Perceptions of Palliative Care Among Patients With Kidney Allograft Dysfunction: A Qualitative Study.

Rationale & Objective: Nearly half of kidney transplant recipients develop allograft failure within 10 years of transplantation and experience high mortality, significant symptom burden, and complex communication challenges. These patients may benefit from palliative care, but palliative care is infrequently provided in this population. This study explores palliative care perceptions and needs among patients with poorly functioning and declining kidney allografts.

Preferred and Actual Location of Death in Adolescents and Young Adults With Cancer.

Importance: Adolescent and young adult (AYA) patients with advanced cancer often die in hospital settings. Data characterizing the degree to which this pattern of care is concordant with patient goals are sparse.

Objective: To evaluate the extent of concordance between the preferred and actual location of death among AYA patients with cancer.

Evolution in Documented Goals of Care at End of Life for Adolescents and Younger Adults With Cancer.

Importance: Little is known about the nature of change in goals of care (GOC) over time among adolescents and younger adult (AYA) patients aged 12 to 39 years with cancer near the end of life. Understanding how GOC evolve may guide clinicians in supporting AYA patients in making end-of-life decisions.

Objective: To assess frequency, timing, and evolution of documented GOC among AYA patients with cancer in the last 90 days of life.

Development and Usability of an Advance Care Planning Website (My Voice) to Empower Patients With Heart Failure and Their Caregivers: Mixed Methods Study.

Background: Web-based advance care planning (ACP) interventions offer a promising solution to improve ACP engagement, but none are specifically designed to meet the needs of patients with heart failure and their caregivers.

Objective: We aimed to develop and assess the usability and acceptability of a web-based ACP decision aid called "My Voice," which is tailored for patients with heart failure and their caregivers.

Methods: This study's team and advisory board codeveloped the content for both patient and caregiver modules in "My Voice.

Facilitated Advance Care Planning Interventions: A Narrative Review.

Multiple interventions have been designed to employ facilitators to address gaps in Advance Care Planning (ACP). To collect and review available evidence related to facilitated ACP interventions. Narrative review using a previously described framework for scoping reviews.

Using implementation science to encourage Serious Illness Conversations on general medicine inpatient services: An interrupted time series.

Background: Serious Illness Conversations (SICs) are not consistently integrated into existing inpatient workflows.

Objective: We assessed the implementation of multiple interventions aimed at encouraging SICs with hospitalized patients.

Methods: We used the Consolidated Framework for Implementation Research to identify determinants for conducting SICs by interviewing providers and the Expert Recommendations for Implementing Change to develop a list of interventions.

Timing and content of serious illness conversations for patients with advanced heart failure in a specialty-aligned palliative care service.

Background: Patients with advanced heart failure (AHF) desire communication around values and goals prior to treatment decisions.

Objectives: To evaluate the timing and content of the first serious illness communication (SI conversation) for patients with AHF after referral to a specialist palliative care (PC) team (HeartPal).

Methods: In this retrospective cohort study, we used electronic health records to identify patients referred to HeartPal and their first SI conversations at a tertiary care hospital between October 2018 and September 2021.

Differences in code status practice patterns among emergency clinicians working in Japan and the United States.

Objective: This study aimed to examine self-reported code-status practice patterns among emergency clinicians from Japan and the U.S.

Methods: A cross-sectional questionnaire was distributed to emergency clinicians from one academic medical center and four general hospitals in Japan and two academic medical centers in the U.

Assessing fairness in machine learning models: A study of racial bias using matched counterparts in mortality prediction for patients with chronic diseases.

Objective: Existing approaches to fairness evaluation often overlook systematic differences in the social determinants of health, like demographics and socioeconomics, among comparison groups, potentially leading to inaccurate or even contradictory conclusions. This study aims to evaluate racial disparities in predicting mortality among patients with chronic diseases using a fairness detection method that considers systematic differences.

Methods: We created five datasets from Mass General Brigham's electronic health records (EHR), each focusing on a different chronic condition: congestive heart failure (CHF), chronic kidney disease (CKD), chronic obstructive pulmonary disease (COPD), chronic liver disease (CLD), and dementia.

Racial and Ethnic Disparities in Serious Illness Conversation Quality during the COVID-19 Pandemic.

Context: The COVID-19 pandemic disproportionately impacted non-Hispanic Black and Hispanic patients. However, little is known about the quality of serious illness communication in these communities during this time.

Objective: We aimed to determine whether racial and ethnic disparities manifested in serious illness conversations during the pandemic.

Looking Beyond Mortality Prediction: Primary Care Physician Views of Patients' Palliative Care Needs Predicted by a Machine Learning Tool.

Objectives:  To assess primary care physicians' (PCPs) perception of the need for serious illness conversations (SIC) or other palliative care interventions in patients flagged by a machine learning tool for high 1-year mortality risk.

Methods:  We surveyed PCPs from four Brigham and Women's Hospital primary care practice sites. Multiple mortality prediction algorithms were ensembled to assess adult patients of these PCPs who were either enrolled in the hospital's integrated care management program or had one of several chronic conditions.

A Mixed Methods Analysis of Standardized Documentation of Serious Illness Conversations Within an Electronic Health Record Module During Hospitalization.

Background: Analysis of documented Serious Illness Conversations (SICs) in the inpatient setting can help clinicians align management to address patient and caregiver needs.

Methods: We conducted a mixed methods analysis of the first instance of standardized documentation of a SIC within a structured module among hospitalized general medicine patients from 2018 to 2019. Percentage of documentations that included a description of patient or family understanding of the patient's medical condition and use of radio buttons to answer the "prognostic information shared," "hopes," and "worries" modules are reported.

What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer.

Background: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population.

Quality of End-of-Life Care Among Adolescents and Young Adults With Cancer.

Adolescents, young adults with cancer receive limited psychosocial and spiritual support near death.

The differences in code status conversation approaches reported by emergency medicine and palliative care clinicians: A mixed-method study.

Background: During acute health deterioration, emergency medicine and palliative care clinicians routinely discuss code status (e.g., shared decision making about mechanical ventilation) with seriously ill patients.

Kidney Transplant Clinicians' Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study.

Rationale & Objective: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population.

Video Intervention and Goals-of-Care Documentation in Hospitalized Older Adults: The VIDEO-PCE Randomized Clinical Trial.

Importance: Despite the benefits of goals-of-care (GOC) communication, many hospitalized individuals never communicate their goals or preferences to clinicians.

Objective: To assess whether a GOC video intervention delivered by palliative care educators (PCEs) increased the rate of GOC documentation.

Design, Setting, And Participants: This pragmatic, stepped-wedge cluster randomized clinical trial included patients aged 65 years or older admitted to 1 of 14 units at 2 urban hospitals in New York and Boston from July 1, 2021, to October 31, 2022.

Discussions About Goals of Care and Advance Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life.

Purpose: Adolescents and young adults (AYAs) with cancer receive high rates of medically intensive measures at the end of life. This study aimed to characterize the prevalence and timing of conversations about goals of care and advance care planning among AYAs at the end of life as one potential influence on care received.

Methods: This was a review of electronic health data and medical records for 1,929 AYAs age 12-39 years who died after receiving care at one of three sites between 2003 and 2019, including documented conversations about goals of care and advance care planning, and care received.

Adding Pals to KidneyPal: Creating a Virtual Patient and Family Advisory Council for Kidney Palliative Care.

Patient and family advisory councils (PFACs) represent one method of engaging patients and families in clinical program development and research, but existing practices too often exclude marginalized and minority voices. As a kidney palliative care team (KidneyPal) at a large academic medical center, we sought to create a PFAC that explicitly considered equity and inclusion in its approach to advisor recruitment. We developed two major innovations to reduce selection bias in our KidneyPal PFAC: adaptation to an entirely virtual process and alteration of the advisor recruitment and enrollment process.