Conscience-Based Barriers to Medical Aid in Dying: A Survey of Colorado Physicians.

BACKGROUND: Approximately 20% of the United States' population lives in a state or jurisdiction where medical aid in dying (MAiD) is legal. It is unknown how physicians' own barriers are associated with their provision of the spectrum of MAiD services. OBJECTIVE: To measure physicians' religious and/or ethical barriers to providing MAiD services and how such barriers relate to physicians' intentions and behaviors. DESIGN: Three-wave cross-sectional survey fielded in Colorado in 2020-2021. PARTICIPANTS: Physicians providing care to patients likely clinically eligible for MAiD according to probabilistic sampling. MAIN MEASURES: Physicians self-reported barriers to their own participation in MAiD. We considered large ethical and/or religious barriers to be conscience-based barriers. We measured physicians' self-reported intention to participate and self-reported prior participation in MAiD since it was legalized in Colorado in 2017. We estimated differences in intention and behavior outcomes according to presence of conscience-based barriers, adjusting for physician gender, race/ethnicity, time in practice, and specialty. KEY RESULTS: Among 300 respondents, 26% reported "large" ethical and/or religious barriers to their involvement in MAiD. Physicians with longer time in practice and those identifying as non-White were more likely to report conscience-based barriers to MAiD. Comparing physicians with and without conscience-based barriers to MAiD, we found no difference in ancillary participation (discussing, referring) but significant differences in direct participation (serving as consultant [5% vs. 31%] or attending [0% vs. 22%]). CONCLUSIONS: Approximately one-quarter of physicians likely to care for MAiD-eligible patients in Colorado reported religious and/or ethical barriers to MAiD. Despite religious and/or ethical barriers, the vast majority of physicians were willing to discuss MAiD and/or refer patients seeking MAiD services. These data provide important empirical foundation for policy from hospitals and health systems as well as medical specialty groups with official positions on MAiD.

Ethics and Medical Aid in Dying: Physicians' Perspectives on Disclosure, Presence, and Eligibility.

Medical aid in dying (MAiD), despite being legal in many jurisdictions, remains controversial ethically. Existing surveys of physicians' perceptions of MAiD tend to focus on the legal or moral permissibility of MAiD in general. Using a novel sampling strategy, we surveyed physicians likely to have engaged in MAiD-related activities in Colorado to assess their attitudes toward contemporary ethical issues in MAiD.

Caring for Adults With Significant Levels of Intellectual Disability in Outpatient Settings: Results of a National Survey of Physicians.

Between 1% and 2% of the U.S. population has an intellectual disability (ID) and often experience disparities in health care. Communication patterns and sedation use for routine medical procedures are important aspects of care for this population. We explored physicians' communication patterns and sedation use in caring for patients with significant levels of ID through a mailed survey of 1,400 physicians among seven specialties in outpatient settings (response rate = 61.0%). Among physicians who saw at least one patient with significant levels of ID in an average month, 74.8% reported usually/always communicating primarily with someone other than the patient. Among specialists, 85.5% (95% CI: 80.5%-90.5%) reported doing so, compared to 69.9% (95% CI: 64.4%-75.4%) for primary care physicians (p < 0.001). Also, 11.4% reported sedating at least one patient with significant levels of ID for a routine procedure. Three quarters of physicians reported communicating primarily with persons other than the patient usually or always-an approach that, in some instances, may not align with best medical practice. The percentage of physicians who report sedating at least one individual is associated with significant ID and the physician's volume of patients with significant ID.

Accommodating hearing loss in outpatient physician offices in the U.S.

BACKGROUND: Approximately 16.2 million Americans ages 18 and older (5.7%) report being deaf or having serious difficulty hearing. Hearing loss impedes effective communication during clinical encounters putting patients' safety at risk. A large fraction of Americans with Disabilities Act lawsuits addresses whether providers offered auxiliary aids and services required to ensure effective communication. OBJECTIVE: Examine use of different hearing accommodations for deaf or hard of hearing patients by U.S. physicians. METHODS: We surveyed randomly selected physicians nationwide representing 7 specialties about their reported use of 8 types of accommodations when communicating with adult outpatients who are deaf or have significant difficulty hearing, even with hearing aids (overall weighted response rate = 61.0%). We performed a descriptive analysis of responses, using survey sampling weights. RESULTS: Among the 526 physicians in this analysis, most were male, white, urban, and practiced in community-based practices. Overall, 81.5% (SE = 1.9) reported that patients with significant hearing limitations get worse quality health care than others. Among participants, 49.8% (2.4) reported never using an in-person sign language interpreter hired by the practice, and 63.2% (2.4) never use video remote interpreting. In contrast, 30.7% (2.1) always and 29.8% (2.2) usually speak louder and slower to patients with significant hearing limitations. None of the 8 accommodations were always or usually used by 8.9% (1.3) of participants. CONCLUSIONS: More than 32 years after the Americans with Disabilities Act, most physicians do not offer accommodations sufficient to ensure effective communication with adult outpatients with significant hearing limitations.

A novel methodology to identify and survey physicians participating in medical aid-in-dying.

Physicians who participate in medical-aid-in-dying (MAID) cannot be easily identified and studied due to cost and anonymity barriers. We developed and empirically tested a novel methodology to identify and survey physicians highly likely to participate in MAID activities. We used a state-level comprehensive administrative claims database to identify a cohort of patients with diagnoses and hospice enrollment similar to those known to have filled a prescription for MAID from 2017-2018. We then identified physicians who provided routine outpatient care to these patients using National Provider Identifier numbers. We surveyed these physicians in 3 waves (n = 583 total surveys), ranking physicians in order of their likelihood of being asked about MAID for each wave based on characteristics including specialty and the number of unique patients they had provided care to. We re-ranked physicians in waves 2 and 3 based on responses from prior waves. Physicians were surveyed only once and there was no follow-up to preserve anonymity. Surveys assessed the proportion of respondents who participated in MAID activities (discussions, referrals, and/or prescriptions). We identified 6369 physicians that provided care to 2960 patients. In survey waves one, two, and three respectively, response rates (55%, 52%, and 55%; p = 0.98) and the proportion of respondents that participated in MAID activities (58%, 56%, and 42%; p = 0.05) were similar. Small adjustments made to physician ranking criteria in waves two and three did not increase the proportion of physicians that participated in MAID activities. We used a novel methodology using administrative data to identify and survey physicians at high likelihood of participating in MAID activities. We achieved good overall response rates (52%), and a high proportion of respondents that participated in MAID activities (52%), demonstrating that it is possible to overcome cost and anonymity barriers to conducting quantitative research on MAID. This methodology could be used in larger scale studies of MAID or other bioethical issues with "hidden" physician populations.

Physicians' Attitudes and Experiences with Medical Aid in Dying in Colorado: a "Hidden Population" Survey.

BACKGROUND: Approximately 20% of the US population live in states where MAiD is a legal, though highly contentious, practice. Little generalizable data exists on the experiences of MAiD providers who comprise a small, and intentionally hidden, population. OBJECTIVE: To examine the nature, extent, and consequences of physicians' participation in MAiD. DESIGN: An anonymous, multi-wave, mailed survey (RR= 55%). PARTICIPANTS: An enriched sample (n=583) of Colorado physicians caring for potential MAiD patients. MAIN MEASURES: Physician willingness, preparedness, and participation in a continuum of MAiD activities. Other outcomes include the effects of providing MAiD and the barriers physicians face related to MAiD. KEY RESULTS: Overall, 81.1% of respondents were willing to discuss MAiD with a patient, 88.3% to refer for MAiD, 46.3% to be a consultant, and 28.1% to be an attending. Fewer felt prepared to discuss MAiD (54.4%), provide a MAiD referral (62.8%), be a consultant (30.7%), or be an attending (18.0%). More than half of respondents (52.3%) had discussed MAiD with a patient, 27.3% provided a MAiD referral, 12.8% had been a MAiD consultant, and 8.5% had been a MAiD attending. Among MAiD consultants and attendings, 75% reported that their most recent MAiD case was emotionally fulfilling and professionally rewarding, though 75% also reported that it was time consuming and 46.9% reported that it was ethically challenging. Common barriers to physician participation in MAiD include lack of knowledge about MAiD (46.8%), the emotional (45.6%) and time (41.7%) investments, and ethical concerns (41.7%). CONCLUSIONS: Many physicians in our sample are both willing and prepared to discuss MAiD with patients and to provide MAiD referrals. Fewer are prepared and willing to serve as an attending or consultant and fewer have provided these services. MAID consultants and attendings largely report the experience to be emotionally fulfilling and professionally rewarding, but all respondents reported multiple barriers to participation.

US Physicians' Knowledge About The Americans With Disabilities Act And Accommodation Of Patients With Disability.

More than thirty years since the enactment of the Americans with Disabilities Act (ADA), people with disability continue to experience health care disparities. The ADA mandates that patients with disability receive reasonable accommodations. In our survey of 714 US physicians in outpatient practices, 35.8 percent reported knowing little or nothing about their legal responsibilities under the ADA, 71.2 percent answered incorrectly about who determines reasonable accommodations, 20.5 percent did not correctly identify who pays for these accommodations, and 68.4 felt that they were at risk for ADA lawsuits. Physicians who felt that lack of formal education or training was a moderate or large barrier to caring for patients with disability were more likely to report little or no knowledge of their responsibilities under the law and were more likely to believe that they were at risk for an ADA lawsuit. To achieve equitable care and social justice for patients with disability, considerable improvements are needed to educate physicians and make health care delivery systems more accessible and accommodating.

Incidence of Accommodations for Patients With Significant Vision Limitations in Physicians' Offices in the US.

IMPORTANCE: Despite documented disparities in health care for patients with significant vision impairments and legal mandates that patients with disability receive equitable care, little is known about the extent to which physicians practicing in the US accommodate these patients in outpatient clinical settings. OBJECTIVE: To empirically explore the extent of basic accommodations physicians practicing in the US provide to patients with significant vision limitations in outpatient care. DESIGN, SETTING, AND PARTICIPANTS: In this physician survey study, randomly selected physicians were surveyed throughout the US on their attitudes toward patients with disability. A total of 1400 randomly selected active board-certified physicians representing 7 specialties (family medicine, general internal medicine, rheumatology, neurology, ophthalmology, orthopedic surgery, and obstetrics-gynecology) were surveyed. Data were collected from October 2019 to June 2020. MAIN OUTCOMES AND MEASURES: Reported use of basic accommodations when caring for patients with significant vision limitations (defined here as blind or significant difficulty seeing even with glasses or other corrective lenses). Physicians' accommodation performance was assessed based on whether they always or usually described the clinic space and always or usually provided printed material in large font. Use of Braille materials was reported too rarely to include in analyses. RESULTS: Of the 462 survey participants, 297 of 457 (65.0%) were male. The weighted response rate was 61.0%. Only 48 physicians (9.1%; 95% CI, 6.6-12.3) provided both accommodations (always or usually describing clinic spaces and providing large-font materials), while 267 (60.2%; 95% CI, 55.3-65.0) provided neither of these accommodations. Although 62.8% (95% CI, 57.5-67.8; n = 245) of nonophthalmologists did not provide either accommodation, 29.3% (95% CI, 20.1-40.7; n = 22) of ophthalmologists also did not do so; only 24.0% (95% CI, 15.6-35.0; n = 18) of ophthalmologists provided both accommodations compared with 8.4% (95% CI, 5.4-12.7) of other physicians. CONCLUSIONS AND RELEVANCE: This survey study suggests that less than one-tenth of physicians practicing in the US who care for patients with significant vision limitations usually or always describe clinic spaces or provide large-font materials, and less than one-third of ophthalmologists do so. Actions to address this seem warranted.

Use of Accessible Weight Scales and Examination Tables/Chairs for Patients with Significant Mobility Limitations by Physicians Nationwide.

BACKGROUND: Mobility limitations are the most common disability type among the 61 million Americans with disability. Studies of patients with mobility limitations suggest that inaccessible medical diagnostic equipment poses significant barriers to care. METHODS: The study team surveyed randomly selected US physicians nationwide representing seven specialties about their reported use of accessible weight scales and exam tables/chairs when caring for patients with mobility limitations. A descriptive analysis of responses was performed, and multivariable logistic regression was used to examine associations between accessible equipment and participants' characteristics. RESULTS: The 714 participants (survey response rate = 61.0%) were primarily male, White, and urban, and had practiced for 20 or more years. Among those reporting routinely recording patients' weights (n = 399), only 22.6% (standard error [SE] = 2.2) reported always or usually using accessible weight scales for patients with significant mobility limitations. To determine weights of patients with mobility limitations, 8.1% always, 24.3% usually, and 40.0% sometimes asked patients. Physicians practicing ≥ 20 years were much less likely than other physicians to use accessible weight scales: odds ratio (OR) = 0.51 (95% confidence interval [CI] = 0.26-0.99). Among participants seeing patients with significant mobility limitations (n = 584), only 40.3% (SE = 2.2) always or usually used accessible exam tables or chairs. Specialists were much more likely than primary care physicians to use accessible exam tables/chairs: OR = 1.96 (95% CI = 1.29-2.99). CONCLUSION: More than 30 years after enactment of the Americans with Disabilities Act, most physicians surveyed do not use accessible equipment for routine care of patients with chronic significant mobility limitations.

Physicians' Perceptions Of People With Disability And Their Health Care.

More than sixty-one million Americans have disabilities, and increasing evidence documents that they experience health care disparities. Although many factors likely contribute to these disparities, one little-studied but potential cause involves physicians' perceptions of people with disability. In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly. More than thirty years after the Americans with Disabilities Act of 1990 was enacted, these findings about physicians' perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.

Medical Oncologists' Beliefs, Practices, and Knowledge Regarding Marijuana Used Therapeutically: A Nationally Representative Survey Study.

Background Although almost every state medical marijuana (MM) law identifies cancer as a qualifying condition, little research supports MM's use in oncology. We hypothesized that the discrepancy between these laws and the scientific evidence base poses clinical challenges for oncologists. Oncologists' beliefs, knowledge, and practices regarding MM were examined in this study. Methods In November 2016, we mailed a survey on MM to a nationally-representative, random sample of 400 medical oncologists. Main outcome measures included whether oncologists reported discussing MM with patients, recommended MM clinically in the past year, or felt sufficiently informed to make such recommendations. The survey also queried oncologists' views on MM's comparative effectiveness for several conditions (including its use as an adjunct to standard pain management strategies) and its risks compared with prescription opioids. Bivariate and multivariate analyses were performed using standard statistical techniques. Results The overall response rate was 63%. Whereas only 30% of oncologists felt sufficiently informed to make recommendations regarding MM, 80% conducted discussions about MM with patients, and 46% recommended MM clinically. Sixty-seven percent viewed it as a helpful adjunct to standard pain management strategies, and 65% thought MM is equally or more effective than standard treatments for anorexia and cachexia. Conclusion Our findings identify a concerning discrepancy between oncologists' self-reported knowledge base and their beliefs and practices regarding MM. Although 70% of oncologists do not feel equipped to make clinical recommendations regarding MM, the vast majority conduct discussions with patients about MM and nearly one-half do, in fact, recommend it clinically. A majority believes MM is useful for certain indications. These findings are clinically important and suggest critical gaps in research, medical education, and policy regarding MM.

Using Cognitive Testing to Develop Items for Surveying Asian American Cancer Patients and Their Caregivers as a Pathway to Culturally Competent Care.

We report the results from cognitive interviews with Asian American patients and their caregivers. We interviewed seven caregivers and six patients who were all bilingual Asian Americans. The main goal of the cognitive interviews was to test a survey instrument developed for a study about perspectives of Asian American patients with advanced cancer who are facing decisions around end-of-life care. We were particularly interested to see whether items commonly used in White and Black populations are culturally meaningful and equivalent in Asian populations, primarily those of Chinese and Vietnamese ethnicity. Our exploration shows that understanding respondents' language proficiency, degree of acculturation, and cultural context of receiving, processing, and communicating information about medical care can help design questions that are appropriate for Asian American patients and caregivers, and therefore can help researchers obtain quality data about the care Asian American cancer patients receive.

Perspectives of Decisional Surrogates and Patients Regarding Critical Illness Genetic Research.

BACKGROUND: Critical illness research is challenging due to disease severity and because patients are frequently incapacitated. Surrogates called upon to provide consent might not accurately represent patient preferences. Though commonplace, genetic data collection adds complexity in this context. We undertook this investigation to understand whether surrogate decision makers would be receptive to permitting participation in a critical illness genetics study and whether their decision making was consistent with that of the patient represented. METHODS: We invited individuals identified as surrogates for critically ill adults, if required, as well as patients once recovered to participate in a survey designed to understand attitudes about genetic research. Associations between dependent (receptivity to participation, concordance of responses) and independent variables were tested using bivariate and multivariate logistic regression analyses. RESULTS: Most of the entire surrogate sample (n=439) reported familiarity with research, including genetic research; tended to view research as useful; and were receptive to allowing their family member participate (with 39.6% and 38.1% stating that this would be "very" and "somewhat likely," respectively) even absent direct benefit. Willingness to participate was similar comparing genetic and non-genetic studies (χ2 [1,n=439]=0.00127, p=0.972), though respondents expressed worry regarding lack of confidentiality of genetic data. Responses were concordant in 70.8% of the 192 surrogate-patient pairs analyzed. In multivariate analysis, African American race was associated with less receptivity to genetic data collection (p<0.05). No factors associated with concordance of surrogate-patient response were identified. CONCLUSIONS: Surrogates' receptivity to critical illness research was not influenced by whether the study entailed collection of genetic data. While more than two-thirds of surrogate-patient responses for participation in genetics research were concordant, concerns expressed regarding genetic data often related to breach of confidentiality. Emphasizing safeguards in place to minimize such breeches might prove an effective strategy for enhancing recruitment.

Snus use and rejection in the USA.

OBJECTIVE: To determine whether snus might become a strategy for reducing the harm associated with cigarette smoking in the USA as appears to be the case in Sweden, we examined receptivity to snus use in two cities with the greatest exposure to the major brands. METHODS: A dual frame, telephone survey and a brief mail survey were conducted in 2011 and 2012 in Indianapolis, Indiana and Dallas/Fort Worth Texas. Over 5000 adults completed surveys. Trial, ever use, current use and reasons for using or quitting snus after trial were measured. RESULTS: Among male smokers, 29.9% had ever tried snus (CI 22.7 to 38.1) and 4.2% were current users (CI 1.6 to 10.7). Among female smokers, 8.5% ever tried snus (CI 4.4 to 15.7) and current use was unknown. Current use was virtually absent among former smokers and never smokers. A major predictor of any level of snus use was current use of conventional smokeless tobacco. Those who tried and gave up snus cited curiosity (41.3%) and the fact that it was available at low or no cost (30%) as reasons for trial; reasons for not continuing included preferring another form of tobacco (75.1%) and disliking the mouth feel (34.6%). Almost all current snus users indicated that they were trying to cut down on cigarettes, but few (3.9%) were using it to quit smoking entirely. CONCLUSIONS: The low rate of adoption of snus suggests that neither the hopes nor the fears surrounding this new product are likely to be realised in the USA with the current marketing patterns.

Does difficulty functioning in the surrogate role equate to vulnerability in critical illness research? Use of path analysis to examine the relationship between difficulty providing substituted judgment and receptivity to critical illness research participation.

PURPOSE: Individuals who struggle to provide substitute judgment for the critically ill often find it challenging to engage in decision making for therapeutic interventions. Although essential to the conduct of research, how these individuals respond to requests for clinical trial participation is poorly understood. METHODS: Survey data collected to examine surrogate attitudes toward research provided the conceptual framework to explore influences on decision making. Path analysis was used to derive the final model (nonlatent, fully recursive, 1 indicator/variable). RESULTS: Surrogates with list-wise complete records (406) were analyzed. The following variables were not retained in the final model: education, income, religiosity, decision-making experience, discussion of patient's wishes, number of individuals assisting with decision making, trust in care providers, difficulty making decisions, and responsibility for decision making. Being white and having experience making treatment decisions for the patient during the current intensive care unit encounter affected the likelihood the surrogate would permit participation in research positively (parameter estimates, 0.281 and 0.06, respectively). No variable reflecting difficulty functioning in the surrogate role was associated with permitting research participation. CONCLUSIONS: We were unable to demonstrate a relationship between perceived difficulty in decision making in the surrogate role and receptivity to clinical trial participation.

Public opinion about FDA regulation of menthol and nicotine.

OBJECTIVE: Regulations that reduce nicotine and eliminate menthol in cigarettes have been proposed to the US Food and Drug Administration (FDA) as product alterations that could reduce smoking prevalence in the USA. This study sought to assess the public response to either action. METHODS: A mail survey of a representative sample of 1074 adults was conducted in two major metropolitan areas to determine the level of support for immediate, gradual or no reduction of menthol and nicotine in cigarettes. RESULTS: There was more support for reducing nicotine (79%) than for reducing or removing menthol (59.5%). Most smokers (59.2%; 95% CI 50.7 to 67.2) and 36% of non-smokers (95% CI 31.7 to 40.8) opposed eliminating menthol, but few smokers (23.8%) or non-smokers (20.3%) were opposed to reducing nicotine. Logistic regression showed no significant effect of smoking status on support for reductions in nicotine, but that smokers were significantly less supportive than non-smokers of FDA action on menthol (OR=0.32, 95% CI 0.21 to 0.49). A significant race by smoking status interaction showed that African-American smokers were more supportive of removing menthol than non-African-American smokers. CONCLUSIONS: The greater smoker support for reductions in nicotine than menthol could be due to inaccurate beliefs about the disease risk associated with the two substances (ie, a belief that nicotine is more harmful than menthol), or to greater awareness of the sensory role that menthol plays in smokers' satisfaction. In any case, if FDA goes ahead with regulations to remove menthol, it will be important to develop strategies to reduce smoker resistance.

Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns.

BACKGROUND: Collection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients. METHODS: We analyzed survey data collected from 1,176 patients in nonurgent settings and 437 surrogates representing critically ill adults. Attitudes pertaining to genetic data (familiarity, perceptions, interest in participation, concerns) and demographic information were examined using univariate and multivariate techniques. RESULTS: We explored differences among respondents who were receptive (1,333) and nonreceptive (280) to genetic sample collection. Whereas factors positively associated with receptivity to research participation were "complete trust" in health-care providers (OR, 2.091; 95% CI, 1.544-2.833), upper income strata (OR, 2.319; 95% CI, 1.308-4.114), viewing genetic research "very positively" (OR, 3.524; 95% CI, 2.122-5.852), and expressing "no worry at all" regarding disclosure of results (OR, 2.505; 95% CI, 1.436-4.369), black race was negatively associated with research participation (OR, 0.410; 95% CI, 0.288-0.585). We could detect no difference in receptivity to genetic sample collection comparing ambulatory patients and surrogates (OR, 0.738; 95% CI, 0.511-1.066). CONCLUSIONS: Expressing trust in health-care providers and viewing genetic research favorably were associated with increased willingness for study enrollment, while concern regarding breach of confidentiality and black race had the opposite effect. Study setting had no bearing on willingness to participate.