Perceptions of specialty palliative care and its role in pediatric stem cell transplant: A multidisciplinary qualitative study.

BACKGROUND: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT. Little is known about how multidisciplinary pediatric SCT teams perceive palliative care and its role in SCT. PROCEDURE: We conducted semistructured interviews of members of a multi-disciplinary SCT team to understand their perceptions of palliative care, how specialty palliative care is integrated into SCT, and to identify barriers to increased integration. Eligible participants included physicians, nurses, inpatient nurse practitioners, social workers, and child life specialists. Data were analyzed using thematic analysis. RESULTS: Four major themes were identified. First, SCT team members held a favorable perception of the palliative care team. Second, participants desired increased palliative care integration in SCT. Third, participants believed that the palliative care team had insufficient resources to care for the large number of SCT patients, which led to the SCT team limiting palliative care consultation. And, finally, the lack of a standardized palliative care consultation process prevented greater integration of palliative care in SCT. CONCLUSIONS: SCT team members held a favorable perception of palliative care and saw a role for greater palliative care integration throughout the SCT course. We identified modifiable barriers to greater palliative care integration. SCT teams who desire greater palliative care integration may adapt and implement an existing model of palliative care integration in order to improve standardization and increase integration of specialty palliative care in SCT.

Understanding Experiences of Moral Distress in End-of-Life Care Among US and UK Physician Trainees: a Comparative Qualitative Study.

BACKGROUND: Moral distress is a state in which a clinician cannot act in accordance with their ethical beliefs because of external constraints. Physician trainees, who work within rigid hierarchies and who lack clinical experience, are particularly vulnerable to moral distress. We examined the dynamics of physician trainee moral distress in end-of-life care by comparing experiences in two different national cultures and healthcare systems. OBJECTIVE: We investigated cultural factors in the US and the UK that may produce moral distress within their respective healthcare systems, as well as how these factors shape experiences of moral distress among physician trainees. DESIGN: Semi-structured in-depth qualitative interviews about experiences of end-of-life care and moral distress. PARTICIPANTS: Sixteen internal medicine residents in the US and fourteen junior doctors in the UK. APPROACH: The work was analyzed using thematic analysis. KEY RESULTS: Some drivers of moral distress were similar among US and UK trainees, including delivery of potentially inappropriate treatments, a poorly defined care trajectory, and involvement of multiple teams creating different care expectations. For UK trainees, healthcare team hierarchy was common, whereas for US trainees, pressure from families, a lack of guidelines for withholding inappropriate treatments, and distress around physically harming patients were frequently cited. US trainees described how patient autonomy and a fear of lawsuits contributed to moral distress, whereas UK trainees described how societal expectations around resource allocation mitigated it. CONCLUSION: This research highlights how the differing experiences of moral distress among US and UK physician trainees are influenced by their countries' healthcare cultures. This research illustrates how experiences of moral distress reflect the broader culture in which it occurs and suggests how trainees may be particularly vulnerable to it. Clinicians and healthcare leaders in both countries can learn from each other about policies and practices that might decrease the moral distress trainees experience.

Spheres of Influence and Strategic Advocacy for Equity in Medicine.

As the extent of health disparities in the USA has been revealed, particularly during the COVID-19 pandemic, physicians have increasingly attended to their roles as advocates for their patients and communities. This article presents "spheres of influence" as a concept that can help physicians think strategically about how to build upon their clinical work and expertise to promote equity in medicine. The physician's primary sphere of influence is in direct patient care. However, physicians today often have many other roles, especially within larger health care institutions in which physicians often occupy positions of authority. Physicians are therefore well-positioned to act within these spheres in ways that draw upon the ethical principles that guide patient care and contribute materially to the cause of equity for colleagues and patients alike. By making changes to the ways they already work within their clinical spaces, institutional leadership roles, and wider communities, physicians can counteract the structural problems that undermine the health of the patients they serve.

How individual ethical frameworks shape physician trainees' experiences providing end-of-life care: a qualitative study.

OBJECTIVES: The end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care. DESIGN: We conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis. SETTING: Academic teaching hospitals in the United States and United Kingdom. PARTICIPANTS: We interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives. RESULTS: Some trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient's goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker. CONCLUSIONS: This study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians' ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

Moral distress and burnout in caring for older adults during medical school training.

BACKGROUND: Moral distress is a reason for burnout in healthcare professionals, but the clinical settings in which moral distress is most often experienced by medical students, and whether moral distress is associated with burnout and career choices in medical students is unknown. We assessed moral distress in medical students while caring for older patients, and examined associations with burnout and interest in geriatrics. METHODS: A cross-sectional survey study of second-, third-, and fourth-year medical students at an American medical school. The survey described 12 potentially morally distressing clinical scenarios involving older adult patients. Students reported if they encountered each scenario, and whether they experienced moral distress, graded on a 1-10 scale. We conducted a principal axis factor analysis to assess the dimensionality of the survey scenarios. A composite moral distress score was calculated as the sum of moral distress scores across all 12 scenarios. Burnout was assessed using the Maslach Abbreviated Burnout Inventory, and interest in geriatrics was rated on a 7-point Likert scale. RESULTS: Two-hundred and nine students responded (47%), of whom 90% (188/209) reported moral distress in response to ≥1 scenario with a median (IQR) score of 6 (4-7). Factor analysis suggested a unidimensional factor structure of the 12 survey questions that reliably measured individual distress (Cronbach alpha = 0.78). Those in the highest tertile of composite moral distress scores were more likely to be burnt out (51%) than those in the middle tertile of scores (34%), or lowest tertile of scores (31%) (p = 0.02). There was a trend towards greater interest in geriatrics among those in the higher tertiles of composite moral distress scores (16% lowest tertile, 20% middle tertile, 25% highest tertile, p-for-tend = 0.21). Respondents suggested that moral distress might be mitigated with didactic sessions in inpatient geriatric care, and debriefing sessions with peers and faculty on the inpatient clerkships on medicine, neurology, and surgery, where students most often reported experiencing moral distress. CONCLUSIONS: Moral distress is highly prevalent among medical students while caring for older patients, and associated with burnout. Incorporating geriatrics education and debriefing sessions into inpatient clerkships could alleviate medical student moral distress and burnout.

Habermasian communication pathologies in do-not-resuscitate discussions at the end of life: manipulation as an unintended consequence of an ideology of patient autonomy.

The focus on patient autonomy in American and increasingly British medicine highlights the importance of choice. However, to truly honour patient autonomy, there must be both understanding and non-control. Fifty-eight semi-structured in-depth interviews were conducted with internal medicine physicians at three hospitals in the US and one in the UK. At hospitals where autonomy was prioritised, trainees equated autonomy with giving a menu of choices and felt uncomfortable giving a recommendation based on clinical knowledge as they worried that that would infringe upon patient autonomy. Employing Habermas's Theory of Communicative Action, this paper explores how physician trainees' communication practices of using purposefully graphic descriptions of resuscitation to discourage that choice prevent greater understanding and compromise non-control. Central to this problem are also issues of colonisation of the life-world by the system. Physicians are fully inculcated in their respect for autonomy but unintentionally resort to strategic forms of communication that prevent patients from adequately understanding their situation because trainees feel constrained against making recommendations. However, if the ideal of autonomy is to be realised, physicians might have to move towards practices that embrace a more authentic autonomy that fosters open communication that allows for co-creation of consensus between doctors and patients.

Ethical Issues in the Design and Implementation of Population Health Programs.

Spurred on by recent health care reforms and the Triple Aim's goals of improving population health outcomes, reducing health care costs, and improving the patient experience of care, emphasis on population health is increasing throughout medicine. Population health has the potential to improve patient care and health outcomes for individual patients. However, specific population health activities may not be in every patient's best interest in every circumstance, which can create ethical tensions for individual physicians and other health care professionals. Because individual medical professionals remain committed primarily to the best interests of individual patients, physicians have a unique role to play in ensuring population health supports this ethical obligation. Using widely recognized principles of medical ethics-nonmaleficence/beneficence, respect for persons, and justice-this article describes the ethical issues that may arise in contemporary population health programs and how to manage them. Attending to these principles will improve the design and implementation of population health programs and help maintain trust in the medical profession.

How California Prepared for Implementation of Physician-Assisted Death: A Primer.

Physician-assisted death is now legal in California, and similar laws are being considered in many other states. The California law includes safeguards, yet health care providers will face practical and ethical issues while implementing physician-assisted death that are not addressed by the law. To help providers and health care facilities in California prepare to provide optimal care to patients who inquire about physician-assisted death, we brought together experts from California, Oregon, and Washington. We convened a conference of 112 stakeholders in December 2015, and herein present their recommendations. Themes of recommendations regarding implementation include (1) institutions should develop and revise physician-assisted death policies; (2) legal physician-assisted death will have implications for California's culturally and socioeconomically diverse population, and for patients from vulnerable groups; (3) conscientious objection and moral distress for health care providers must be considered; and (4) palliative care is essential to the response to the law. The expert conference participants' insights are a valuable guide, both for providers and health care facilities in California planning or revising their response, and for other jurisdictions where physician-assisted death laws are being considered or implemented.

When Teachable Moments Become Ethically Problematic.

There is frequently tension in medical education between teaching moments that provide skills and knowledge for medical trainees, and instrumentalizing patients for the purpose of teaching. In this commentary, I question the ethical acceptability of the practice of providing cardiopulmonary resuscitation (CPR) and advanced cardiac life support (ACLS) to dying patients who would be unlikely to survive resuscitation, as a teaching opportunity for medical trainees. This practice violates the principle of informed consent, as the patient agreed to resuscitation for the purpose of potentially prolonging life rather than to futile resuscitation as a teaching opportunity. Justifying futile resuscitation in order to practice normalizes deceptive and nonconsensual teaching cases in medical training. Condoning these behaviors as ethically acceptable trains physicians to believe that core ethical principles are relative and fluid to suit one's purpose. I argue that these practices are antithetical to the principles espoused by both medical ethics and physician professionalism.

Moral Distress Amongst American Physician Trainees Regarding Futile Treatments at the End of Life: A Qualitative Study.

BACKGROUND: Ethical challenges are common in end of life care; the uncertainty of prognosis and the ethically permissible boundaries of treatment create confusion and conflict about the balance between benefits and burdens experienced by patients. OBJECTIVE: We asked physician trainees in internal medicine how they reacted and responded to ethical challenges arising in the context of perceived futile treatments at the end of life and how these challenges contribute to moral distress. DESIGN: Semi-structured in-depth qualitative interviews. PARTICIPANTS: Twenty-two internal medicine residents and fellows across three American academic medical centers. APPROACH: This study uses systematic qualitative methods of data gathering, analysis and interpretation. KEY RESULTS: Physician trainees experienced significant moral distress when they felt obligated to provide treatments at or near the end of life that they believed to be futile. Some trainees developed detached and dehumanizing attitudes towards patients as a coping mechanism, which may contribute to a loss of empathy. Successful coping strategies included formal and informal conversations with colleagues and superiors about the emotional and ethical challenges of providing care at the end of life. CONCLUSIONS: Moral distress amongst physician trainees may occur when they feel obligated to provide treatments at the end of life that they believe to be futile or harmful.