On subjective measures of decision quality.

In times of person-centered care, it is all the more important to support patients in making good decisions about their care. One way to offer such support to patients is by way of Patient Decision Aids (PDAs). Ranging from patient brochures to web-based tools, PDAs explicitly state the decisions patients face, inform them about their medical options, help them to clarify and discuss their values, and ultimately make a decision. However, lingering discussions surround effectiveness research on PDAs. In this article, I focus on two subjective measures of decision quality that are widely used as outcome measures in effectiveness research on PDAs (i.e., the Decisional Conflict Scale (DCS) and measures of regret). Although these measurement instruments have attracted critical attention in the scientific literature, bioethicists have hardly engaged with them. Therefore, I set myself to analyze the relationship between (the different subscales of) the DCS and measures of regret, on the one hand, and ethical principles such as beneficence and autonomy, on the other hand. In light of that analysis, I will clarify some discussions regarding the use of these measures of decision quality in effectiveness research on PDAs. This should help us to align the way we evaluate PDAs with ethical principles and avoid that our attempts to support patients in making good decisions about their care that is so central to person-centered care point in unethical directions.

Project Inclusive Genetics: Exploring the impact of patient-centered counseling training on physical disability bias in the prenatal setting.

PURPOSE: There is robust research examining the negative impact of racial and socioeconomic implicit bias on healthcare provider clinical decision-making. However, other under-studied important biases are likely to impact clinical care as well. The goal of this study was to explore the presence of bias against people with physical disability among a heterogeneous group of healthcare workers and trainees and to evaluate the effect of implicit association testing and an educational module on this bias. METHOD: The study was composed of a one-hour web-based survey and educational module. The survey included an explicit disability bias assessment, disability Implicit Association Tests (IATs), demographic collection, and pre- and post- module clinical vignettes of prenatal patient scenarios. In addition to providing counseling to hypothetical patients, participants also indicated their personal preferences on genetic testing and termination. The educational module focused on the principles of patient-centered counseling. RESULTS: The collected data reflects responses from 335 participants. Within this sample, there were both explicit and implicit biases towards individuals with physical disabilities. Prior to the IAT and educational module, when respondents were tasked with providing genetic testing recommendations, implicit biases and personal preferences for genetic testing and termination influenced respondents' clinical recommendations. Importantly, having previous professional experience with individuals with disabilities diminished biased clinical recommendations prior to the intervention. In response to the IAT and educational intervention, the effect of implicit bias and personal preferences on clinical recommendations decreased. CONCLUSIONS: This study demonstrates how bias against a marginalized group exists within the medical community and that personal opinions can impact clinical counseling. Importantly, our findings suggest that there are strategies that can be easily implemented into curricula to address disability bias, including formal educational interventions and the addition of professional experiences into healthcare professional training programs.

The Cost of Safety During a Pandemic.

A first-person account of some victims of the virus, the author puts faces and circumstances to the tragedy of the Covid-19 pandemic. Told from a chaplain's point of view, these narratives will take the reader beyond the numbers and ask questions like: What is the cost of keeping families separated at the end of life, and, if patient/family centered care is so central to healthcare these days, why was it immediately discarded? Is potentially saving human lives worth the risk of damaging them beyond repair?

Opioid Management in the Dying Child With Addiction.

The dramatic increases of opioid use and misuse in the past 15 years have resulted in a focus on the responsible and judicious use of opioids. In this Ethics Rounds, the commentators analyze the case of a 16-year-old girl with lymphoma and opioid misuse whose caregiver may have diverted her opioids. She is now at the end of life and prefers to die at home. The commentators, oncologists, palliative care providers, ethicists, and a medical student agree that supporting the patient's goals and practicing good opioid stewardship are not incompatible. They identify additional information that would be required to analyze the case more fully such as the nature of the evidence for misuse and diversion and whether bias inadvertently contributed to these concerns. They agree that multimodal analgesia, including but not limited to opioids, is important. Safeguards could include a contract, directly observed therapy, and/or urine drug screens. Supervision or removal of a caregiver diverting medication or admission of the patient misusing medications would be alternatives if the initial plan was unsuccessful. Such patient-centered care requires well-developed substance misuse treatment, pain management, and home hospice that are adequately reimbursed.

Principles of Clinical Ethics and Their Application to Practice.

An overview of ethics and clinical ethics is presented in this review. The 4 main ethical principles, that is beneficence, nonmaleficence, autonomy, and justice, are defined and explained. Informed consent, truth-telling, and confidentiality spring from the principle of autonomy, and each of them is discussed. In patient care situations, not infrequently, there are conflicts between ethical principles (especially between beneficence and autonomy). A four-pronged systematic approach to ethical problem-solving and several illustrative cases of conflicts are presented. Comments following the cases highlight the ethical principles involved and clarify the resolution of these conflicts. A model for patient care, with caring as its central element, that integrates ethical aspects (intertwined with professionalism) with clinical and technical expertise desired of a physician is illustrated.

Learning Alone or Learning Together: Is It Time to Reevaluate Teacher and Learner Responsibilities?

Medical schools across the United States and Canada constantly consider how to improve their curricula and their pedagogical strategies. The authors found it informative to compare how students in 2 professional schools, medicine and business, are taught. The authors believe that creating the best future physicians requires students and faculty to be physically together to learn essential skills. Increasing student interactions with peers and faculty enhances learning, and the classroom is a natural place for these interactions to take place. Requiring medical students to attend teaching sessions in the preclinical curriculum should help foster their development of core competencies, including critical decision making, clinical reasoning, and patient-centered care.

Beyond Shared Decision Making.

Shared decision making (SDM) is the state of the art for clinicians' communication with patients and surrogate decision makers. SDM involves give and take, in which all parties interact to maximize the autonomy of patients. In this article I summarize the core steps of SDM and explore ways to use it to benefit patients to the greatest extent. I review three articles included in this issue of The Journal of Clinical Ethics that highlight additional approaches we can use to help patients and parents to see what may be in their own or their child's best interest. I describe how these approaches can be used in most other medical fields. I explore ways to share information with patients that are outside the usual scope of SDM. Finally, I discuss how we might look, together with patients, at what all parties are feeling before we begin the process of SDM.

Medical advocacy in the face of Australian immigration practices: A study of medical professionals defending the health rights of detained refugees and asylum seekers.

While medical advocacy is mandated as a core professional commitment in a growing number of ethical codes and medical training programs, medical advocacy and social justice engagement are regularly subordinated to traditional clinical responsibilities. This study aims to provide insight into factors that motivate clinician engagement and perseverance with medical advocacy, so as to inform attempts by policymakers, leaders and educators to promote advocacy practices in medicine. Furthermore, this study aims to provide an analysis of the role of medical advocates in systems where patients' rights are perceived to be infringed and consider how we might best support and protect these medical advocates as a profession, by exploring the experiences and perspectives of Australian clinicians defending the health of detained asylum seekers. In this qualitative study thirty-two medical and health professionals advocating on asylum seeker health in immigration detention were interviewed. Transcripts were coded both inductively and deductively from interview question domains and thematically analysed. Findings suggested that respondents' motivations for advocacy stemmed from deeply intertwined professional and personal ethics. Overall, advocacy responses originated from the union of three integral stimuli: personal ethics, proximity and readiness. We conclude that each of these three integral factors must be addressed in any attempt to foster advocacy within the medical profession. In light of current global trends of increasingly protectionist immigration practices, promoting effective physician advocacy may become essential in ensuring patients' universal right to health.

Benefits and Risks of Visitor Restrictions for Hospitalized Children During the COVID Pandemic.

To control the spread of severe acute respiratory syndrome coronavirus 2, the virus responsible for coronavirus disease 2019, many hospitals have strict visitor restriction policies. These policies often prohibit both parents from visiting at the same time or having grandparents or other family members visit at all. We discuss cases in which such policies created ethical dilemmas and possibly called for compassionate exceptions from the general rules.

More that unites us than divides us? A qualitative study of integration of community health and social care services.

BACKGROUND: The integration of community health and social care services has been widely promoted nationally as a vital step to improve patient centred care, reduce costs, reduce admissions to hospital and facilitate timely and effective discharge from hospital. The complexities of integration raise questions about the practical challenges of integrating health and care given embedded professional and organisational boundaries in both sectors. We describe how an English city created a single, integrated care partnership, to integrate community health and social care services. This led to the development of 12 integrated neighbourhood teams, combining and co-locating professionals across three separate localities. The aim of this research is to identify the context and the factors enabling and hindering integration from a qualitative process evaluation. METHODS: Twenty-four semi-structured interviews were conducted with equal numbers of health and social care staff at strategic and operational level. The data was subjected to thematic analysis. RESULTS: We describe three key themes: 1) shared vision and leadership; 2) organisational factors; 3) professional workforce factors. We found a clarity of vision and purpose of integration throughout the partnership, but there were challenges related to the introduction of devolved leadership. There were widespread concerns that the specified outcome measures did not capture the complexities of integration. Organisational challenges included a lack of detail around clinical and service delivery planning, tensions around variable human resource practices and barriers to data sharing. A lack of understanding and trust meant professional workforce integration remained a key challenge, although integration was also seen as a potential solution to engender relationship building. CONCLUSIONS: Given the long-term national policy focus on integration this ambitious approach to integrate community health and social care has highlighted implications for leadership, organisational design and inter-professional working. Given the ethos of valuing the local assets of individuals and networks within the new partnership we found the integrated neighbourhood teams could all learn from each other. Many of the challenges of integration could benefit from embracing the inherent capabilities across the integrated neighbourhood teams and localities of this city.

What are the links between evidence-based medicine and shared decision-making in training programs for junior doctors? A scoping review protocol.

INTRODUCTION: Patient-centred care is pivotal to clinical practice and medical education. The practice of evidence-based medicine (EBM) and shared decision-making (SDM) are complementary aspects of patient-centred care, but they are frequently taught and reported as independent entities. To effectively perform all steps of EBM, clinicians need to include patients in SDM conversations, however, the uptake of this has been slow and inconsistent. A solution may be the incorporation of SDM into EBM training programmes, but such programmes do not routinely include SDM skills development. This scoping review will survey the literature on the kinds of EBM and SDM educational programmes that exist for recently qualified doctors, programmes that incorporate the teaching of both EBM and SDM skills, as well as identifying research gaps in the literature. METHODS AND ANALYSIS: Literature searches will be conducted in the databases Medline, Embase, Scopus and Cochrane Library. Bibliographies of key articles and their citing references will also be hand-searched and assessed for inclusion. Selected grey literature will be included. Papers must be written in English, or provide English abstracts, and date from 1996 to the present day.Two independent reviewers will screen titles and abstracts, check full texts of selected papers for eligibility and extract the data. Any disagreement will be resolved, and consensus reached, if necessary, with the assistance of a third reviewer. Qualitative and quantitative studies that address educational interventions for either EBM, SDM or both will be included. Data extraction tables will present bibliographic information, populations, interventions, context and outcomes. Data will be summarised using tables and figures and a description of findings. ETHICS AND DISSEMINATION: This review will synthesise information from publicly available publications and does not require ethics approval. The results will be disseminated via conference presentations and publications in medical journals.

Ricoeur's narrative philosophy: A source of inspiration in critical hermeneutic health research.

Patient-centred care has gained ground in health service following a health policy initiative aimed at changing the paternalistic culture towards one with more patient involvement. Development of knowledge relating to people's lived experiences of illness is important in this context. Literature in the field of health science describes methods for exploring what is at stake for people affected by illness, and the French philosopher Paul Ricoeur has been a significant source of inspiration. Especially, Ricoeur's interpretation theory has been construed and applied in different, often schematic, methodological variations, whereas his narrative philosophy is a little used source of inspiration. Health science has been characterized by a biomedical awareness of method and the idea that there is a direct and immediate path to patients' experiences, a viewpoint that can be traced back to Descartes and the philosophy of subjectivism. Opposed to Descartes, Ricoeur says that we are already embedded in a world of traditions and meanings over which we have no control. According to Ricoeur, we leave traces when we express ourselves, and traces are formed by the world of meanings and traditions to which we belong. Often, the sense in the traces is hidden, making it impossible to directly understand individual's experiences. Reflection on an individual's lived experiences must take place via the narratives in which the individual expresses themselves. The centrepiece of Ricoeur's narrative philosophy is the threefold mimesis, which is an approach to understanding the meaning of peoples' lived experiences. The philosophical hermeneutics of Gadamer plays an important role in Ricoeur's theory of interpretation, although he has criticized Gadamer for failing to include one dimension in his philosophy; he finds this dimension in Habermas' ideology critique. Ricoeur's ideology critique is absent in health science research, which is why it has been made a focal point in this article.

Epistemic Injustice: A Philosophical Analysis of Women's Reproductive Health Care in a Somali-American Community.

Epistemology is the study of the grounds of knowledge. We illustrate through case studies how epistemic injustice is manifested in the delivery of reproductive health care services for women from Somalia, even though it may not be intended or recognized as injustice. Testimonial injustice occurs when women are not believed or are discredited in their aim to receive care. Hermeneutic injustice occurs when a significant area of one's social experience is obscured from understanding owing to flaws in group knowledge resources for understanding. For example, women from Somalia may not receive full disclosure about the diagnostic or treatment services that are recommended in the reproductive health care setting. We explore how the many intersections in a person's identity can give rise to epistemic injustice and we suggest more expansive ways of evaluating the validity of diverse epistemologies in patient-centered care. Structural competency is recommended as a way nurses and other health care providers can mitigate the social determinants of health, which contribute to epistemic injustice.

What do patients want? Surgical informed-consent and patient-centered care - An augmented model of information disclosure.

The ideal moral standard for surgical informed-consent calls upon surgeons to carry out a disclosure dialogue with patients so they have as full as possible an understanding of the procedure before they sign the informed-consent form. This study is the first to empirically explore patient preferences regarding disclosure dialogue. Twelve Israelis who underwent life-saving surgeries participated in a narrative study. Three themes emerged from the analysis: objectification of patients, anxiety provoking processes and information, and lack of information that was essential for patients. Findings contribute to existing debates among surgeons regarding the scope and importance of some disclosure components. Analysis led to our formulation of an augmented subjective model of information disclosure that participants prefer, which extends beyond the immediate present of the surgery to the period after discharge, and until return to routine. Surgeons should be aware of patient preferences in disclosure, and gaps between perceptions of surgeons, and preferences and needs of patients.

Preventing conscientious objection in medicine from running amok: a defense of reasonable accommodation.

A US Department of Health and Human Services Final Rule, Protecting Statutory Conscience Rights in Health Care (2019), and a proposed bill in the British House of Lords, the Conscientious Objection (Medical Activities) Bill (2017), may well warrant a concern that-to borrow a phrase Daniel Callahan applied to self-determination-conscientious objection in health care has "run amok." Insofar as there are no significant constraints or limitations on accommodation, both rules endorse an approach that is aptly designated "conscience absolutism." There are two common strategies to counter conscience absolutism and prevent conscientious objection in medicine from running amok. One, non-toleration, is to decline to accommodate physicians who refuse to provide legal, professionally accepted, clinically appropriate medical services within the scope of their clinical competence. The other, compromise or reasonable accommodation, is to impose constraints on accommodation. Several arguments for non-toleration are critically analyzed, and I argue that none warrants its acceptance. I maintain that non-toleration is an excessively blunt instrument to prevent conscientious objection in medicine from running amok. Instead, I defend a more nuanced contextual approach that includes constraints on accommodation.

Ética do cuidado e política: contribuições do legado de Maria de Lourdes Pintasilgo / Ethics of care and politics: contributions from the legacy of Maria de Lourdes Pintasilgo

RESUMO A proposta deste texto tem a função de trazer contribuições da ética do cuidado para práticas da Atenção Básica em Saúde a partir do legado de Maria de Lourdes Pintasilgo (1930- 2004), Primeira Ministra de Portugal, de julho de 1979 a janeiro de 1980. Por meio do registro narrativo, trazem-se aspectos da trajetória de vida dessa política por meio do testemunho de uma importante parceira de luta, acrescido de aportes teórico-documentais, os quais fazem parte do acervo da Fundação Cuidar o Futuro, a qual buscava a melhoria sustentada da qualidade de vida e defesa de direitos básicos. A parlamentar teve expressiva participação política em Fóruns Europeus e das Organizações das Nações Unidas propondo ações que combatessem a desigualdade social e a opressão das mulheres. Inspirada na ética feminista, compreendia o cuidado como a pedra de toque de suas ações. Valorizava as experiências singulares das pessoas e comunidades como principal parâmetro de fortalecimento da participação social e efetividade dos direitos humanos. Por fim, expressava uma forma de fazer política em que o compromisso ético e o respeito consigo mesma, com o outro e com o meio ambiente balizavam seu modo de estar no mundo.

ABSTRACT The purpose of this text is to bring contributions from the ethics of care to the practices of Primary Health Care based on the legacy of Maria de Lourdes Pintasilgo (1930-2004), Prime Minister of Portugal, from July 1979 to January 1980. Through the use of narrative record, aspects of the life trajectory of the politician are brought through the testimony of an important partner in fights, as well as theoretical and documentary contributions, which are part of the Caring for the Future Foundation's collection, which sought sustained improvement of quality of life and the defense of basic rights. The parliamentarian had significant political participation in European and the United Nations Organizations Forums proposing actions that would combat social inequality and the oppression of women. Inspired by feminist ethics, she understood care as the cornerstone of her actions. She valued the unique experiences of people and communities as the main parameter for strengthening social participation and the effectiveness of human rights. Finally, she expressed a way of doing politics in which ethical commitment and respect for oneself, others, and the environment marked her way of being in the world.