Ethical Considerations for Acutely Injured and Future Burn Patients Who Smoke While on Home Oxygen Therapy.

Home oxygen therapy (HOT) is prescribed to patients with pulmonary dysfunction to improve survival and quality of life. However, ignition of oxygen can lead to burns with significant morbidity and mortality. Providers who routinely treat this patient population face an ethical issue: balancing the obligation to provide beneficial treatment to a patient with the responsibility to protect that patient from suffering avoidable burn injuries. A thorough review was conducted to assess the literature regarding ethical considerations involved in managing patients who have been burned while smoking on HOT and who continue to smoke. Various aspects of this problem and potential approaches to address it were analyzed with respect to four core ethical principles of health care: beneficence, non-maleficence, autonomy and justice. For patients who repeatedly present with burns acquired secondary to smoking while on oxygen, the authors consider it ethically unacceptable to withhold standard of care intervention for acute burns because refusal to treat acute burns conflicts with all four ethical principles. A preventive strategy would encourage more judicious prescription of home oxygen therapy, supporting the principles of non-maleficence and beneficence. Additional preventive strategies include upstream solutions such as longitudinal patient education about smoking cessation and risks of smoking on home oxygen therapy. Physicians are tasked with the responsibility of both providing optimal care for this patient population and preventing future burn injuries. They may be able to address this challenging situation by thinking more critically about potential solutions while bearing in mind key ethical considerations and obligations.

Exploring Patients' and Chaplains' Perspectives About a Spiritual Care Program in the Primary Care Setting.

BACKGROUND: Spirituality is an important component of social and cultural identity that influences health-related beliefs, decision-making, and coping behaviors. Despite the importance of addressing spirituality in healthcare, research about its impact is limited, especially in the primary care setting. OBJECTIVE: This study aimed to explore patients' and chaplains' experiences of receiving or providing spiritual care in the primary care setting. METHODS: We conducted an in-depth interview qualitative research study. Participants included patient informants, a chaplain, and chaplains-in-training who participated in a spiritual care program at a primary care clinic. Interviews were transcribed and coded. Conventional qualitative research content analysis was performed. RESULTS: Eleven interviews were conducted - 7 with patient informants, 1 with a chaplain, and 3 with chaplains-in-training. Informants reported that in their experience spiritual care increased trust in their provider, made them feel safe to ask or share anything, improved their satisfaction with care, helped sustain healthy behavior change, and improved coping with chronic illness. Participants specifically attributed these positive experiences to chaplains' ability to respect and attend to patients' spirituality, create a safe space, help patients see the connection between their spirituality and health, and help patients tap into their own spirituality as a healthy means of coping. CONCLUSIONS: Spiritual care, when integrated into the primary care setting, has the potential, according to the report of our informants, to help achieve important health-related objectives, such as increased trust in their providers, sustained healthy behavior change, and happiness in spite of chronic illness. Now, more than ever, when our society is hurting from mistrust of our profession secondary to disinformation and discrimination, spiritual care has an important role to play in our efforts to gain our patients' trust so that we can support their healing.

"I'm a Survivor": Perceptions of Chronic Disease and Survivorship Among Individuals in Long-Term Remission from Opioid Use Disorder.

BACKGROUND: While opioid use disorder (OUD) is prevalent, little is known about what patients with OUD in sustained remission think about the chronic disease model of OUD and their perspectives of the cause, course, and ongoing treatment needs of their OUD. OBJECTIVE: To (1) examine patient perceptions of the chronic disease model of addiction and disease identity and (2) use an explanatory model framework to explore how these perceptions inform ongoing treatment needs and help maintain abstinence. DESIGN: Qualitative study of a cross-sectional cohort of patients with OUD in long-term sustained remission currently receiving methadone or buprenorphine. Participants completed a single in-depth, semi-structured individual interview. PARTICIPANTS: Twenty adults were recruited from two opioid treatment programs and two office-based opioid treatment programs in Baltimore, MD. Half of the participants were Black, had a median (IQR) age of 46.5 (43-52) years and the median (IQR) time since the last non-prescribed opioid was 12 (8-15) years. APPROACH: Hybrid deductive-inductive thematic analysis of the transcribed interviews. KEY RESULTS: Some participants described a chronic OUD disease identity where they continue to live with OUD. Participants who maintain an OUD identity describe inherent traits or predetermination of developing OUD. Maintaining a disease identity helps them remain vigilant against returning to drug use. Others described a post-OUD/survivor identity where they no longer felt they had OUD, but the experience remains. Each perspective informed attitudes about continued treatment with methadone or buprenorphine and strategies to remain in remission. CONCLUSIONS: The identity that people with OUD in sustained remission maintain was the lens through which they viewed other aspects of their OUD including cause and ongoing treatment needs. An alternative, post-OUD/survivorship model emerged or was accepted by participants who did not identify as currently having OUD. Understanding patient perspectives of OUD identity might improve patient-centered care and improve outcomes.

The Ethics of Extracorporeal Membrane Oxygenation: Revisiting the Principles of Clinical Bioethics.

BACKGROUND: Extracorporeal life support has become accepted as a rescue therapy for cardiopulmonary shock, and there have been over 100,000 extracorporeal membrane oxygenation (ECMO) cases since 1987. Rapid growth has presented ethical challenges and concerns. Here, we discuss core principles of bioethics in an attempt to more thoroughly appreciate the ethical concerns and considerations raised by use of this technology. METHODS: An extensive literature review was performed on current papers on ECMO and ethics. In this paper, we utilized 3 case studies to highlight 4 major tenets of bioethics as they relate to use of ECMO: autonomy, beneficence, nonmaleficence, and justice. RESULTS: Case studies presented involved unique perspectives on utilization of ECMO and a careful balance of benefits and harms as they relate to autonomy, beneficence, nonmaleficence and justice. We present nuanced interpretations of autonomy (eg, physician autonomy) and justice (eg, various providers interpret and offer ECMO differently). An additional challenge includes contending with potentially prolonged clinical courses and/or complications that either result directly from cannulation for ECMO or indirectly from being subject to ensuing extreme conditions and prolongation of life that medical science has yet to fully understand. CONCLUSIONS: ECMO programs continue to grow in number and capacity. A deep appreciation of the bioethical dimensions of this technology and its application must be pursued, understood and applied to individual patient scenarios.

Public Attitudes Regarding Hospitals and Physicians Encouraging Donations From Grateful Patients.

Importance: Philanthropy is an increasingly important source of support for health care institutions. There is little empirical evidence to inform ethical guidelines. Objective: To assess public attitudes regarding specific practices used by health care institutions to encourage philanthropic donations from grateful patients. Design, Setting, and Participants: Using the Ipsos KnowledgePanel, a probability-based sample representative of the US population, a survey solicited opinions from a primary cohort representing the general population and 3 supplemental cohorts (with high income, cancer, and with heart disease, respectively). Exposures: Web-based questionnaire. Main Outcomes and Measures: Descriptive analyses (with percentages weighted to make the sample demographically representative of the US population) evaluated respondents' attitudes regarding the acceptability of strategies hospitals may use to identify, solicit, and thank donors; perceptions of the effect of physicians discussing donations with their patients; and opinions regarding gift use and stewardship. Results: Of 831 individuals targeted for the general population sample, 513 (62%) completed surveys, of whom 246 (48.0%) were women and 345 (67.3%) non-Hispanic white. In the weighted sample, 47.0% (95% CI, 42.3%-51.7%) responded that physicians giving patient names to hospital fundraising staff after asking patients' permission was definitely or probably acceptable; 8.5% (95% CI, 5.7%-11.2%) endorsed referring without asking permission. Of the participants, 79.5% (95% CI, 75.6%-83.4%) reported it acceptable for physicians to talk to patients about donating if patients have brought it up; 14.2% (95% CI, 10.9%-17.6%) reported it acceptable when patients have not brought it up; 9.9% (95% CI, 7.1%-12.8%) accepted hospital development staff performing wealth screening using publicly available data to identify patients capable of large donations. Of the participants, 83.2% (95% CI, 79.5%-86.9%) agreed that physicians talking with their patients about donating may interfere with the patient-physician relationship. For a hypothetical patient who donated $1 million, 50.1% (95% CI, 45.4%-54.7%) indicated it would be acceptable for the hospital to show thanks by providing nicer hospital rooms, 26.0% (95% CI, 21.9%-30.1%) by providing expedited appointments, and 19.8% (95% CI, 16.1%-23.5%) by providing physicians' cell phone numbers. Conclusions and Relevance: In this survey study of participants drawn from the general US population, a substantial proportion did not endorse legally allowable approaches for identifying, engaging, and thanking patient-donors.

A medical student scholarly concentrations program: scholarly self-efficacy and impact on future research activities.

BACKGROUND: The Scholarly Concentrations program was established at Johns Hopkins University School of Medicine in 2009 with the aim of instilling passion for scholarship. OBJECTIVE: Our study aimed to determine whether the Scholarly Concentrations program achieves positive changes in medical student self-efficacy in conducting research and, if so, whether this results in future career aspirations toward scholarship. DESIGN: We used the Clinical Research Appraisal Inventory-Short Form (CRAI-SF) to assess changes in self-efficacy among students completing the Scholarly Concentrations program between 2014 and 2017. We calculated composite mean scores of six domains. We included outcomes on whether students published a manuscript, overall program perceptions, and likelihood of future research careers. We analyzed relationships between CRAI-SF scores and outcomes using paired t-tests and multivariable-adjusted logistic regression. RESULTS: A total of 419 students completed the Scholarly Concentrations program. All 6 CRAI domain scores showed significant improvements in self-efficacy between the pre-Scholarly Concentrations and post-Scholarly Concentrations ratings (range of changes 0.76-1.39, p < 0.05 for all). We found significant associations between post-Scholarly Concentrations self-efficacy ratings and course satisfaction (adjusted OR 1.57 [95% CI 1.20, 2.07]) and mentor satisfaction (OR 1.46 [1.15, 1.86]), as well as students' intent to conduct future research (OR 1.46 [1.15, 1.86]). These results were robust to sensitivity analyses, and pronounced in the group of students without prior research experience. CONCLUSIONS: Our findings suggest that a Scholarly Concentrations program is associated with an increased self-efficacy for research, and these changes in self-efficacy are associated with higher satisfaction in the scholarly experience and increased likelihood of pursuing scholarly work. Other medical schools could use such a tool of self-efficacy to both investigate the overall Scholarly Concentrations experience and understand factors that may increase interest in future physician-scientist pathways.

Ethical Issues and Recommendations in Grateful Patient Fundraising and Philanthropy.

Grateful patients provide substantial philanthropic funding for health care institutions, resulting in important societal benefits. Although grateful patient fundraising (GPFR) is widespread, it raises an array of ethical issues for patients, physicians, development professionals, and institutions. These issues have not been described comprehensively, and there is insufficient guidance to inform the ethical practice of GPFR. Consequently, the authors convened a "Summit on the Ethics of Grateful Patient Fundraising," with the goal of identifying primary ethical issues in GPFR and offering recommendations regarding how to manage them. Participants were 29 experts from across the United States who represented the perspectives of bioethics, clinical practice, development, law, patients, philanthropy, psychology, and regulatory compliance. Intensive discussions resulted in articulating ethical issues for physicians and other clinicians (discussions with patients about philanthropy; physician-initiated discussions; clinically vulnerable patients; conflicts of obligation and equity regarding physician's time, attention, and responsiveness and the provision of special services; and transparency and respecting donor intent) as well as for development officers and institutions (transparency in the development professional-donor relationship; impact on clinical care; confidentiality and privacy; conflicts of interest; institution-patient/donor relationship; concierge services for grateful patients; scientific merit and research integrity; transparency in use of philanthropic gifts; and institutional policies and training in responsible GPFR). While these recommendations promise to mitigate some of the ethical issues associated with GPFR, important next steps include conducting research on the ethical issues in GPFR, disseminating these recommendations, developing standardized training for clinicians regarding them, and revising them as warranted.

Minority race and male sex as risk factors for non-beneficial gastrostomy tube placements after stroke.

BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) tubes are widely used for enteral feeding after stroke; however, PEG tubes placed in patients in whom death is imminent are considered non-beneficial. AIM: We sought to determine whether placement of non-beneficial PEG tubes differs by race and sex. DESIGN AND SETTING/PARTICIPANTS: In this retrospective cohort study, inpatient admissions for stroke patients who underwent palliative/withdrawal of care, were discharged to hospice, or died during the hospitalization, were identified from the Nationwide Inpatient Sample between 2007 and 2011. Logistic regression was used to evaluate the association between race and sex with PEG placement. RESULTS: Of 36,109 stroke admissions who underwent palliative/withdrawal of care, were discharge to hospice, or experienced in-hospital death, a PEG was placed in 2,258 (6.3%). Among PEG recipients 41.1% were of a race other than white, while only 22.0% of patients without PEG were of a minority race (p<0.001). The proportion of men was higher among those with compared to without a PEG tube (50.0% vs. 39.2%, p<0.001). Minority race was associated with PEG placement compared to whites (OR 1.75, 95% CI 1.57-1.96), and men had 1.27 times higher odds of PEG compared to women (95% CI 1.16-1.40). Racial differences were most pronounced among women: ethnic/racial minority women had over 2-fold higher odds of a PEG compared to their white counterparts (OR 2.09, 95% CI 1.81-2.41), while male ethnic/racial minority patients had 1.44 increased odds of a PEG when compared to white men (95% CI 1.24-1.67, p-value for interaction <0.001). CONCLUSION: Minority race and male sex are risk factors for non-beneficial PEG tube placements after stroke.

A Direct Observation Checklist to Measure Respect and Dignity in the ICU.

OBJECTIVE: Treating patients and family members with respect and dignity is a core objective of health care, yet it is unclear how best to measure this in the ICU setting. Accordingly, we sought to create a direct observation checklist to assess the "respect and dignity status" of an ICU. DESIGN: A draft checklist based on previous work was iteratively revised to enhance accuracy and feasibility. SETTING: Seven ICUs within the Johns Hopkins Health System. SUBJECTS: A total of 351 patient-clinician encounters with 184 different patients. INTERVENTIONS: Four study team members pilot tested the checklist between January and August 2015. MEASUREMENTS AND MAIN RESULTS: Standard psychometric analyses were performed. The direct observation checklist exhibits strong content and face validity as well as high reliability and internal consistency. All items load on one factor that supports the unidimensionality of the total index. Furthermore, concurrent validity of the direct observation checklist is demonstrated by statistically significant differences in mean scores between ICUs, between types of clinicians, and between patients' clinical status and mood. CONCLUSIONS: We rigorously developed, pilot tested, and analyzed a direct observation checklist designed to assess the extent to which patients and families in the ICU setting are treated with respect and dignity. Future research should validate this checklist in other settings and compare its results with other measures. Data gathered about individual items on the direct observation checklist could be used to target areas for training and education; doing so should help facilitate more respectful treatment of patients and their families.

ICU-RESPECT: An index to assess patient and family experiences of respect in the intensive care unit.

PURPOSE: The purpose of the study is to develop a brief index of patient and family experiences of respect in the intensive care unit (ICU). MATERIALS AND METHODS: We designed a questionnaire with 44 items representing 12 themes that emerged from prior in-depth interviews with ICU patients and families. After pilot testing, items with minimal variability were eliminated. The resulting 21-item questionnaire was administered to patients and families in 5 adult ICUs. Psychometric analyses were conducted. RESULTS: Fifty-seven questionnaires were completed. Factor analysis resulted in a unidimensional scale consisting of 10 items with an α of .85 and an Eigen value of 11.3. Factor loadings ranged from 0.54 to 0.84, and item-test correlations ranged from 0.47 to 0.71. The mean total score was 7.25 out of a maximum of 10. Scores were lower for surgical than medical or disease-specific ICUs. CONCLUSIONS: The "ICU-RESPECT" index demonstrates high reliability and concurrent validity in ICU patients and families. Future research should validate this index in other ICU settings, assess its predictive validity, and evaluate different methods for maximizing response rate. As hospitals address patient experience more broadly in response to national metrics, the index could identify particular behaviors or ICUs that would benefit from interventions to enhance respectful treatment.

What patients with addiction disorders need from their primary care physicians: A qualitative study.

BACKGROUND: Although strong relationships between primary care providers (PCPs) and patients with addictive disease are essential for care, these relationships are often strained. Providers frequently have negative attitudes about treating these patients, in part due to the practical and psychosocial challenges that come with addictive disease. Resulting hostility frequently causes avoidance of primary care by patients with potentially increased morbidity. However, gaining knowledge of patient perspectives on these relationships could improve physician attitudes toward patients with addictive disease and relatedly improve care. METHODS: The authors conducted 18 semistructured interviews of patients with current or prior debilitating addictive disease recruited from a primary care practice in East Baltimore. Interview transcripts were analyzed using editing analysis to reveal major themes. RESULTS: Participants elucidated several provider characteristics that were essential for successful relationships. Providers needed to be knowledgeable about addiction, feel responsible for treating these patients, emphasize overall health, and engage patients in their own care. Additionally, participants strongly desired providers who treated them as "people" that they cared about. Interestingly, interviewees also frequently cited patient characteristics that could affect the strength of patient-provider relationships. These included being concerned about their health, feeling deserving of care, and having appropriate psychiatric care for concomitant mental health conditions. Practical obstacles and a disorganized mindset impeded patient-provider relationships. CONCLUSIONS: The interpersonal dynamics of the patient-provider relationship are particularly important for patients with addictive disease, as this relationship may be one of the most stable and rewarding in their lives. Patients felt that greater understanding of the practical and psychosocial challenges of addiction enabled providers to more effectively address their health concerns and to be more caring and less judgmental. It is hoped that this work will contribute to providers' understanding of patients with addictions, thus allowing them to form stronger relationships and ultimately provide better care.

The essential role of medical ethics education in achieving professionalism: the Romanell Report.

This article-the Romanell Report-offers an analysis of the current state of medical ethics education in the United States, focusing in particular on its essential role in cultivating professionalism among medical learners. Education in ethics has become an integral part of medical education and training over the past three decades and has received particular attention in recent years because of the increasing emphasis placed on professional formation by accrediting bodies such as the Liaison Committee on Medical Education and the Accreditation Council for Graduate Medical Education. Yet, despite the development of standards, milestones, and competencies related to professionalism, there is no consensus about the specific goals of medical ethics education, the essential knowledge and skills expected of learners, the best pedagogical methods and processes for implementation, and optimal strategies for assessment. Moreover, the quality, extent, and focus of medical ethics instruction vary, particularly at the graduate medical education level. Although variation in methods of instruction and assessment may be appropriate, ultimately medical ethics education must address the overarching articulated expectations of the major accrediting organizations. With the aim of aiding medical ethics educators in meeting these expectations, the Romanell Report describes current practices in ethics education and offers guidance in several areas: educational goals and objectives, teaching methods, assessment strategies, and other challenges and opportunities (including course structure and faculty development). The report concludes by proposing an agenda for future research.

Patient and family perspectives on respect and dignity in the intensive care unit.

Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU.

Health care professionals' perceptions and experiences of respect and dignity in the intensive care unit.

Little is known about health care professionals' perceptions regarding what it means to treat patients and families with respect and dignity in the intensive care unit (ICU) setting. To address this gap, we conducted nine focus groups with different types of health care professionals (attending physicians, residents/fellows, nurses, social workers, pastoral care, etc.) working in either a medical or surgical ICU within the same academic health system. We identified three major thematic domains, namely, intrapersonal (attitudes and beliefs), interpersonal (behaviors), and system (contextual) factors that influence treatment with respect and dignity. Participants suggested strategies for improving treatment of patients and families in the ICU with respect and dignity, as well as the related need for enhancing respect among the multidisciplinary team of clinicians. Implementing these strategies will require innovative educational interventions and leadership. Future research should focus on the design and evaluation of such interventions on the quality of care.

Observations of respect and dignity in the intensive care unit.

Treating patients and their family members with respect and dignity is a broadly accepted goal of health care. The work presented in this article is part of a larger project aimed at better understanding what constitutes treatment with respect and dignity in the ICU to improve the care that patients and family members receive in this regard. Direct observation was selected as one of the methods to facilitate this understanding because it provides the opportunity to see and document what actually occurs during encounters among patients, their families, and clinicians. This article reports seven major thematic domains and many subthemes that together create a detailed account of the interpersonal and environmental components of treatment with respect and dignity. Attention to these components might enhance the experience and treatment of patients and family members.

Understanding treatment with respect and dignity in the intensive care unit.

Despite wide recognition of the importance of treating patients with respect and dignity, little is known about what constitutes treatment in this regard. The intensive care unit (ICU) is a unique setting that can pose specific threats to treatment with respect and dignity owing to the critical state of patients, stress and anxiety amongst patients and their family members, and the highly technical nature of the environment. In attempt to understand various stakeholders' perspectives of treatment with respect and dignity, patients and family members were interviewed, a wide range of health care professionals participated in focus groups, and third party observers took field notes of interactions in the ICU. This paper compares and contrasts the data that were generated using these different methods. Triangulating the data in this way contributes to a more complete and nuanced understanding of treatment with respect and dignity in the ICU.

"Am I cut out for this?" Understanding the experience of doubt among first-year medical students.

PURPOSE: Existing research shows that medical students experience high levels of distress. The purpose of this study was to understand how medical students experience doubt, and how doubt relates to distress. METHODS: A mixed-methods study was conducted among first-year students at the Johns Hopkins University School of Medicine in June 2012. Students answered survey questions and participated in focus groups about doubt and other forms of distress. RESULTS: Ninety-four percent (112) of students responded to the survey, with 49% reporting a moderate or high degree of doubt. Compared to those reporting no or low doubt, students with moderate/high doubt were significantly more likely to question their purpose and identity, struggle to cope with doubt, and experience depression and emotional hardening. Twenty-eight percent of students (34/112) participated in focus groups to explore their doubt, and three themes emerged: types of doubt, ways of coping with doubt, and impact of doubt. CONCLUSIONS: Doubt is highly prevalent among first-year medical students, affects their identity and purpose, and has positive and negative consequences. Doubt among medical students merits awareness and further study, as it may be an important mediator of students' emerging identity and sense of well-being.