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. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life. OBJECTIVE: To compare the use and delivery of PC in the last year of life between ethnically Chinese and non-Chinese adults. DESIGN: Population-based cohort study. PARTICIPANTS: All Ontario adults who died between January 1st, 2012, and October 31st, 2022, in Ontario, Canada. EXPOSURES: Chinese ethnicity. MAIN MEASURES: Elements of physician-delivered PC, including model of care (generalist; specialist; mixed), timing and location of initiation, and type of palliative care physician at initial consultation. KEY RESULTS: The final study cohort included 527,700 non-Chinese (50.8% female, 77.9 ± 13.0 mean age, 13.0% rural residence) and 13,587 ethnically Chinese (50.8% female, 79.2 ± 13.6 mean age, 0.6% rural residence) adults. Chinese ethnicity was associated with higher likelihoods of using specialist (adjusted odds ratio [aOR] 1.53, 95%CI 1.46-1.60) and mixed (aOR 1.32, 95%CI 1.26-1.38) over generalist models of PC, compared to non-Chinese patients. Chinese ethnicity was also associated with a higher likelihood of PC initiation in the last 30 days of life (aOR 1.07, 95%CI 1.03-1.11), in the hospital setting (aOR 1.24, 95%CI 1.18-1.30), and by specialist PC physicians (aOR 1.33, 95%CI 1.28-1.38). CONCLUSIONS: Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness.

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. Using a network-wide survey to crowdsource information around ongoing practices, we leveraged and integrated the network's experience and collaborations. RESULTS: Data from the survey formed the preliminary basis for the toolkit, with a focus on sharing fiscal resources with partners, training and capacity building, collaborative decision-making, community-driven research agenda setting, and sustainability. The final toolkit provides reflection considerations for researchers and collated exemplary resources, supported by the contemporary research. CONCLUSIONS: The toolkit provides a guide to researchers at all experience levels wanting to engage in equitable research collaborations. Future efforts are underway to evaluate whether and how researchers within and outside CPCRN are able to incorporate these principles in research collaborations.

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. OBJECTIVE: Using our health system's bicultural-bilingual caseworker-cultural mediator (CCM) program serving Amharic-, Cambodian/Khmer-, Somali-, Spanish-, and Vietnamese-speaking patients, we sought to understand the key tasks that comprise the CCMs' role and how these tasks enable them to address barriers to healthcare for patients with LEP. DESIGN: Semi-structured interviews were conducted in 2019 with a purposive sample (n=23) of clinicians, CCMs, and patients with LEP or their family members from all language groups. PARTICIPANTS: Patients or family members receiving CCM services, CCMs, and clinicians who referred patients to the program. APPROACH: Content analysis consisting of a hybrid deductive-inductive qualitative approach. KEY RESULTS: Seven CCM tasks were identified: advocacy, care coordination, navigation, interpretation, education, mediation, and emotional support. Additionally, four key impacts emerged that described the ways in which these tasks enabled the CCMs to facilitate equitable care: bridging the patient, family, community, clinical team, and healthcare system; impacting knowledge of cultural issues and of the healthcare system; troubleshooting cultural barriers and problem solving; and enhancing relationship building. CONCLUSIONS: We identified several tasks and impacts that enabled CCMs to address multi-level barriers to care experienced by patients with LEP and their families across diverse cultural and linguistic groups. Findings suggest opportunities for the generalizability of programs such as ours for multiple LEP populations. Additionally, interventions having a greater scope than interpretation and including relationships with communities may be more successful in addressing barriers to equitable care at the individual, system, and community levels.

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. METHODS: This study sought to characterize the types of uncertainty expressed by Black and White patients and family members within the context of information needs during inpatient goals-of-care discussions. We performed a secondary analysis of transcripts from 62 recorded goals-of-care discussions that occurred between 2012 and 2014 at an urban, academic medical center in the United States. We applied an adapted taxonomy of uncertainty to data coded as describing information needs and used an inductive qualitative analysis method to analyze the discussions. We report the types of uncertainty expressed in these discussions. RESULTS: Fifty discussions included patient or family expressions of information needs. Of these, 40 discussions (n=16 Black and n=24 White) included statements of uncertainty. Black and White patients and families most frequently expressed uncertainty related to processes and structures of care (system-centered uncertainty) and to treatment (scientific uncertainty). Statements of prognostic uncertainty focused on quantitative information among Whites and on qualitative information and expectations for the future among Blacks. CONCLUSIONS: Black and White patients and families frequently expressed system-centered uncertainty, suggesting this may be an important target for intervention. Addressing other sources of uncertainty, such as prognostic uncertainty, may need more tailored approaches.

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. Patients were offered use of tablet computers, with the portal application, during their hospitalization. We conducted semi-structured interviews of patients and provider focus groups. Text from transcribed interviews and focus groups was independently coded by two investigators using a constant comparative approach. Codes were reviewed by a third investigator and discrepancies resolved via consensus. RESULTS: Overall, 18 patients completed semi-structured interviews and 21 providers participated in three focus groups. Patients found information provided by the portal to be useful, especially regarding team members and medications. Many patients described frequent use of games and non-clinical applications and felt the tablet helped them cope with their acute illness. Patients expressed a desire for additional detail about medications, test results, and the ability to record questions. Providers felt the portal improved patient engagement, but worried that additional features might result in a volume and complexity of information that could be overwhelming for patients. Providers also expressed concern over an enhanced portal's impact on patient-provider communication and workflow. CONCLUSIONS: Optimizing a hospital-based patient portal will require attention to type, timing and format of information provided, as well as the impact on patient-provider communication and workflow.

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. METHODS: This was a multisite, prospective cohort study of patients (n = 353) with metastatic cancers who were identified as terminally ill at study enrollment and were interviewed at a median of 4.1 months before their deaths. Postmortem chart reviews and caregiver interviews documented ICU stays in the last week of life. RESULTS: Patients who received ICU care at the EoL were more likely to be male than those who did not (73% vs 52%, P = .02). After adjustments for potential confounders, male patients reporting an EoL discussion were less likely to have an ICU stay in the last week of life than male patients with no EoL discussion (adjusted odds ratio, 0.26, 95% confidence interval, 0.07-0.91; P = .04). There was no association between EoL discussions and ICU stays near death among female patients. CONCLUSIONS: Men with advanced cancers are more likely than women to receive aggressive, nonbeneficial ICU care near death. Gender differences in the effects of EoL discussions on EoL care likely contribute to and may even explain gender differences in the receipt of ICU care in the last week of life.

Unpacking resident-led code status discussions: results from a mixed methods study.

BACKGROUND: The quality of code status discussions (CSDs) is suboptimal as physicians often fail to discuss patients' goals of care and resuscitation outcomes. We previously demonstrated that internal medicine residents randomized to a communication skills intervention scored higher than controls on a CSD checklist using a standardized patient. However, the impact of this training on CSD content is unknown. OBJECTIVE: Compare CSD content between intervention and control residents. DESIGN: We conducted qualitative analysis of simulated CSDs. Augmenting a priori codes with constant comparative analysis, we identified key themes associated with resident determination of code status. We dichotomized each theme as present or absent. We used chi-square tests to evaluate the association between training and presence of each theme. PARTICIPANTS: Fifty-six residents rotating on the internal medicine service in July 2010 were randomized to intervention (n = 25) or control (n = 31). INTERVENTION: Intervention residents completed CSD skills training (lectures, deliberate practice, and self-study). Six months later, all 56 residents completed a simulated CSD. MAIN MEASURE: Comparison of key themes identified in CSDs among intervention and controls. KEY RESULTS: Fifty-one transcripts were recorded and reviewed. Themes identified included: exploration of patient values/goals, framing code status as a patient decision, discussion of resuscitation outcomes and quality of life, and making a recommendation regarding code status. Intervention residents were more likely than controls to explore patient values/goals (p = 0.002) and make a recommendation (p < 0.001); and less likely to frame the decision as one solely to be made by the patient (p = 0.01). Less than one-third of residents discussed resuscitation outcomes or quality of life. CONCLUSION: Training positively influenced CSD content in key domains, including exploration of patient values/goals, making a recommendation regarding code status, and not framing code status as solely a patient decision. However, despite the intervention, residents infrequently discussed resuscitation outcomes and quality of life.

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. METHODS: Between October 2020 and June 2021, nurses in the neuro- and medical-cardiac intensive care units at Harborview Medical Center in Seattle, WA, completed surveys about their experiences providing CMO. Surveys addressed involvement in discussions about CMO and questions asked by family members of dying patients. We also assessed nurses' moral distress related to CMO and used ordinal logistic regression to examine predictors of moral distress. RESULTS: Surveys were completed by 82 nurses (response rate 44%), with 79 (96%) reporting experience providing CMO in the previous year. Most preferred to be present for discussions between physicians or advanced practice providers and family members about transitioning to CMO (89% most of the time or always); however, only 31% were present most of the time or always. Questions from family about time to death, changes in breathing, and medications to relieve symptoms were common. Most nurses reported moral distress at least some of the time when providing CMO (62%). Feeling well-prepared to answer specific questions from family was associated with less moral distress. CONCLUSION: There is discordance between nurses' preferences for inclusion in discussions about the transition to CMO and their actual presence. Moral distress is common for nurses when providing CMO and feeling prepared to answer questions from family members may attenuate distress.

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.

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. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.

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

Purpose: 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. Methods: We conducted a survey of family members and other caregivers representing 828 cancer patients who died between July 2013 and July 2016. The survey asked: "After the physician conveyed that the disease is incurable, what treatment did the patient and caregiver prefer?" and "Who was the primary decision-maker?" We compared the treatment intensity with locus of decision-making using multivariable logistic regression, adjusting for socio-demographic and clinical covariates informed. Results: Of the 792 patients in our sample, the majority were male (67·2%), 60 years or older (64·0%), married (82·2%), lived with family (98·2%), had medical insurance (94·8%), earned below-average income (53·5%), lived rurally (61·5%), had a gastrointestinal cancer diagnosis (50·8%), experienced moderate or severe pain (86·3%), never received palliative care (80·4%) and had caregivers as primary decision-makers (70·6%). We found that patients were more likely to receive intensive disease-modifying treatments when the primary decision-maker were their children (adjusted odds ratio [AOR] = 1·86, 95% CI:1·26-2·74), spouse (AOR = 2·04, 95% CI:1·26-3·30), or other caregivers (AOR = 3·46, 95% CI:1·24-9·69). Conclusions: When patients with advanced cancer in China did not make their own medical decisions, they were more likely to receive intensive disease-modifying treatments at the end-of-life. Actions should be taken to better understand and ensure that caregivers' decisions reflect the values and presence of patients.

Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care.

BACKGROUND: Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US. OBJECTIVE: To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care. DESIGN: Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life. PARTICIPANTS: Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region. APPROACH: Content analysis of focus group transcripts. RESULTS: First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities. CONCLUSIONS: Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for information disclosure and decision making.

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. Secondary outcomes were palliative care consultation and advance care planning documents. We used multivariate analyses adjusted for sociodemographic factors including race and ethnicity. RESULTS: Among 18,490 decedents, 1363 had LEP. Patients with LEP were older at time of death (median age 80 vs 77 years), more likely to be female (48% vs 44%), of Asian descent (64% vs 4%), of Hispanic ethnicity (10% vs 2%), with <12th grade education (38% vs 9%), and Medicaid (36% vs 6%). In the last 30 days of life, patients with LEP had higher odds of ED visits (33% vs 20%; aOR 1.41, 95% CI 1.26-1.72; p < 0.001), readmission (12% vs 8%; aOR 1.64, 95% CI 1.30-2.07; p < 0.001), and in-hospital death (45% vs 37%; aOR 1.24, 95% CI 1.07-1.44; p = 0.005) compared to patients without LEP. Findings were similar in the last 180-days of life. Only 14% of patients with LEP and 10% of those without LEP received palliative care consultation in the last month of life. Patients with LEP were less likely to have advance care planning documents than patients without LEP (36% vs 40%; aOR 0.68, 95% CI 0.50-0.80; p < 0.001). CONCLUSIONS: Older adults with serious illness and LEP have higher rates of end-of-life healthcare utilization. Additional research is needed to identify drivers of these differences and inform linguistically- and culturally-appropriate interventions to improve end-of-life care in this population.

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. We describe key considerations for the use of technology and virtual platforms and discuss our experience with using recommended strategies to recruit a diverse sample of older adults. We highlight the need for research funding that supports the community-based organizations on which improving equity in ADRD research participation often depends.

Family understanding of seriously-ill patient preferences for family involvement in healthcare decision making.

BACKGROUND: Surrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf. OBJECTIVE: To evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making. DESIGN: Cross-sectional survey. PARTICIPANTS: Twenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total). MAIN MEASURES: Patients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios. KEY RESULTS: Patient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54). CONCLUSION: Family members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.

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. Qualitative responses, response time, word count, and recruitment costs were analyzed. RESULTS: We recruited 97 OA survey participants on both MTurk and ProA. Participants were similar in terms ofdemographics, technology usage, and motivations for participation (topic interest and payment). CONCLUSION: Both crowdsourcing platforms are useful for rapid and low-cost recruitment of OA. The OA recruitment process was more efficient with ProA. Crowdsourcing platforms are potential sources of OA research participants; however, the pool is limited to generally healthy, technologically active, and well-educated older adults.

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. RESULTS: Drawing from a validated conceptual model, we used two domains to frame our coding: "information processing" and "relationship building." Within information processing, we coded information disclosure, sensemaking, and expectations; within relationship building, we coded emotional support, trust, and consensus and conflict. Family members wanted timely, accurate information about the patient's condition both during and after transfer. An unplanned ICU admission was a stressful event for family members, who looked to clinicians for emotional support. Developing trust was challenging, because family members struggled to feel like integrated members of the medical team when patients transitioned from one setting to another. INTERPRETATION: Family of patients who experience an unplanned ICU admission want high-quality communication both during and after a patient's transfer to the ICU. This communication should help family members make sense of the situation, address unmet expectations, and provide emotional support. In addition, interventions that foster family-clinician trust can help family members feel like integrated members of the care team as they face the challenge of navigating multiple different environments within the hospital.

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. SETTING: Acute-care hospitals in the United States. PARTICIPANTS: Medicare beneficiaries with advanced dementia who previously resided in a nursing home and were hospitalized between 2001 and 2014 with pneumonia and/or septicemia and of either black or white race. MEASUREMENT: Invasive mechanical ventilation (IMV), as identified by International Classification of Diseases (ICD) procedure codes. Two multivariable logistic regression models examined the association between race and the likelihood of receiving IMV, adjusting for patients' demographics, physical function, and comorbidities. A hospital fixed-effects model examined the association of race within a hospital, whereas a random-effects logistic model was used to estimate the between-hospital variation in the probability of receiving IMV and examine the overall association of race and use of IMV. RESULTS: Between 2001 and 2014, 289,017 patients with advanced dementia were hospitalized for pneumonia or septicemia. Use of IMV increased from 3.7% to 12.1% in white patients and from 8.6% to 21.8% in blacks. Among those ventilated, 1-year mortality rates remained high, at 82.7% for whites and 84.2% for blacks dying in 2013. Compared with whites, blacks had a higher odds of receiving IMV in the fixed-effects (within-hospital) model (adjusted odds ratio (AOR) = 1.34; 95% confidence interval (CI) = 1.29-1.39) and in the random-effects (between-hospital) model (AOR = 1.46; 95% CI = 1.40-1.51). CONCLUSION: IMV use in patients with advanced dementia has increased substantially, with black patients having a larger increase than whites, based, in part, on the hospitals where black patients receive care.

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. Providers and nurses were surveyed about their experiences providing comfort care in an inpatient setting. RESULTS: Two hundred five nurse and 124 provider surveys were analyzed. A greater proportion of nurses compared to providers reported experiencing moral distress "some, most, or all of the time" when using the comfort care order set (40.5% and 19.4%, respectively, P = .002). Over 60% of nurses and providers reported comfort care was generally started too late in a patient's course, with physician trainees (81.4%), as well as providers (80.9%) and nurses (84.0%) < 5 years from graduating professional school most likely to report that comfort care is generally started too late. CONCLUSIONS: The majority of providers and nurses reported that comfort care was started too late in a patient's course. Nurses experienced higher levels of moral distress than providers when caring for patients using a comfort care order set. Further research is needed to determine what is driving this moral distress in order to tailor interventions for nurses and providers.

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. METHODS: This is a qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts. RESULTS: Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n = 30) were female and their mean age was 60.1 years (SD = 12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments; 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. By contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions. CONCLUSION: Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty.