"I was not able to keep myself away from tending to her immediate needs": Primary Care Physicians' Perspectives of Serious Illness Conversations at Community Health Centers.

PURPOSE: Seriously ill patients in low-income and minority populations have lower rates of advance care planning. Initiatives that promote serious illness (SI) conversations in community health centers (CHCs) can reach broad, diverse patient populations. This qualitative study explored the experiences of primary care physicians in conducting SI conversations at CHCs in order to understand challenges and needs in this setting. METHODS: An initiative to increase SI conversations was implemented at two CHCs in the Bronx, NY. Eleven participating family physicians who together conducted 37 SI conversations underwent semi-structured in-depth interviews. The 11 interviews were analyzed using inductive thematic analysis. RESULTS: Eight themes emerged: (1) Structured approaches to SI conversations are useful even in longstanding patient-doctor relationships; (2) Discussion of prognosis is meaningful but difficult; (3) Emotional work is humanizing but draining; (4) Poverty and underinsurance are high priorities; (5) Social context affects patient readiness; (6) Communication barriers take multiple forms; (7) Patient characteristics make it "easier" or "harder" to initiate the SI conversation; (8) Time constraints limit the ability to meet multiple patient needs. CONCLUSIONS: Physicians at CHCs identified challenges in SI conversations at personal, interpersonal, organizational, and societal levels. These challenges should be addressed by initiatives that aim to increase SI conversations in primary care, and especially at CHCs.

Bridging gaps in oral health education in a medical school in the United States: a pilot study.

BACKGROUND: Oral health is an important component of medical education given its connection to overall health and quality of life; however, oral health is infrequently incorporated into medical school curricula in the United States. The aim of this study was to pilot a novel oral health care clerkship for United States medical students that implemented the Smiles for Life (SFL) curriculum, in-person clinical activities, and pre and post curricula assessments to assess knowledge acquisition, attitude change, and clinical skill development. METHODS: Third year medical students at Albert Einstein College of Medicine, Bronx, New York, volunteered (n = 37) for a clerkship in oral health. Students completed the Smiles For Life National Oral Health Curriculum and participated in three half-day clinical sessions in a hospital-based dental clinic. The participants were evaluated on knowledge acquisition, attitude change, and clinical skill development through a pre and post clerkship assessment in order to assess the efficacy of the intervention. RESULTS: There was a 23.4% increase in oral health knowledge (p < 0.001) following participation in the online modules and clerkship. Additionally, attitudes in the following domains showed improved familiarity and proficiency: causes and prevention of dental caries (78.4%, p < 0.001) and periodontal disease (83.8%, p < 0.001), provision of oral health information to patients (67.6%, p < 0.001), and ability to conduct an oral examination (62.2%, p < 0.001). CONCLUSIONS: Third year medical students who participated in a novel oral health clerkship demonstrated significant increases in basic oral health knowledge and reported increased comfort in providing oral examinations and anticipatory guidance to patients. The results support the feasibility of this approach to incorporating oral health education into a medical school curriculum in the United States.

Individual vs. Group Delivery of Acupuncture Therapy for Chronic Musculoskeletal Pain in Urban Primary Care-a Randomized Trial.

BACKGROUND: Acupuncture has been shown to be effective for the treatment of chronic musculoskeletal back, neck, and osteoarthritis pain. However, access to acupuncture treatment has been limited in medically underserved and low-income populations. OBJECTIVE: Acupuncture therapy delivered in groups could reduce cost and expand access. We compared the effectiveness of group versus individual acupuncture for pain and function among ethnically diverse, low-income primary care patients with chronic musculoskeletal pain. DESIGN: This was a randomized comparative effectiveness non-inferiority trial in 6 Bronx primary care community health centers. Participants with chronic (> 3 months) back, neck, or osteoarthritis pain were randomly assigned to individual or group acupuncture therapy for 12 weeks. PARTICIPANTS: Seven hundred seventy-nine participants were randomized. Mean age was 54.8 years. 35.3% of participants identified as black and 56.9% identified as Latino. Seventy-six percent were Medicaid insured, 60% reported poor/fair health, and 37% were unable to work due to disability. INTERVENTIONS: Participants received weekly acupuncture treatment in either group or individual setting for 12 weeks. MAIN MEASURES: Primary outcome was pain interference on the Brief Pain Inventory at 12 weeks; secondary outcomes were pain severity (BPI), physical and mental well-being (PROMIS-10), and opiate use. Outcome measures were collected at baseline, 12 and 24 weeks. KEY RESULTS: 37.5% of individual arm and 30.3% in group had > 30% improvement in pain interference (d = 7.2%, 95% CI - 0.6%, 15.1%). Non-inferiority of group acupuncture was not demonstrated for the primary outcome assuming a margin of 10%. In the responder analysis of physical well-being, 63.1% of individual participants and 59.5% of group had clinically important improvement at 12 weeks (d = 3.6%, 95% CI - 4.2%, 11.4%). CONCLUSIONS: Both individual and group acupuncture therapy delivered in primary care settings reduced chronic pain and improved physical function at 12 weeks; non-inferiority of group was not shown. TRIAL REGISTRATION: Clinicaltrials.gov # NCT02456727.

COVID in NYC: What We Could Do Better.

New York City hospitals expanded resources to an unprecedented extent in response to the COVID pandemic. Thousands of beds, ICU beds, staff members, and ventilators were rapidly incorporated into hospital systems. Nonetheless, this historic public health disaster still created scarcities and the need for formal crisis standards of care. These were not available to NY clinicians because of the state's failure to implement, with or without revision, long-standing guidance documents intended for just such a pandemic. The authors argue that public health plans for disasters should be well-funded and based on available research and expertise. Communities should insist that political representatives demonstrate responsible leadership by implementing and updating as needed, crisis standards of care. Finally, surge requirements should address the needs of both those expected to survive and those who will not, by expanding palliative care and other resources for the dying.

Relationship Between Opioid Analgesic Prescription and Unemployment in Patients Seeking Acupuncture for Chronic Pain in Urban Primary Care.

OBJECTIVE: The widespread use of opioid analgesics to treat chronic nonmalignant pain has contributed to the ongoing epidemic of opioid-related morbidity and mortality. Previous studies have also demonstrated a relationship between opioid analgesic use and unemployment due to disability. These studies have been limited to mainly white European and North American populations. The objective of this study is to explore the relationship between opioid analgesic use for chronic nonmalignant pain in an urban, mainly black and Hispanic, low-income population. DESIGN: This is a cross-sectional observational study. SETTING: Subjects were recruited from six urban primary care health centers. SUBJECTS: Adults with chronic neck, back, or osteoarthritis pain participating in an acupuncture trial were included. METHODS: Survey data were collected as a part of the Acupuncture Approaches to Decrease Disparities in Pain Treatment two-arm (AADDOPT-2) comparative effectiveness trial. Participants completed a baseline survey including employment status, opioid analgesic use, the Brief Pain Inventory, the global Patient Reported Outcomes Measurement Information Systems quality of life measure, the Patient Health Questionnaire-9 (PHQ-9), and demographic information. A multivariable logistic regression model was built to examine the association between opioid analgesic use and unemployment. RESULTS: Opioid analgesic use was associated with three times the odds of unemployment due to disability while controlling for potential confounders, including depression, pain severity, pain interference, global physical and mental functioning, and demographic characteristics. CONCLUSIONS: This study adds to the growing body of evidence that opioid analgesics should be used with caution in chronic nonmalignant pain.

Decisional Control Preferences in the Hispanic Population in the Bronx.

Hispanic Americans are among the fastest growing minority groups in the USA, and understanding their preferences for medical decision-making and information sharing is imperative to provide high quality end of life care. Studies exploring these decision control preferences (DCPs) are limited and found inconsistent results. (1) To measure DCPs of Hispanic patients in the Bronx. (2) To measure disclosure of information preferences of Hispanic patients in the Bronx. This is a cross-sectional survey. One hundred nineteen cancer patients who self-identified as Hispanic and were waiting at the oncology clinic at Montefiore Medical Center Cancer Center. Proportions of patients endorsing DCPs and disclosure of information preferences are reported. The relationship between patient characteristics and DCPs was tested using chi-squared tests of homogeneity. The majority (63, 52.9%) preferred shared decision-making with their doctors, families or both, while 46 (38.7%) had an active decision-making style. A minority (9, 7.6%) had a passive decision-making style, deferring to their families, and only 1 (0.8%) deferring to the physician. No demographic characteristics significantly predicted DCPs. The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis (94%), treatment options (94%), treatment expectations (92%), and treatment risks and benefits (96%). These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis, and plan.

Are Safety-Net Primary Care Physicians Prepared to Engage in Serious Illness Conversations?

BACKGROUND: Advance Care Planning (ACP) has not reliably improved care for patients at end-of-life. Serious Illness Conversations when patients are in the late stages of chronic illness might be more effective to address patients' goals. The Serious Illness Conversation (SIC) Guide has been helpful but was not developed for use in safety-net settings serving racial and ethnic minority populations. METHODS: Physicians were recruited to complete a needs assessment survey prior to training in the use of the SIC Guide. RESULTS: Of the 44 physician participants, most were female (82%) and white, non-Hispanic (62%). Less than half of respondents rated themselves as skilled or very skilled in basic serious illness communication related tasks such as setting up goals of care discussions (44%), assessing informational preferences (42%), sharing prognosis (38%), exploring goals for future care (49%) and managing family dynamics (44%). Respondents reported lower skill levels in conducting goals of care conversations via telehealth and establishing trust in racially discordant provider/patient pairs. CONCLUSIONS: Most participants expressed the need for further training in critical end-of-life communications skills, including help with encounters with racial and/or language discordance. This may help to explain the failure of ACP discussions to reliably result in appropriate end-of-life care.

Respecting Faith, Hope, and Miracles in African American Christian Patients at End-of-Life: Moving from Labeling Goals of Care as "Aggressive" to Providing Equitable Goal-Concordant Care.

In this article, we demonstrate first how the term "aggressive care," used loosely by clinicians to denote care that can negatively impact quality of life in serious illness, is often used to inappropriately label the preferences of African American patients, and discounts, discredits, and dismisses the deeply held beliefs of African American Christians. This form of biased communication results in a higher proportion of African Americans than whites receiving care that is non-goal-concordant and contributes to the prevailing lack of trust the African American community has in our healthcare system. Second, we invite clinicians and health care centers to make the perspectives of socially marginalized groups (in this case, African American Christians) the central axis around which we find solutions to this problem. Based on this, we provide insight and understanding to clinicians caring for seriously ill African American Christian patients by sharing their beliefs, origins, and substantive importance to the African American Christian community. Third, we provide recommendations to clinicians and healthcare systems that will result in African Americans, regardless of religious affiliation, receiving equitable levels of goal-concordant care if implemented. KEY MESSAGE: Labeling care at end-of-life as "aggressive" discounts the deeply held beliefs of African American Christians. By focusing on the perspectives of this group clinicians will understand the importance of respecting their religious values. The focus on providing equitable goal-concordant care is the goal.

'The burden of wanting to make it right': thematic analysis of semistructured interviews to explore experiences of planning for crisis standards of care and ventilator allocation during the COVID-19 pandemic in the USA.

OBJECTIVES: The COVID-19 pandemic prompted planning for clinical surges and associated resource shortages, particularly of equipment such as ventilators. We sought to examine the experience of the healthcare professionals who created policies for crisis standards of care, and allocation of ventilators in the event of shortage. DESIGN: To that end, we conducted semistructured interviews with healthcare professionals in the USA involved in institutional planning for resource shortages in the setting of the COVID-19 pandemic. SETTING: USA. PARTICIPANTS: We conducted 25 interviews between May and July 2021. Half of the respondents were female (48%), many from Northeastern institutions (52%), and most practised in academic institutions (92%). RESULTS: Many (64%) respondents reported that their institution had an approved policy to guide ventilator allocation in the event of a shortage. We identified one overarching theme: the work of planning for resource shortages imposed a psychological burden on many planners. We identified four subthemes that influenced that burden: impact of leadership, institutional variation in process and policies, faith in the policies and future directions. CONCLUSIONS: Improved leadership strategies and cross-institutional collaboration can reduce the psychological burden of planning and facilitate updating plans in anticipation of future shortages.

"Postponing it Any Later Would not be so Great": A Cognitive Interview Study of How Physicians Decide to Initiate Goals of Care Discussions in the Hospital.

BACKGROUND: There are missed opportunities to discuss goals and preferences for care with seriously ill patients in the acute care setting. It is unknown which factors most influence clinician decision-making about communication at the point of care. OBJECTIVE: This study utilized a cognitive-interviewing technique to better understand what leads clinicians to decide to have a goals of care (GOC) discussion in the acute care setting. METHODS: A convenience sample of 15 oncologists, intensivists and hospitalists were recruited from a single academic medical center in a large urban area. Participants completed a cognitive interview describing their thought process when deciding whether to engage in GOC discussions in clinical vignettes. RESULTS: 6 interconnected factors emerged as important in determining how likely the physician was to consider engaging in GOC at that time; (1) the participants' mental model of GOC, (2) timing of GOC related to stability, acuity and reversibility of the patient's condition, (3) clinical factors such as uncertainty, prognosis and recency of diagnosis, (4) patient factors including age and emotional state, (5) participants' role on the care team, and (6) clinician factors such as emotion and communication skill level. CONCLUSION: Participants were hesitant to commit to the present moment as the right time for GOC discussions based on variations in clinical presentation. Clinical decision support systems that include more targeted information about risk of clinical deterioration and likelihood of reversal of the acute condition may prompt physicians to discuss GOC, but more support for managing discomfort with uncertainty is also needed.

Primary and Specialist-Level Palliative Care during the spring 2020 COVID-19 Surge: A Single-Center Experience in the Bronx.

INTRODUCTION: The COVID-19 pandemic surge necessitated a rapid increase in provision of goals of care communication for patients with respiratory failure and high risk of death. We aimed to describe the outcomes and incidence of code status changes for mechanically ventilated patients in an acute care hospital after deploying strategies to enhance primary palliative care, including provision of goals of care communication scripts to front-line physicians. METHODS: This is a retrospective cohort study including all patients admitted with COVID-19 disease and requiring mechanical ventilation during a 2-week period in March and April of 2020. RESULTS: Of the 440 total patients, 327 (74.3%) died. 162 patients received a documented attempt at cardiopulmonary resuscitation (CPR) and only 4 (2.5%) of them survived. No patient above the age of 64 survived a CPR attempt. On admission, 404 patients (92.8%) were Full Code. 165 patients (37.5%) had a code status change. Almost half of the patients (n = 219) had a palliative care consult. Patients with a palliative care consult were more likely to have a code status change (56.6% v. 18.6%, χ2 = 68.0, p < 0.01). DISCUSSION: Mechanically ventilated patients had a high mortality, and CPR did not result in survival to discharge in patients over 65. Palliative care specialists are needed to guide goals of care discussions during the COVID-19 pandemic, as there are numerous barriers to equipping primary care teams to lead such discussions. The COVID-19 pandemic has underscored the vital role of palliative care in disaster response.

A Decade of Studying Drivers of Disparities in End-of-Life Care for Black Americans: Using the NIMHD Framework for Health Disparities Research to Map the Path Ahead.

OBJECTIVE: The purpose of this paper is to provide a review of the existing literature on racial disparities in quality of palliative and end-of-life care and to demonstrate gaps in the exploration of underlying mechanisms that produce these disparities. BACKGROUND: Countless studies over several decades have revealed that our healthcare system in the United States consistently produces poorer quality end-of-life care for Black compared with White patients. Effective interventions to reduce these disparities are sparse and hindered by a limited understanding of the root causes of these disparities. METHODS: We searched PubMed, CINAHL and PsychInfo for research manuscripts that tested hypotheses about causal mechanisms for disparities in end-of-life care for Black patients. These studies were categorized by domains outlined in the National Institute of Minority Health and Health Disparities (NIMHD) framework, which are biological, behavioral, physical/built environment, sociocultural and health care systems domains. Within these domains, studies were further categorized as focusing on the individual, interpersonal, community or societal level of influence. RESULTS: The majority of the studies focused on the Healthcare System and Sociocultural domains. Within the Health Care System domain, studies were evenly distributed among the individual, interpersonal, and community level of influence, but less attention was paid to the societal level of influence. In the Sociocultural domain, most studies focused on the individual level of influence. Those focusing on the individual level of influence tended to be of poorer quality. CONCLUSIONS: The sociocultural environment, physical/built environment, behavioral and biological domains remain understudied areas of potential causal mechanisms for racial disparities in end-of-life care. In the Healthcare System domain, social influences including healthcare policy and law are understudied. In the sociocultural domain, the majority of the studies still focused on the individual level of influence, missing key areas of research in interpersonal discrimination and local and societal structural discrimination. Studies that focus on individual factors should be better screened to ensure that they are of high quality and avoid stigmatizing Black communities.

Quantifying Utilitarian Outcomes to Inform Triage Ethics: Simulated Performance of a Ventilator Triage Protocol under Sars-CoV-2 Pandemic Surge Conditions.

BACKGROUND: Equitable protocols to triage life-saving resources must be specified prior to shortages in order to promote transparency, trust and consistency. How well proposed utilitarian protocols perform to maximize lives saved is unknown. We aimed to estimate the survival rates that would be associated with implementation of the New York State 2015 guidelines for ventilator triage, and to compare them to a first-come-first-served triage method. METHODS: We constructed a simulation model based on a modified version of the New York State 2015 guidelines compared to a first-come-first-served method under various hypothetical ventilator shortages. We included patients with SARs-CoV-2 infection admitted with respiratory failure requiring mechanical ventilation to three acute care hospitals in New York from 3/01/2020 and 5/27/2020. We estimated (1) survival rates, (2) number of excess deaths, (3) number of patients extubated early or not allocated a ventilator due to capacity constraints, (4) survival rates among patients not allocated a ventilator at triage or extubated early due to capacity constraints. RESULTS: 807 patients were included in the study. The simulation model based on a modified New York State policy did not decrease mortality, excess death or exclusion from ventilators compared to the first-come-first-served policy at every ventilator capacity we tested using COVID-19 surge cohort patients. Survival rates were similar at all the survival probabilities estimated. At the lowest ventilator capacity, the modified New York State policy has an estimated survival of 28.5% (CI: 28.4-28.6), compared to 28.1% (CI: 27.7-28.5) for the first-come-first-served policy. CONCLUSIONS: This simulation of a modified New York State guideline-based triage protocol revealed limitations in achieving the utilitarian goals these protocols are designed to fulfill. Quantifying these outcomes can inform a better balance among competing moral aims.

Modeling Outcomes Using Sequential Organ Failure Assessment (SOFA) Score-Based Ventilator Triage Guidelines During the COVID-19 Pandemic.

OBJECTIVE: To model performance of the Sequential Organ Failure Assessment (SOFA) score-based ventilator allocation guidelines during the COVID-19 pandemic. METHODS: A retrospective cohort study design was used. Study sites included 3 New York City hospitals in a single academic medical center. We included a random sample (205) of adult patients who were intubated (1002) from March 25, 2020, till April 29, 2020. Protocol criteria adapted from the New York State's 2015 guidelines were applied to determine which patients would have had mechanical ventilation withheld or withdrawn. RESULTS: 117 (57%) patients would have been identified for ventilator withdrawal or withholding based on the triage guidelines. Of those 117 patients, 28 (24%) survived hospitalization. Overall, 65 (32%) patients survived to discharge. CONCLUSION: Triage protocols aim to maximize survival by redirecting ventilators to those most likely to survive. Over 50% of this sample would have been identified as candidates for ventilator exclusion. Clinical judgment would therefore still be needed in ventilator reallocation, thus re-introducing bias and moral distress. This data suggests limited utility for SOFA score-based ventilator rationing. It raises the question of whether there is sufficient ethical justification to impose a life-ending decision based on a SOFA scoring method on some patients in order to offer potential benefit to a modest number of others.

Protecting our Elders and Developing Equitable Policies During Public Health Emergencies: Ethical Recommendations.

Purpose of the Review: Experiences of patients, families, healthcare workers and health systems during the COVID-19 pandemic and recent national focus on racial justice have forced a reconsideration of policies and processes of providing care in crisis situations when resources are scarce. The purpose of this review is to present recent developments in conceptualizing ethical crisis standards. Recent findings: Several recent papers have raised concerns that "objective" scarce resource allocation protocols will serve to exacerbate underlying social inequities. Older adults and their formal and informal caregivers suffered from intersecting planning failures including lack of adequate stockpiling of personal protective equipment, failure to protect essential workers, neglect of long-term care facilities and homecare in disaster planning and de-prioiritization in triage algorithms. Summary: Revision of disaster planning guidelines is urgent. The time is now to apply lessons learned from COVID-19 before another disaster occurs. We present several suggestions for future plans.

Prehospital Frailty and Screening Criteria for Palliative Care Services in Critically Ill Older Adults: An Observational Cohort Study.

Background: The use of formalized criteria (or triggers) for palliative care services (PCSs) has been associated with increased use of PCSs in the intensive care unit (ICU). Objective: To explore the utility/validity of frailty as a trigger for providing PCSs. Design: This is a prospective cohort study. Setting/Subjects: Older adults (age ≥50 years) admitted to ICUs were enrolled. Measurements: We measured frailty using the Clinical Frailty Scale. We reviewed electronic health records for the presence/absence of six evidence-based triggers, the use and quality of specialty palliative care (SPC), and markers of primary palliative care (PPC). We used descriptive statistics to describe the differences in PPC, SPC, and six-month mortality by frailty and by the presence/absence of triggers. Results: In a study population of 302 older adults, mean (standard deviation) age 67.2 years (10.5), 151 (50%) were frail and 105 (34.8%) had ≥1 trigger for PCSs. Of the 151 (55.6%) frail patients, 84 had no triggers for PCSs, despite a 46.4% six-month mortality in this group. Patients with ≥1 trigger had higher rates of SPC than those without (39.1% vs. 18.3%, p < 0.001); frail patients also had higher SPC than nonfrail patients (32.5% vs. 18.5%, p = 0.006). Patients with ≥1 trigger had higher rates of PPC than those without (66.7% vs. 44.2%, p < 0.001); no statistically significant difference in PPC was found by frailty (56.3% vs. 47.7%, p = 0.134). Conclusion: The rates of PCSs and six-month mortality by frailty are consistent with frailty being a valid trigger for PCSs in ICUs; the high prevalence of frailty relative to triggers suggests that ways to increase PCSs would be needed.

"We're Not Ready, But I Don't Think You're Ever Ready." Clinician Perspectives on Implementation of Crisis Standards of Care.

Background: The COVID-19 pandemic has highlighted health care systems' vulnerabilities. Hospitals face increasing risk of periods of scarcity of life-sustaining resources such as ventilators for mechanical respiratory support, as has been the case in Italy as of March, 2020. The National Academy of Medicine has provided guidance on crisis standards of care, which call for the reallocation of scarce medical resources to those who will benefit most during extreme situations. Given that this will require a departure from the usual fiduciary duty of the bedside clinician, we determined and mapped potential barriers to the implementation of the guidelines from stakeholders using an implementation science framework. Methods: A protocol was created to operationalize national and state guidelines for triaging ventilators during crisis conditions. Focus groups and key informant interviews were conducted from July-September 2018 with clinicians at three acute care hospitals of an urban academic medical center. Respiratory therapists, intensivists, nursing leadership and the palliative care interdisciplinary team participated in focus groups. Key informant interviews were conducted with emergency management, respiratory therapy and emergency medicine. Subjects were presented the protocol and their reflections were elicited using a semi-structured interview guide. Data from transcripts and notes were categorized using a coding strategy based on the Theoretical Domains Framework. Results: Participants anticipated that implementing this protocol would challenge their roles and identities as clinicians including both their fiduciary duty to the patient and their decision-making autonomy. Despite this, many participants acknowledged the need for such a protocol to standardize care and minimize bias as well as to mitigate potential consequences for individual clinicians. Participants identified the question of considering patient quality of life in triage decisions as an important and unresolved ethical issue in disaster triage. Conclusion: Clinicians' discomfort with shifting roles and obligations could pose implementation barriers for crisis standards of care.

Race and Ethnicity and Satisfaction With Communication in the Intensive Care Unit.

PURPOSE: Racial and ethnic minority patients receive poorer quality end-of-life (EoL) care compared with white patients. Differences in quality of communication (QOC) with clinicians may contribute to these disparities. We measured differences in satisfaction with communication in the intensive care unit (ICU) by race and ethnicity. MATERIALS AND METHODS: This is a cross-sectional survey of family members of patients in ICUs of an academic medical center serving a diverse urban population using The Family Satisfaction with the ICU (FS-ICU) and QOC scales. RESULTS: One hundred surveys were completed (18.8% white, non-Hispanic; 34.4% black, non-Hispanic; 31.3% Hispanic; 15.6% other race/ethnicity). Mean FS-ICU score was 84.2 (standard deviation [SD] 20.5) for white patients, 83.3 (SD 16.2) for black patients, 82.7 (SD 17.8) for Hispanic or Latino patients, and 80.9 (SD 18.8) for patients with other race/ethnicity (Kruskal-Wallis, P = .92). Differences remained insignificant when controlling for patient and respondent characteristics. The QOC scale was not scored due to nonresponse levels on questions about EoL communication. CONCLUSIONS: Uniformly high ratings may have been influenced by avoidance of EoL discussion. This study is inconclusive regarding whether QOC influences disparities in EoL care since quality of EoL communication was not captured.

When Voluntary Stopping of Eating and Drinking in Advanced Dementia Is No Longer Voluntary.

In "On Avoiding Deep Dementia," Norman Cantor astutely notes that, for some individuals, the concept of "protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect." This cannot be argued with. Cantor's solution, however-that in the wake of a dementia diagnosis, patients should have the option to direct, in advance, instructions for voluntary stopping of eating and drinking should they develop a state of deep dementia-is more ethically challenging than it may first appear. Respect for autonomy is one of the most fundamental principles of bioethics, and it requires that we allow patients with capacity to refuse life-sustaining treatment, even when that treatment is something as seemingly innocuous as nutrition and hydration. If a capacitated person uses an advance directive to prospectively refuse artificial nutrition or hydration, then that treatment must be withheld if the person develops dementia and loses the ability or willingness to eat. Cantor is incorrect, however, in suggesting that an advance directive can require that nutrition and hydration be withheld from a patient with dementia who actively requests to eat or drink. Regardless of the language in an advance directive, caregivers cannot be compelled to abandon their duty to attend to the person's human dignity, nor can physicians be compelled to sedate a person with moderate or severe dementia because that person continues to be receptive to eating and drinking.