-act approach (PDSA).Methods: A convenience sample of eleven clinical social workers completed paper and pencil bereavement risk-screening assessments using the Bereavement Risk-Screening Tool (BRST) on a sample of bereaved family members known to them. The results of the BRST were passed onto the bereavement program for follow-up.Findings: Eleven out of a total of 17 social workers participated in the study. Social workers screened 100% (52/52) of identified bereaved family members, corresponding to 52 patient deaths. Approximately half (28/52) were identified as being 'at-risk' of a poor bereavement outcome based on the social worker's consideration of the presence of potential risk-factors and their response to a prediction-type question about the bereaved individual's future coping. 'Lack of preparation for the death', 'unexpected death within the context of an illness' and 'witnessing a difficult death' were the most commonly identified risk factors. Of those individuals who were identified to be 'at-risk', 89% received an outreach attempt by telephone from the director of bereavement services, surpassing our project target of 80%. Conclusions: The BRST has the potential to help clinicians in health care settings identify those family members who might be considered at heightened risk of a poor bereavement outcome, facilitating early outreach and recommendations for support. The tool was easy to complete and helped streamline the referral process to the bereavement program.

OBJECTIVE Adolescents and young adults (AYAs) with cancer have high rates of psychological distress and unmet support needs. Peace of mind is an important construct among older cancer patients and parents of children with cancer but has not been explored in AYAs. We sought to evaluate the extent to which AYAs with cancer experience peace of mind and to identify factors associated with greater peace of mind. METHODS We surveyed 193 AYAs with cancer aged 15 to 29 years within 12 weeks of diagnosis; 137 patients completed the same measures again 4 and 12 months after diagnosis. Patients were asked to report peace of mind, measured using items from the Functional Assessment of Chronic Illness, Spiritual Well-being scale (FACIT-Sp); anxiety and depression, using the Hospital Anxiety and Depression Scale (HADS); and experiences surrounding medical communication and decision making. RESULTS Mean scores for peace of mind were 3.59 at diagnosis (range 1-5, standard deviation 0.84), with similar scores at 4 (3.53, P = .34) and 12 (3.59, P = .94) months. In a multivariable model adjusted for age and gender, patients who reported receiving high-quality information about their cancer had greater peace of mind at diagnosis (β = .25, P = .03), whereas those who reported holding a passive role in treatment decision making (β = -.47, P

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

Conversations about palliative care pose multiple challenges for patients, families, and clinicians. This chapter emphasizes the critical role of relationships in communication, highlights common practical challenges that arise in communication about palliative care issues, and proposes specific strategies for addressing them. Examples of language that expresses key clinician interventions is included. Patient-related communication challenges include dealing with anxiety, denial, anger, and grief and sadness. Approaches to family communication challenges focus on the desire to protect the patient, unexpressed grief, and unrealistic expectations, while those related to the clinician include attachment and grief, and discussing prognosis. The role of patient and family preparation, fostered through early, direct, and gentle conversations, is emphasized as a key practice that supports coping and adaptation. Clinicians are conceptualized as supporting patients through attention to the patient and family as persons, the use of skilful interpersonal communication, authenticity, and a commitment to ongoing self-reflection and flexibility.

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.

Adolescent and young adult (AYA) cancer patients enroll in therapeutic clinical trials at low rates. Prior study has focused on trial availability; this research attempts to elucidate the role of communication in individual decision-making. We surveyed 193 AYA patients and reviewed medical records of informed consent discussions. Twenty percent (38/193) of patients were offered trials, 58% (22/38) enrolled. Many were unable to correctly identify whether they were offered trials or enrolled, including 27% (6/22) of patients on clinical trials who believed that they were not. Efforts to improve communication have potential to enhance informed decision-making in this vulnerable population.

Background: Bereavement programs provide institutions with an avenue for obtaining feedback from family members about their experiences during a patient's illness and end-of-life (EOL) period that can be used to improve both patient care and the care of bereaved individuals. Objective: We examined family members' experiences about the clinical care their loved one received at EOL and the perceived effect this care had on their subsequent bereavement. Design: Survey. Setting/Subjects: One hundred forty bereaved family members from our cancer institute completed a bereavement survey. Of these family members, 67% were female, 66% were 60 years of age or older, and 81% were widowed. Measurement: We analyzed open-ended responses using NVivo 11 Plus© that asked bereaved family members about the ways the clinical (oncology) team was helpful or not in dealing with their loss. Results: The findings showed that compassionate care, competency, receiving honest facts, and outreach after the death favorably influenced the bereavement experience. Conversely, impersonal contact, lack of contact, including lack of caregiver support, and lack of information about EOL and death were identified as actions taken by the clinical team that were unhelpful in dealing with their loss. Conclusions: The feedback from bereaved family members highlights two areas that could benefit from quality improvement efforts: (1) communication skills that focus on enhancing compassionate connection, including conveying empathy, and providing reassurance and guidance to patients and their families and (2) communication skills that focus on delivering information about prognosis and the EOL period in an honest and direct way.

Purpose Communication about prognosis affects decisions patients and family members make about cancer care, and most patients say they want to know about their chances of cure. We sought to evaluate experiences with prognosis communication among adolescents and young adults (AYAs) with cancer. Patients and Methods We surveyed 203 AYAs with cancer age 15 to 29 years (response rate, 74%) treated at Dana-Farber Cancer Institute and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report on their prognosis communication preferences and experiences, their beliefs about likelihood of cure, and psychosocial outcomes of communication, such as trust (using an item from the Trust in Physician Scale), peace of mind (using select items from the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale), and anxiety and depression (using the Hospital Anxiety and Depression Scale). Oncologists were asked to report the patient’s likelihood of cure. Results Most patients (83%, 167 of 203 patients) considered prognostic information to be extremely or very important. Patients who reported having received more extensive prognostic disclosure had higher odds of trust in the oncologist (odds ratio [OR], 1.30; 95% CI, 1.01 to 1.67; P = .05), peace of mind (OR, 2.13; 95% CI, 1.29 to 3.51; P = .002), and hope related to physician communication (OR, 1.27; 95% CI, 1.01 to 1.59; P = .04), after adjusting for patient sex, age, race or ethnicity, prognosis, and diagnosis. Disclosure was also associated with lower distress related to knowing about prognosis (OR, 0.65; 95% CI, 0.44 to 0.95; P = .03). However, a majority of patients (62%) reported prognostic estimates that exceeded those reported by physicians (McNemar P < .001). Conclusion Most AYAs with cancer value receiving prognostic information, which is positively associated with aspects of well-being. However, most overestimate chances of cure relative to oncologists, highlighting the importance of efforts to improve communication with this young population.

ObjectiveWe aimed to explore multiple perspectives regarding barriers to and facilitators of advance care planning (ACP) among African Americans to identify similarities or differences that might have clinical implications.MethodQualitative study with health disparities experts (n = 5), community members (n = 9), and seriously ill African American patients and caregivers (n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.ResultParticipants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.Significance of resultsThe literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.

Improving communication about goals and values for patients with advancing serious illness nearing the end of life is a key opportunity to improve the value of care. The Serious Illness Care Program, implemented at primary care clinics affiliated with Brigham and Women's Hospital in Boston, Massachusetts, is a multicomponent intervention designed to support best practices in communication by clinicians to increase conversations with patients with serious illness about their goals and values. We conducted a study of the program in fourteen primary care clinics participating in a high-risk care management program based in an accountable care organization. Patients in the clinics with the program implemented were more likely than those in comparison clinics to have serious illness conversations-including discussion of values and goals-documented in patients' medical records. Clinicians who participated also reported high satisfaction with training they received as part of the program, which they regarded as effective. This work suggests that the Serious Illness Care Program promotes more and better conversations among selected primary care patients, and it highlights the need for further research.

In 2014 the World Health Organization called for palliative care to be integrated as an essential element of the health care continuum. Yet in 2017 US palliative care services are found largely in hospitals, and hospice care, which is delivered primarily in the home, is limited to people who are dying soon. The majority of Americans with a serious illness are not dying; are living at home, in assisted living facilities, or in nursing homes; and have limited access to palliative care. Most health care providers lack knowledge about and skills in pain and symptom management, communication, and care coordination, and both the public and health professionals are only vaguely aware of the benefits of palliative care and how and when to access it. The lack of policy supports for palliative care contributes to preventable suffering and low-value care. In this article we outline the need for a national palliative care strategy to ensure reliable access to high-quality palliative care for Americans with serious medical illnesses. We review approaches employed by other countries, list the participants needed to develop and implement an actionable strategy, and identify analogous US national health initiatives to inform a process for implementing the strategy.

Chronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates.We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed.One long-term acute care hospital.Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates.Semi-structured conversation about quality of life, expectations, and planning for setbacks.A total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year.Our study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

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.

Background Adolescents and young adults (AYAs) experience cancer while balancing emerging identity and life goals. We investigated AYAs' priorities during cancer, including psychosocial concerns, cure-directed therapy, and potential late effects. Methods We surveyed 203 cancer patients aged 15-29 treated at Dana-Farber Cancer Institute, Boston, Massachusetts, and their oncologists. Patients were approached and rated the importance of aspects of treatment, outcomes, and life during therapy. Response options were "extremely," "very," "somewhat," "a little important," or "not at all important." Ratings of "extremely" or "very important" were used as indicators of strong priorities. Results Patients' three most frequent priorities were cure (97%), being good to the people they care about (95%), and having supportive people around them (94%). Most prioritized being with family (90%), returning to school/work (89%), maintaining relationships with friends (88%), and feeling normal (85%). Fewer prioritized minimizing long-term (78%) and acute side effects (68%) and fertility (59%). Many participants (88%) said that cure influenced their decisions "a great deal," while fewer were influenced by side effects (32%), fertility (36%), or relationships (16%). Most patients (85%) thought their oncologist understood what was most important to them when treatment started. Conclusion Nearly all AYA cancer patients prioritize cure, while maintaining social relationships and a sense of normalcy. These priorities influence decisions they make about treatment to differing degrees, with cure influencing decision-making for most patients. Although the priority of cure is well established, recognizing other AYA priorities allows providers to optimally support these patients from the time of diagnosis.

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.

As the field of Pediatric Palliative Care continues to develop, it is important to consider the scope of practice and the utility of collaboration with other specialties, including child and adolescent psychiatry. The integration of psychiatry and palliative medicine has been explored in adult practice, but has not yet been elaborated in pediatrics. This article proposes a clinical model of care that highlights the overlapping and unique expertise that each discipline brings, in a continuum of collaboration, and proposes an integrated care model for the most complex patients and families. Case examples are used to define specific professional skills and roles, and to describe shared and distinct clinical approaches used by pediatric palliative care and child psychiatry. Effective collaboration provides opportunities for cross-disciplinary educational exchange and enhanced care of children and families with comorbid mental health issues and serious illness.

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.

Few studies have focused on racial and ethnic differences in advance care planning other than advance directives among population-based samples of adults across the lifespan.Using data from a statewide random-digit dial telephone survey of adults 18 years or older (n = 1851), we investigated racial and ethnic differences in (1) designation of a healthcare agent (HCA); and (2) communication of goals, values, and preferences for end-of-life care with healthcare providers, a HCA, or other family members and friends.Less than half (44%, 95% confidence interval [CI] = 41.3%-47.0%) of all participants had named a HCA. In multivariable analyses, participants who identified as Hispanic (adjusted odds ratio [aOR] = 0.4, 95% CI = 0.2-0.7) or non-Hispanic other (aOR = 0.6, 95% CI = 0.4-0.9) were less likely than non-Hispanic whites to have named a HCA. Only 14.5% (95% CI = 12.6%-16.5%) of all participants had ever had a conversation with a healthcare provider about their end-of-life care wishes, with no differences by race/ethnicity. Over half (53.9%, 95% CI = 51.0%-56.8%) of all participants reported having had conversations with someone other than a healthcare provider about their end-of-life wishes. In multivariable analyses, non-Hispanic whites were more likely than Hispanics (aOR = 0.5, 95% CI = 0.3-0.7), black/African Americans (aOR = 0.5, 95% CI = 0.3-0.9), and non-Hispanic others (aOR = 0.7, 95% CI = 0.5-1.0) to report having had such conversations.Racial and ethnic minorities may be disadvantaged in the quality of care they receive if they have a serious illness and are unable to make decisions for themselves because most have not talked to anyone about their goals, values, or preferences for care.

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.

To develop a set of clinically relevant recommendations to improve the state of advance care planning (ACP) documentation in the electronic health record (EHR).Advance care planning (ACP) is a key process that supports goal-concordant care. For preferences to be honored, clinicians must be able to reliably record, find, and use ACP documentation. However, there are no standards to guide ACP documentation in the electronic health record (EHR).We interviewed 21 key informants to understand the strengths and weaknesses of EHR documentation systems for ACP and identify best practices. We analyzed these interviews using a qualitative content analysis approach and subsequently developed a preliminary set of recommendations. These recommendations were vetted and refined in a second round of input from a national panel of content experts.Informants identified six themes regarding current inadequacies in documentation and accessibility of ACP information and opportunities for improvement.We offer a set of concise, clinically relevant recommendations, informed by expert opinion, to improve the state of ACP documentation in the EHR.

Although bereavement programs are a common element of palliative medicine and hospice programs, few health care institutions currently offer universal bereavement services to all their patients. The elevated risk of serious physical and mental health problems among the bereaved is a strong argument for the development of universal institution-based bereavement programs as an element of quality care for family members of all patients who die.We describe the development of the bereavement program at Dana-Farber Cancer Institute (DFCI) where we conceptualized bereavement services as a preventive model of care.We identified education, guidance and support as the primary constructs of the program. The essential components include a formal acknowledgement of the death of the patient by the cancer center, information about grief and what to expect, individual visits to assess coping, and staff support and education.One hundred and forty bereaved families completed a survey about the bereavement program.The findings indicated that the formal letter of condolence and the bereavement guide had a positive impact on the grieving of the respondents. Contact from the patient's oncologist and nurse was especially well received.Bereavement programs can both help bereaved individuals adapt to their loss, and positively impact hospitals by enhancing the reputation of the hospital within the community and providing an avenue for identifying opportunities for improvement in care processes. We recommend that all hospitals implement basic bereavement programs for families of all deceased patients as the standard of care.

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.

To provide a description of communication breakdowns and to identify interventions to improve surgical decision making for elderly patients with serious illness and acute, life-threatening surgical conditions.Communication between surgeons, patients, and surrogates about goals of treatment plays an important and understudied role in determining the surgical interventions elderly patients with serious illness receive. Communication breakdowns may lead to nonbeneficial procedures in acute events near the end of life.We review the available literature on factors that lead to communication challenges and nonbeneficial surgery at the end of life. We use this review to identify solutions for navigating surgical decision making for seriously ill elderly patients with acute surgical conditions.Surgeon, patient, surrogate, and systemic factors-including time constraints, inadequate provider communication skills and training, uncertainty about prognosis, patient and surrogate anxiety and fear of inaction, and limitations in advance care planning-contribute to communication challenges and nonbeneficial surgery at the end of life. Surgeons could accomplish more effective communication with seriously ill elderly patients if they had a structured, standardized approach to exploring patients' preferences and to integrating those preferences into surgical decisions in the acute setting.Improved communication among surgeons, patients, and surrogates is necessary to ensure that patients receive the care that they want and to avoid nonbeneficial treatment. Further research is needed to learn how to best structure these conversations in the emergency surgical setting.

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.