Caesarean section on maternal request: a qualitative study of conflicts related to shared decision-making and person-centred care in Sweden.

BACKGROUND: Today, person-centred care is seen as a cornerstone of health policy and practice, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). The aim of this study was to explore Swedish health professionals' perspectives on CSMR and analyse them with regard to potential conflicts that may arise from person-centred care, specifically in relation to shared decision-making. METHODS: A qualitative study using both inductive and deductive content analysis was conducted based on semi-structured interviews. It was based on a purposeful sampling of 12 health professionals: seven obstetricians, three midwives and two neonatologists working at different hospitals in southern and central Sweden. The interviews were recorded either in a telephone call or in a video conference call, and audio files were deleted after transcription. RESULTS: In the interviews, twelve types of expressions (sub-categories) of five types of conflicts (categories) between shared decision-making and CSMR emerged. Most health professionals agreed in principle that women have the right to decide over their own body, but did not believe this included the right to choose surgery without medical indications (patient autonomy). The health professionals also expressed that they had to consider not only the woman's current preferences and health but also her future health, which could be negatively impacted by a CSMR (treatment quality and patient safety). Furthermore, the health professionals did not consider costs in the individual decision, but thought CSMR might lead to crowding-out effects (avoiding treatments that harm others). Although the health professionals emphasised that every CSMR request was addressed individually, they referred to different strategies for avoiding arbitrariness (equality and non-discrimination). Lastly, they described that CSMR entailed a multifaceted decision being individual yet collective, and the use of birth contracts in order to increase a woman's sense of security (an uncomplicated decision-making process). CONCLUSIONS: The complex landscape for handling CSMR in Sweden, arising from a restrictive approach centred on collective and standardised solutions alongside a simultaneous shift towards person-centred care and individual decision-making, was evident in the health professionals' reasoning. Although most health professionals emphasised that the mode of delivery is ultimately a professional decision, they still strived towards shared decision-making through information and support. Given the different views on CSMR, it is of utmost importance for healthcare professionals and women to reach a consensus on how to address this issue and to discuss what patient autonomy and shared decision-making mean in this specific context.

Person-centered care is today a widespread approach, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). This study examines Swedish health professionals' views on CSMR. Interviews with 12 health professionals reveal conflicts between CSMR and key aspects of person-centered care, in particular shared decision-making. While professionals acknowledge women's autonomy, they question CSMR without medical need. Concerns include for example treatment quality and patient safety, and avoiding treatments that harm others. The Swedish context, balancing collective solutions with individualized care, complicates decision-making. Unlike countries with more private healthcare, where CSMR support might be higher, Swedish health professionals emphasize shared decision-making despite viewing the mode of delivery as primarily a professional decision. This study sheds light on the challenges in integrating CSMR into person-centered care frameworks.

Learning from disability studies to introduce the role of the individual to naturalistic accounts of disease.

Disability studies have been successfully focusing on individuals' lived experiences, the personalization of goals, and the constitution of the individual in defining disease and restructuring public understandings of disability. Although they had a strong influence in the policy making and medical modeling of disease, their framework has not been translated to traditional naturalistic accounts of disease. I will argue that, using new developments in evolutionary biology (Extended Evolutionary Synthesis [EES] about questions of proper function) and behavioral ecology (Niche conformance and construction about the questions of reference classes in biostatistics accounts), the main elements of the framework of disability studies can be used to represent life histories at the conceptual level of the two main "non-normative" accounts of disease. I chose these accounts since they are related to medicine in a more descriptive way. The success of the practical aspects of disability studies this way will be communicated without causing injustice to the individual since they will represent the individuality of the patient in two main naturalistic accounts of disease: the biostatistical account and the evolutionary functional account. Although most accounts criticizing the concept of disease as value-laden do not supply a positive element, disability studies can supply a good point for descriptive extension of the concept through inclusion of epistemic agency.

Patient autonomy in the era of the sustainability crisis.

In the realm of medical ethics, the foundational principle of respecting patient autonomy holds significant importance, often emerging as a central concern in numerous ethically complex cases, as authorizing medical assistance in dying or healthy limb amputation on patient request. Even though advocates for either alternative regularly utilize prima facie principles to resolve ethical dilemmas, the interplay between these principles is often the core of the theoretical frameworks. As the ramifications of the sustainability crisis become increasingly evident, there is a growing need to integrate awareness for sustainability into medical decision-making, thus reintroducing potential conflict with patient autonomy. The contention of this study is that the ethical standards established in the 20th century may not adequately address the challenges that have arisen in the 21st century. The author suggests an advanced perception of patient autonomy that prioritizes fostering patients' knowledge, self-awareness, and sense of responsibility, going beyond a sole focus on their intrinsic values. Empowering patients could serve as a tool to align patient autonomy, beneficence, and the aim to reduce resource consumption.

[Advance directives and mental disorders: a practice recommendation of the Commission for Ethics and Law of the German Association for Psychiatry, Psychotherapy and Psychosomatics]. / Patientenverfügungen und psychische Erkrankung ­ eine Praxisempfehlung der Kommission Ethik und Recht der DGPPN.

BACKGROUND: Since the creation of legal requirements for advance directives by the legislator in 2009, special aspects of their application in the treatment of people with mental illnesses have been discussed. GOAL OF THE PAPER: Important questions on dealing with advance directives in everyday life will be answered in a practice-oriented manner. RESULTS: Among other things, this document answers the question of the conditions under which a patient can refuse or consent to hospitalization and treatment in advance, and in particular how to deal with advance directives whose implementation would also affect the rights of third parties. The German Association for Psychiatry, Psychotherapy and Psychosomatics (DGPPN) has addressed these and other questions in the present document and added practical advice on how to formulate advance directives for people with mental illnesses and how to deal with psychiatric advance directives. DISCUSSION: The DGPPN has developed an advance directive for the area of mental health and published it on its website together with detailed explanations. With the help of this advance directive, people can decide on their treatment in phases of incapacity to consent in the context of a mental crisis or illness.

[Frequency and barriers to the patient advanced directive and lasting power of attorney: findings from a prospective observation study in palliative care services]. / Häufigkeit und Barrieren bei Patientenverfügung und Vorsorgevollmacht: Erkenntnisse aus einer prospektiven Observationsstudie im palliativmedizinischen Dienst.

BACKGROUND: The advance directive and lasting power of attorney are instruments to strengthen patients' autonomy. A hospital-based palliative care consultation service can advise patients and family members about these instruments. This study investigates the need for such consultation among patients with life-limiting illness. METHODS: This prospective observational study on intensive and non-intensive care units includes patients with a request for palliative care consultation. Patient-related factors were evaluated for their possible association with the presence or absence of advance directives or power of attorney. In addition, focus group interviews with members of the palliative care consultation team were carried out to identify barriers which prevent patients from drawing up such documents. RESULTS: A total of 241 oncological and 53 non-oncological patients were included with a median age of 67 years; 69 (23%) patients were treated in the intensive care unit (ICU). Overall, 98 (33%) patients had advance directives, and 133 (45%) had determined a legal health care proxy in advance. A total of 52 patients died in hospital (17.7%). Only age and relationship status were associated with directives. In interviews, the following barriers were identified: information deficit, concern regarding discontinuation of treatment, loss of autonomy and wish to avoid a burden for the family. CONCLUSION: The majority in this severely ill patient population lack advance directives. In order to remove barriers, more effective information and counseling is required about such directives. In particular, guidance should include potential clinical situations in which such directives are potentially beneficial.

Patient perspectives on informed consent for medical AI: A web-based experiment.

Objective: Despite the increasing use of AI applications as a clinical decision support tool in healthcare, patients are often unaware of their use in the physician's decision-making process. This study aims to determine whether doctors should disclose the use of AI tools in diagnosis and what kind of information should be provided. Methods: A survey experiment with 1000 respondents in South Korea was conducted to estimate the patients' perceived importance of information regarding the use of an AI tool in diagnosis in deciding whether to receive the treatment. Results: The study found that the use of an AI tool increases the perceived importance of information related to its use, compared with when a physician consults with a human radiologist. Information regarding the AI tool when AI is used was perceived by participants either as more important than or similar to the regularly disclosed information regarding short-term effects when AI is not used. Further analysis revealed that gender, age, and income have a statistically significant effect on the perceived importance of every piece of AI information. Conclusions: This study supports the disclosure of AI use in diagnosis during the informed consent process. However, the disclosure should be tailored to the individual patient's needs, as patient preferences for information regarding AI use vary across gender, age and income levels. It is recommended that ethical guidelines be developed for informed consent when using AI in diagnoses that go beyond mere legal requirements.

Four shades of paternalism in doctor-patient communication and their ethical implications.

The present study aims to explore the forms paternalistic communication can take in doctor-patient interactions and how they should be considered from a normative perspective. In contemporary philosophical debate, the problem with paternalism is often perceived as either undermining autonomy (the autonomy problem) or the paternalist viewing their judgment as superior (the superiority problem). In either case, paternalism is problematized mainly in a general, theoretical sense. In contrast, this paper investigates specific doctor-patient encounters, revealing distinct types of paternalistic communication. For this study, I reviewed videorecorded encounters from a Norwegian hospital to detect paternalism-specifically, doctors overriding patients' expressed preferences, presumably to benefit or protect the patients. I identified variations in paternalistic communication styles-termed paternalist modes-which I categorized into four types: the fighter, the advocate, the sympathizer, and the fisher. Drawing on these findings, I aim to nuance the debate on paternalism. Specifically, I argue that each paternalist mode carries its own normative implications and that the autonomy and the superiority problems manifest differently across the modes. Furthermore, by illustrating paternalism in communication through real-life cases, I aim to reach a more comprehensive understanding of what we mean by paternalistic doctors.

The health communication orientations scale: Development and two-country validation of a questionnaire that measures health communication style preferences.

OBJECTIVE: Self-Determination Theory posits that everyone has a basic need for autonomy that needs to be fulfilled to establish autonomous motivation for health behavior (change). Regardless, individual differences exist in health communication style preferences. This paper outlines the development and validation of the Health Communication Orientations Scale (HCOS), a new measure to assess these preferences. METHODS: Nationally representative online panels from the US (n = 603) and the Netherlands (n = 737) completed a survey containing the HCOS, established motivational measures, and demographic questions. RESULTS: Factor analyses identified five subscales valid for both populations: HCOS (1) Expert, (2) Others, (3) Self, (4) Oppositional, and (5) Internet. Scores for Expert and Internet were higher in the US sample; Others, Self, and Oppositional were higher in the Dutch sample. Internal reliability for the five factors was high across samples (range 0.84-0.91). Many significant correlations with established measures were observed in both samples indicating the construct validity of the scale. CONCLUSION: The HCOS subscales have strong psychometric properties. PRACTICE IMPLICATIONS: The HCOS represents a novel approach to assessing communication style preferences for general and patient populations. Further investigation in how the HCOS may be used to tailor health messaging is warranted.

A multicenter randomized controlled feasibility trial of a digital self-management intervention for adults with epilepsy.

OBJECTIVE: Self-management interventions may enhance health-related quality of life (HRQoL) in epilepsy. However, several barriers often impair their implementation in the real world. Digital interventions may help to overcome some of these barriers. Considering this, the Helpilepsy Plus Prototype was developed as a prototype smartphone-delivered self-care treatment program for adults with epilepsy. METHODS: The 12-week Helpilepsy Plus Prototype was evaluated through a randomized controlled feasibility trial with a waiting-list control (WLC) group. Outcome measurement at baseline and at 12 weeks assessed adherence to the prototype intervention and changes in epilepsy-related outcomes. The primary endpoint was patient autonomy measured with EASE, and secondary endpoints included HRQoL measured with QOLIE-31, health literacy measured with HLQ, anxiety, and depression symptoms measured with HADS. Semi-structured interviews were conducted with a heterogeneous sample of participants to assess user-friendliness and usefulness. The prototype program was delivered through the Neuroventis Platform (Neuroventis, BV, Overijse, Belgium), a certified medical device (under EU/MDD Class I, and EU/MDR grace period). RESULTS: Ninety-two patients were included (46 in the intervention group, 46 in WLC). Most participants (63%, 58/92 women, median age 30 years) had pharmacoresistant epilepsy (61%, 56/92). Only 22% of participants (10/46) in the intervention group completed at least half of all intervention sessions. No significant differences between the intervention group and WLC were observed. Although there was a larger proportion of patients in the intervention group with meaningful improvements in HRQoL compared to WLC (19/46 versus 11/46), the difference was not significant (p = 0.119). Qualitative feedback showed that participants would appreciate more personalization, such as adaptation of the content to their current epilepsy knowledge level, a more interactive interface, shorter text sections, and interaction through reminders and notifications. SIGNIFICANCE: Digital interventions should allow sufficient scope for personalization and interaction to increase patient engagement and enable benefits from self-care apps. Feedback loops allow the participatory development of tailored interventions. PLAIN LANGUAGE SUMMARY: In this study, we investigated the effectiveness of an app-based self-help intervention. Study participants were either randomly assigned to a group that had access to the app or a group that received access to the app after the end of the study. Although a larger proportion of participants in the intervention group showed a relevant improvement in quality of life, the difference between the two groups was not statistically significant. Less than one-fifth of participants in the intervention group attended at least half of all intervention sessions; patient feedback showed that patients required more personalization and interactive options.

Patient-centered respectful maternity care: a factor analysis contextualizing marginalized identities, trust, and informed choice.

BACKGROUND: Increasing rates of maternal mortality and morbidity, coupled with ever-widening racial health disparities in maternal health outcomes, indicate that radical improvements need to be made in the delivery of maternity care. This study explored the provision of patient-centered maternity care from the perspective of pregnant and postpartum people; experiences of respect and autonomy were examined through the multi-dimensional contexts of identity, relational trust, and protection of informed choices. METHODS: We conducted primary data collection among individuals who experienced a pregnancy in the five years preceding the survey (N = 484) using the validated Mothers on Respect Index (MORi) and Mothers Autonomy in Decision Making (MADM) scale. We conducted an exploratory factor analysis (EFA) which produced three factor variables: trust, informed choice, and identity. Using these factor variables as dependent variables, we conducted bivariate and multivariate analysis to examine the relationship between these factor variables and social marginalization, as measured by race, disability, justice-involvement, and other social risk factors, such as food and housing insecurity. RESULTS: Results of our bivariate and multivariate models generally confirmed our hypothesis that increased social marginalization would be associated with decreased experiences of maternity care that was perceived as respectful and protective of individual autonomy. Most notably, AI/AN individuals, individuals who are disabled, and individuals who had at least one social risk factor were more likely to report experiencing identity-related disrespect and violations of their autonomy. CONCLUSIONS: In light of the findings that emphasize the importance of patient identity in their experience in the healthcare system, patient-centered and respectful maternity care must be provided within a broader social context that recognizes unequal power dynamics between patient and provider, historical trauma, and marginalization. Provider- and facility-level interventions that improve patient experiences and health outcomes will be more effective if they are contextualized and informed by an understanding of how patients' identities and traumas shape their healthcare experience, health-seeking behaviors, and potential to benefit from clinical interventions and therapies.

Anesthesia Approach to Managing Severe Hemorrhagic Shock and Anemia With Non-transfusion Alternatives in a Practicing Jehovah's Witness: A Case Report.

Traumatic hemorrhagic shock is a common yet life-threatening occurrence across the United States and is typically managed with blood transfusions as the standard of care. However, providers caring for a Jehovah's Witness patient who refuses transfusions due to religious reasons face unique ethical challenges in upholding evidence-based shock resuscitation protocols while respecting the patient's autonomy and faith-based stance that strictly prohibits blood products. We present a complex clinical case of a 46-year-old Jehovah's Witness who developed severe hemorrhagic shock, partial amputation, and critical anemia after a traumatic 40-mile-per-hour motorcycle collision resulting in comminuted fractures and arterial disruption. Despite receiving emergent blood transfusions initially, further transfusions were declined once his identity as a practicing Jehovah's Witness was disclosed. His hemoglobin plunged to dangerously low levels of 4.6 g/dL before stabilizing to 5.3 g/dL with pharmaceutical alternatives including intravenous iron, high-dose erythropoietin, and phlebotomy minimization. Respecting patient convictions while delivering effective evidence-based shock management created significant ethical conflicts given the proven efficacy of blood transfusions. However, this complex case demonstrates that through meticulous medical and surgical care coordinated by a multi-disciplinary team applying customized non-transfusion techniques, traumatic hemorrhagic shock and life-threatening anemia can still achieve favorable outcomes without relying on transfusions when respecting faith-based refusal of blood products.

'Sit down and thrash it out': opportunities for expanding ethics consultation during conflict resolution in long-term care.

OBJECTIVE: To identify the frequency and nature of care conflict dilemmas that United States long-term care providers encounter, response strategies, and use of ethics resources to assist with dispute resolution. DESIGN: An online cross-sectional survey was distributed to the Society for Post-Acute and Long-Term Care Medicine (AMDA). RESULTS: Two-thirds of participants, primarily medical directors, have rejected surrogate instructions and 71% have managed family conflict. Conflict over treatment decisions and issues interpreting advance directives were frequently reported. Half of facilities lack a formal dispute mediation policy. Only five respondents have called an ethics consult for assistance. CONCLUSION: Ethically tense care conflicts commonly arise in long-term and post-acute care facilities. Few facility procedures incorporate ethics resources into actual practice. Recommendations are made to create actionable policy, increase access to ethics services, and support staff skill development in order to improve the end-of-life care experiences for patients, families, and care facility staff.

"The great escape": how an incident of elopement gave rise to trauma informed palliative care for a patient experiencing multiple disadvantage.

BACKGROUND: This case report from Scotland, UK illustrates how unresolved traumatic experiences across the life course can affect a patient's engagement with palliative care and offers insights into the flexibility and adaptations necessary for taking a trauma informed approach to care for an individual experiencing multiple disadvantage. Trauma informed care is a cornerstone in the pursuit of equitable palliative care, particularly for those facing multiple disadvantage, as it acknowledges the impact of past traumas on current healthcare experiences, and fosters an environment of understanding, acceptance, and tailored support to alleviate suffering in the final stages of life. CASE PRESENTATION: "M" was a veteran with a history of homelessness, living with end stage anal cancer and symptoms consistent with post-traumatic stress disorder, although he never received a formal diagnosis. M exhibited complex behaviours perceived to be related to his history of trauma, including his decision to elope from the hospice, reluctance to accept personal care from nurses, and unpredictability. These behaviours posed a significant challenge to his palliative care team, both in the hospice and at home. An individualised and flexible approach to care delivery was eventually adopted, which included a 'safety-netting' approach and care delivery outside of the hospice. M was ultimately supported to remain at home until a week before he died. CONCLUSION: M's case underscores the necessity of adopting a trauma informed approach to palliative care, particularly for patients with a history of trauma and multiple disadvantage. The case highlights the importance of understanding and respecting a patient's past traumas, promoting safety and autonomy, and ensuring flexibility in care delivery.

"But I Have a Pacer There Is No Point in Engaging in Hypothetical Scenarios": A Non-Imminently Dying Patient's Request for Pacemaker Deactivation.

In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker-a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal discomfort and a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying.

Respecting patient autonomy: legal and professional considerations.

In this month's Policy column, Iwan Dowie explores patient autonomy - a concept largely embedded within the community nursing setting. Through legal cases, a history of laws relating to patient autonomy are presented and its implications for community nurses discussed.

Culturally competent respect for the autonomy of Muslim patients: fostering patient agency by respecting justice.

Although Western biomedical ethics emphasizes respect for autonomy, the medical decision-making of Muslim patients interacting with Western healthcare systems is more likely to be motivated by relational ethical and religious commitments that reflect the ideals of equity, reciprocity, and justice. Based on an in-depth cross-cultural comparison of Islamic and Western systems of biomedical ethics and an assessment of conceptual alignments and differences, we argue that, when working with Muslim patients, an ethics of respect extends to facilitating decision-making grounded in the patient's justice-related customs, beliefs, and obligations. We offer an overview of the philosophical contestations of autonomy-enhancing practices from the Islamic tradition of biomedical ethics, and examples that demonstrate a recommended shift of emphasis from an autonomy-centered to a justice-focused approach to culturally competent agency-promotion.

Access, autonomy, and affordability: ethical and human rights issues surrounding multigene panel testing for cancer in Japan and Switzerland.

Introduction: Advancements in precision medicine and genomics have led to prospects in a wide range of clinical fields, including oncology. In particular, developments in next-generation sequencing multigene panel tests have led to the possibility of tailoring treatment to the specific genomic markers of a patient's cancer. However, findings from current literature suggest that the path to implementation and uptake of genomic medicine is not without uncertainties and challenges. Methods: To better understand the current challenges to the implementation of genomic medicine services, we investigated the current state of patient access to genomic medicine in Japan and Switzerland. In this investigation, we focused on equal access, patient autonomy, and healthcare affordability. Results: Results have shown that although multigene panel testing is in principle covered by health insurance in both countries, barriers exist in terms of where the tests are available, comprehensive information for patients, and the affordability of not only the test itself but the overall process from diagnosis to treatment. Discussion: These results suggest a need to continue examining a more diverse range of clinical landscapes for genomic medicine to reveal more nuanced understandings of barriers to implementation and thus better identify best practices for overcoming them.

Ethics rounds in the ambulance service: a qualitative evaluation.

BACKGROUND: It is a common ethical challenge for ambulance clinicians to care for patients with impaired decision-making capacities while assessing and determining the degree of decision-making ability and considering ethical values. Ambulance clinicians' ethical competence seems to be increasingly important in coping with such varied ethical dilemmas. Ethics rounds is a model designed to promote the development of ethical competence among clinicians. While standard in other contexts, to the best of our knowledge, it has not been applied within the ambulance service context. Thus, the aim of this study was to describe ambulance clinicians' experiences of participating in ethics rounds. METHODS: This was a qualitative descriptive study, evaluating an intervention. Data were collected through sixteen interviews with ambulance clinicians who had participated in an intervention involving ethics rounds. The analysis was performed by use of content analysis. RESULTS: Two themes describe the participants' experiences: (1) Reflecting freely within a given framework, and (2) Being surprised by new insights. The following categories form the basis of the themes; 1a) Gentle guidance by the facilitator, 1b) A comprehensible structure, 2a) New awareness in the face of ethical problems, and 2b) Shared learning through dialogue. CONCLUSION: Incorporating structured ethics rounds seems to create a continuous development in ethical competence that may improve the quality of care in the ambulance service. Structured guidance and facilitated group reflections offer ambulance clinicians opportunities for both personal and professional development. An important prerequisite for the development of ethical competence is a well-educated facilitator. Consequently, this type of ethics rounds may be considered a useful pedagogical model for the development of ethical competence in the ambulance service.

Ethical and legal challenges of medical AI on informed consent: China as an example.

The escalating integration of Artificial Intelligence (AI) in clinical settings carries profound implications for the doctrine of informed consent, presenting challenges that necessitate immediate attention. China, in its advancement in the deployment of medical AI, is proactively engaging in the formulation of legal and ethical regulations. This paper takes China as an example to undertake a theoretical examination rooted in the principles of medical ethics and legal norms, analyzing informed consent and medical AI through relevant literature data. The study reveals that medical AI poses fundamental challenges to the accuracy, adequacy, and objectivity of information disclosed by doctors, alongside impacting patient competency and willingness to give consent. To enhance adherence to informed consent rules in the context of medical AI, this paper advocates for a shift towards a patient-centric information disclosure standard, the restructuring of medical liability rules, the augmentation of professional training, and the advancement of public understanding through educational initiatives.

"I don't have a telephone to the fetus": Clinicians' conceptions of fetal patienthood in maternal-fetal surgery counseling.

RATIONALE: Maternal fetal surgery (MFS) has developed rapidly since the 1960s and centers for fetal diagnosis and therapy (CFDT) have proliferated. As a result, CFDT clinicians have intervened with fetuses through pregnant bodies for decades, yet the patienthood status of the fetus and its implications for the pregnant person's autonomy have been relatively unexamined. OBJECTIVE: Our overall research aims were threefold: (1) to explore how clinicians train for and provide counseling for MFS; (2) to examine how clinicians assess fetal patienthood and its implications; and (3) to understand clinicians' professed needs and their recommendations for education and training for the provision of MFS counseling. This focuses on aim two. METHOD: In this qualitative study, conducted using in-depth interviews, we examined how 20 clinicians from 17 different sites understood fetal patienthood, how that affected their counseling of pregnant patients, and whether they drew on extant ethical frameworks for guidelines. RESULTS: We identified three major themes: 1) Clinicians entered fetal surgery consultations with assumptions about fetal patienthood (frequently informed by beliefs about fetal viability, maternal attachment, and disciplinary perspectives); 2) they consciously assessed their pregnant patients' connections to their fetus to inform or re-calibrate their own understandings of fetal patienthood; and 3) they used a threshold -based conceptualization whereby the fetus achieved patienthood after crossing a symbolic boundary, often related to the clinician's ability to intervene. CONCLUSIONS: Few clinicians invoked an extant ethical framework to determine fetal patienthood; most asserted that they did not view directive counseling toward MFS as appropriate, instead working diligently to protect pregnant patients' autonomy and rights to self-determination.