Care Decisions in the Hospital: Challenges for Family Members of Hospitalized Persons With Dementia.

Context: Family members of hospitalized persons living with dementia (PLWD) often face complex, high-stakes decisions and experience significant psychological distress. Prior studies of hospitalized patients have focused on the ethical, intrapersonal, and communication-related challenges specific to surrogate decision-making, but few have explored challenges specific to families of PLWD.

Objectives: To understand challenges faced by family members of hospitalized older PLWD as they navigate care decisions.

A Comparison of Palliative Care Delivery between Ethnically Chinese and Non-Chinese Canadians in the Last Year of Life.

Background: Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned.

Questions From Family Members During the Dying Process And Moral Distress Experienced by ICU Nurses.

Background: For a hospitalized patient, transitioning to comfort measures only (CMO) involves discontinuation of life-prolonging interventions with a goal of allowing natural death. Nurses play a pivotal role during the provision of CMO, caring for both the dying patient and their family.

Objective: To examine the experiences of ICU nurses caring for patients receiving CMO.

Supportive care decision-making processes of persons with dementia and their caregivers.

Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care.

Identifying research practices toward achieving health equity principles within the Cancer Prevention and Control Research Network.

Purpose: Although there is national recognition for health equity-oriented research, there is limited guidance for researchers to engage partnerships that promote health equity in cancer research. The Cancer Prevention and Control Research Network's (CPCRN) Health Equity Work Group developed a toolkit to guide researchers in equitable collaborations.

Methods: The CPCRN's Health Equity Work Group collectively outlined health and racial equity principles guiding research collaborations with partners that include communities, community-based organizations, implementing partners in the clinical setting including providers and health care organizations, and policy makers.

Association Between Primary Decision-Maker and Care Intensity Among Patients With Advanced Cancer in Mainland China.

In China, decisions regarding the treatment of seriously ill patients are usually made by family caregivers. This study aimed to explore the association between the primary decision-makers and the intensity of care given to patients with advanced cancer in China. We conducted a survey of family members and other caregivers representing 828 cancer patients who died between July 2013 and July 2016.

Racism in Palliative Care Research: We Still have a Ways to Go.

This series focuses on addressing the intersection of race and racism in palliative care through roundtable discussions with interdisciplinary clinicians, researchers, educators, and leaders in palliative care. These short discussions are intended to stimulate readers to examine issues of race and racism within the field of hospice and palliative care - in the various forms that it appears - as well as serve as a continual call to action to facilitate and promote equity.

Understanding the Role of Caseworker-Cultural Mediators in Addressing Healthcare Inequities for Patients with Limited-English Proficiency: a Qualitative Study.

Background: Patients with limited-English proficiency (LEP) face multiple barriers to equitable healthcare. Interventions that go beyond interpretation, such as the use of bicultural-bilingual patient navigators, hold promise for addressing multi-level barriers. However, data about how to operationalize the tasks that are key to such interventions across diverse LEP communities are lacking.

End-of-life healthcare utilization and palliative care use among older adults with limited English proficiency.

Background: Little is known about end-of-life healthcare utilization and palliative care use among older adults with serious illness and limited English proficiency (LEP).

Methods: We conducted a retrospective analysis of seriously-ill older adults (65+) with and without LEP, from a large health system, who died between 2010 and 2018. Primary outcomes were measures of healthcare utilization in the last 30 and 180 days of life: hospitalization, emergency department (ED) visits, intensive care unit (ICU) admission, and 30-day readmission.

Challenges and opportunities in conducting research with older adults with dementia during COVID-19 and beyond.

The coronavirus disease 19 (COVID-19) pandemic has created significant and new challenges for the conduct of clinical research involving older adults with Alzheimer's disease and related dementias (ADRD). It has also stimulated positive adaptations in methods for engaging older adults with ADRD in research, particularly through the increased availability of virtual platforms. In this paper, we describe how we adapted standard in-person participant recruitment and qualitative data collection methods for virtual use in a study of decision-making experiences in older adults with ADRD.

Characterizing uncertainty in goals-of-care discussions among black and white patients: a qualitative study.

Background: Uncertainty has been associated with distress and poorer quality of life in patients with advanced cancer. Prior studies have focused on prognostic uncertainty; little is known about other types of uncertainty that patients and family members experience when discussing goals of care. Understanding the types of uncertainty expressed and differences between Black and White patients can inform the development of uncertainty management interventions.

Recruiting older adult participants through crowdsourcing platforms: Mechanical Turk versus Prolific Academic.

Background: Recruiting older adults (OA) into research is challenging.

Objective: To assess the feasibility of using two crowdsourcing platforms, Amazon's Mechanical Turk (MTurk) and Prolific Academic (ProA), as efficient and low-cost venues for recruiting survey participants aged 65 and older.

Methods: We developed an online survey to investigate and compare the demographics, technology use, and motivations for research participation of OA on MTurk and ProA.

The Black and White of Invasive Mechanical Ventilation in Advanced Dementia.

Background/objectives: Over the past decade, feeding tube use in nursing home residents with advanced dementia has declined by 50% among white and black patients. Little is known about whether a similar reduction has occurred in other invasive interventions, such as mechanical ventilation.

Design: Retrospective cohort study.

Unplanned Admission to the ICU: A Qualitative Study Examining Family Member Experiences.

Background: Transfers to the ICU from acute care are common, and it is essential to understand how family members of critically ill patients experience these transitions of care.

Research Question: Can we enhance our understanding of family members' experiences during hospital stays complicated by a patient's unplanned admission to the ICU?

Study Design And Methods: Qualitative interviews were conducted with family members of patients were transferred from acute care to the ICU at a level I trauma center in Seattle, WA (n = 17). To organize data, we used thematic analysis, coupled with a validated conceptual model of clinician-surrogate communication.

Goals-of-Care Decisions by Hospitalized Patients With Advanced Cancer: Missed Clinician Opportunities for Facilitating Shared Decision-Making.

Context: Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood.

Objective: The objective of this study was to explore decision-making by patients and clinicians during inpatient goals-of-care discussions.

Moral Distress and Attitudes About Timing Related to Comfort Care for Hospitalized Patients: A Survey of Inpatient Providers and Nurses.

Context: Providing nonbeneficial care at the end of life and delays in initiating comfort care have been associated with provider and nurse moral distress.

Objective: Evaluate provider and nurse moral distress when using a comfort care order set and attitudes about timing of initiating comfort care for hospitalized patients.

Methods: Cross-sectional survey of providers (physicians, nurse practitioners, and physician assistants) and nurses at 2 large academic hospitals in 2015.

Quality of Communication and Trust in Patients With Serious Illness: An Exploratory Study of the Relationships of Race/Ethnicity, Socioeconomic Status, and Religiosity.

Context: Better understanding of clinicians' skill communicating with their patients and of patients' trust in clinicians is necessary to develop culturally sensitive palliative care interventions. Race/ethnicity, socioeconomic status, and religiosity have been documented as factors influencing quality of communication and trust.

Objectives: The objective of this study was to explore associations of seriously ill patients' race/ethnicity, socioeconomic status, and religiosity with patients' ratings of the quality of clinicians' communication and trust in clinicians.

Association of Racial Differences With End-of-Life Care Quality in the United States.

This cross-sectional analysis of survey data collected from 2011 to 2015 for the National Health and Aging Trends Study assesses whether racial differences in the quality of end-of-life care persist in the United States.

Spiritual Needs and Perception of Quality of Care and Satisfaction With Care in Hematology/Medical Oncology Patients: A Multicultural Assessment.

Context: Assessment and response to patients' spiritual concerns are crucial components of high-quality supportive care. Better measures of spiritual needs across the cultural spectrum may help direct necessary interventions.

Objectives: The objective of this study was to assess spiritual needs in a racially/ethnically and religiously mixed sample of hematology and oncology outpatients and examine the association between spiritual needs and perception of quality of care and satisfaction with care.

Evaluation of a Mastery Learning Intervention on Hospitalists' Code Status Discussion Skills.

Context: Although code status discussions (CSD) occur frequently in the hospital setting, discussions often lack content necessary for informed decision making. Simulation-based mastery learning (SBML) has been used to improve clinical skills among resident physicians and may provide a novel way to improve hospitalists' CSD skills.

Objectives: The objective of this pilot randomized controlled trial was to develop and evaluate a CSD SBML intervention for hospitalists.

Patients' and healthcare providers' perceptions of a mobile portal application for hospitalized patients.

Background: Hospital-based patient portals have the potential to better inform and engage patients in their care. We sought to assess patients' and healthcare providers' perceptions of a hospital-based portal and identify opportunities for design enhancements.

Methods: We developed a mobile patient portal application including information about the care team, scheduled tests and procedures, and a list of active medications.

Racial/Ethnic Differences in Inpatient Palliative Care Consultation for Patients With Advanced Cancer.

Purpose: Inpatient palliative care consultation (IPCC) may help address barriers that limit the use of hospice and the receipt of symptom-focused care for racial/ethnic minorities, yet little is known about disparities in the rates of IPCC. We evaluated the association between race/ethnicity and rates of IPCC for patients with advanced cancer.

Patients And Methods: Patients with metastatic cancer who were hospitalized between January 1, 2009, and December 31, 2010, at an urban academic medical center participated in the study.

Male-female patient differences in the association between end-of-life discussions and receipt of intensive care near death.

Background: Patient gender plays a significant role in patient-physician communication, patients' understanding of illness, and the aggressiveness of end-of-life (EoL) care. However, little is known about the extent to which gender differences in the effects of EoL discussions on EoL care contribute to gender differences in EoL care. The current study was aimed at determining whether gender differences exist in the receipt of intensive care unit (ICU) care near death and in the association between EoL discussions and the receipt of EoL ICU care.