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.

Specialty Differences in Medical Aid in Dying Experiences: Results of a Survey of Physicians in Colorado.

In Colorado, medical aid in dying (MAiD) is legal, allowing a terminally ill person to request a prescription and self-administer a medication to end their life. Such requests are granted under certain circumstances, including a malignant neoplasm diagnosis, with a goal of peaceful death. This study examined differences in attitudes and actual participation in MAiD between oncologists and non-oncologists, using data from a recent survey of physicians regarding MAiD.

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.

Communicating with Patients with Disability: Perspectives of Practicing Physicians.

BACKGROUND: Patient-centered care for people with disability requires effective communication and compliance with the Americans with Disabilities Act (ADA). OBJECTIVE: To understand physicians' perspectives on communication experiences with people with disability. DESIGN: Twenty semi-structured individual interviews. Interview recordings were transcribed verbatim for analysis. SETTING: Massachusetts, October 2017-January 2018. PARTICIPANTS: Twenty physicians ranging from 8 to 51 years in practice in primary care or 4 other specialties. MEASUREMENTS: Commonly expressed themes around communication with people with disability. RESULTS: Concerns coalesced around 4 broad categories: communication experiences with people who are deaf or hard of hearing, communication with people who are blind or have vision impairment, communication with people who have intellectual disability, and recommendations for improving communication. Although participants in this study reported various efforts to communicate effectively with patients with hearing or vision loss or intellectual disability, many gaps appear to remain, as well as instances where physicians' preferences run counter to patients' wishes and the ADA. Examples include physicians' preferences for remote, online sign language interpreters despite patients desiring in-person interpreters and suggesting that patients arrange for their own interpreters. Few educational materials are available in braille, and electronic medical records may not allow documents to be printed in large font for persons with low vision. Communicating with patients with intellectual disability raised particular concerns, with participants often preferring to interact with caregivers and minimal efforts to involve patients. CONCLUSIONS: Effective communication is necessary for ensuring the quality of health care for people with disability, and it is legally required under the ADA. Our results suggest that important gaps may remain in ensuring effective communication, and some practicing physicians could benefit from formal training in effective methods for communicating with patients with disability.

Accessibility of Medical Diagnostic Equipment for Patients With Disability: Observations From Physicians.

OBJECTIVE: To explore attitudes and practices of physicians relating to accessible medical diagnostic equipment in serving patients with mobility disability. DESIGN: Open-ended individual telephone interviews, which reached data saturation. Interview recordings were transcribed verbatim for qualitative conventional content analysis. SETTING: Massachusetts, the United States, October 2017-January 2018. PARTICIPANTS: Practicing physicians from 5 clinical specialties (N=20). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Common themes concerning physical accessibility. RESULTS: Mean ± SD time in practice was 27.5±12.5 years; 14 practices had height-adjustable examination tables; and 7 had wheelchair-accessible weight scales. The analysis identified 6 broad themes: height-adjustable examination tables have advantages; height-adjustable examination tables have drawbacks; transferring patients onto examination tables is challenging; rationale for examining patients in their wheelchairs; perceptions of wheelchair-accessible weight scales; and barriers and facilitators to improving physical accessibility. Major barriers identified by participants included costs of equipment, limited space, and inadequate payment for extra time required to care for persons with disability. Even physicians with accessible examination tables sometimes examined patients seated in their wheelchairs. CONCLUSIONS: Even if physicians have accessible equipment, they do not always use it in examining patients with disability. Future efforts will need to consider ways to eliminate these access barriers in clinical practice. Given small sample size, results are not generalizable to physicians nationwide and globally.

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.

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.

Use and Influence of Medical Aid in Dying Service on Physician Experiences.

Background: The involvement of Medical Aid in Dying (MAiD) experts to guide MAiD prescribers who may be unfamiliar with the process is unknown. Objective: To examine the involvement of consulting services on physician experiences participating in MAiD activities. Design: This is an anonymous survey. Participants: Colorado physicians (n = 583) likely to care for MAiD-eligible patients. Measures: Consulting services used in a recent MAiD case and perspectives on use of a MAiD service. Results: Of 300 physicians (response rate 55%), 49 physicians had served as a MAiD attending and/or consulting physician. In a recent MAiD case, commonly used services included palliative care (92%), hospice (81%), social work (78%), or a MAiD service (63%). When a MAiD service was not used vs. used, respondents felt the MAiD case was less professionally risky (28% vs. 7%, p = 0.04). Conclusion: Along with palliative care, hospice, and social work, use of an experienced MAiD service was relatively common. The role and function of MAiD services warrant further exploration.

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.

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.

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' 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.

Referral and utilization of paediatric bariatric surgery in an academic freestanding children's hospital with dedicated paediatric bariatric programme.

OBJECTIVE: This report estimates the percent of medically eligible adolescents who are referred for metabolic and bariatric surgery (MBS) evaluation or factors associated with referral. METHODS: This cross-sectional retrospective review evaluated patients aged 13 to 18 years seen between 2017 and 2019 for demographics, insurance status, body mass index (BMI), obesity-related comorbidities, and compared these data to patients whom had been referred and received MBS. RESULTS: Half of the patients (86 411/163137, 53%) between ages of 13 and 18 years identified had BMI documented, of which, 1974 (2.3%) were medically eligible for MBS, 238 (12%) were referred for MBS and 52 (22%) underwent MBS. Females had similar odds of being eligible for MBS [odds ratio (OR) = 1.01, 95% confidence interval (CI) 0.92-1.11, P = .9], but greater odds of referral (OR = 1.58, 95% CI 1.13-2.23, P = .009). Independently, miniorities and patients with public insurance had higher odds of being eligible for MBS, but similar odds of being referred as non-Hispanic white patients. Black patients with public insurance had greater odds of being referred for MBS (OR = 12.22, 95% CI 2.08-235.15, P = .022). Patients' multiple comorbidities had greater odds of being referred for MBS (OR = 2.16, 95% CI 1.29-3.68, P = .004). CONCLUSIONS: Referral is barrier for patients medically eligible for MBS; however, this barrier is not uniformly faced by all patients.

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.

Accommodating patients with obesity and mobility difficulties: Observations from physicians.

BACKGROUND: Given the growing population of U.S. adults with obesity and mobility disability, physicians will need to accommodate these patients. OBJECTIVE: To explore attitudes and practices of US physicians related to caring for patients with obesity and mobility disability. METHODS: Three open-ended, semi-structured, web-based focus group interviews with practicing physicians in selected specialties, which reached data saturation. Interviews were video recorded and transcribed for qualitative, conventional content analysis. Measurements included commonly expressed themes around caring for patients with obesity. RESULTS: Physicians recognized obesity as a disability that poses challenges to high quality, safe, and efficient patient care. Observations coalesced around four themes: (1) difficulty routinely tracking weight; (2) reluctance to transfer obese patients to exam tables; (3) barriers to diagnostic testing; and (4) weight stigma. Physicians described difficulties accurately assessing weight, performing complete physical examinations, arranging diagnostic imaging, and providing prenatal care for obese patients. Lack of accessible medical diagnostic equipment impeded care for patients with obesity. Other participants did not contest comments of individual participants' that suggested weight stigma. CONCLUSIONS: Our findings suggest that important gaps may remain in providing equitable access to care for patients with obesity, requiring additional training and accessible medical diagnostic equipment to safely accommodate these patients.

A stakeholder engagement method navigator webtool for clinical and translational science.

Stakeholder engagement is increasingly expected by funders and valued by researchers in clinical and translational science, yet many researchers lack access to expert consultation or training in selecting appropriate stakeholder engagement methods. We describe the development of a novel Stakeholder Engagement Navigator webtool. We conducted an environmental scan and literature review, along with investigator interviews, surveys, and engagement expert facilitated group discussion. We formally reviewed and cataloged 29 distinct engagement methods. To develop the webtool, we used an iterative design process that followed Design Thinking phases: empathize, define, ideate, prototype, and test. As prioritized during user testing, the Stakeholder Engagement Navigator webtool both educates and guides investigators in selecting an engagement method based on key criteria. The V1.0 Navigator webtool filters methods first by purpose of engagement (noted by 62% of users as the highest priority criteria), then by budget, time per stakeholder interaction, and total interactions. The tool is available at DICEMethods.org. The Stakeholder Engagement Navigator webtool is a user-centered, interactive webtool suitable for use by researchers seeking guidance on appropriate stakeholder engagement methods for clinical and translational research projects.

Exploring issues relating to disability cultural competence among practicing physicians.

BACKGROUND: Many factors contribute to the well-recognized health care disparities experienced by persons with disability, including failure of physicians to understand the lives of individuals with disability. Disability cultural competence considers physicians' ability to meet the social, cultural, and linguistic needs of this population. OBJECTIVES: To assess physicians' understanding of disability cultural competence and attitudes towards patients with disability. METHODS: Qualitative analyses of open-ended individual interviews averaging 41 min with 20 Massachusetts physicians from 5 different subspecialties, in practice for 8-51 years. Interview recordings were transcribed verbatim for conventional content analysis. RESULTS: Most participants defined disability using medically-focused concepts rather than concepts that recognize how social factors contribute to disability. All participants used disability culturally-competent language, such as "person-first language," at some points throughout their interviews. However, most participants also employed language that is now considered unacceptable or archaic, such as variations on the word "handicap," "wheelchair-bound," describing persons with disability as "suffering," and calling persons by their health condition (e.g., "COPDer"). Participants mentioned persons with mental illness and intellectual disability as particularly challenging, especially around communication and performing even routine tests or examinations. Recommendations for improving care included better listening to patients with disability and seeking their views about their care. CONCLUSIONS: In this exploratory study, most participants used language that is considered disability culturally competent at times but also employed many terms and concepts that are considered outdated and may be troubling to some persons with disability.

Knowledge Of Practicing Physicians About Their Legal Obligations When Caring For Patients With Disability.

Disability civil rights laws require equitable treatment of the approximately sixty-one million Americans with disability. However, federal reports and numerous research studies indicate that this diverse and growing population often experiences health care disparities. To examine one possible contributing factor, we interviewed practicing physicians to explore their knowledge of their obligations to accommodate patients with disability under federal civil rights law. Interviewees reported having had little formal training about, and demonstrated superficial or incorrect understanding of, their obligations in three potentially problematic areas: deciding which accommodations their practices should implement, refusing patients with disability, and holding patients accountable for costs of accommodations. The fact that practicing physicians might not fully understand their legal responsibilities when caring for people with disability may contribute to persisting inequity in their care, and it suggests that further education in the Americans with Disabilities Act and other disability civil rights laws may be warranted.