A qualitative study of family members' perspectives regarding decision-making for nursing home residents' care.

PURPOSE: We explored how family caregivers perceive decision-making regarding the care of nursing home residents. METHODS: This qualitative study used Flemming's Gadamerian-based research method. In person semi-structured interviews about decision-making concerning residents' care were conducted with 13 family members (nine women, four men) of residents of three Norwegian nursing homes. FINDINGS: The following themes emerged: Excessive focus on autonomy threatens resident wellbeing and safety. Resident wellbeing is the caregiver's responsibility. Resident wellbeing serves as a guiding principle. CONCLUSIONS: The family members of residents and the nursing home caregivers disagreed about the significance of upholding resident autonomy to respect residents' dignity. The family members held that not all instances where residents refused care reflect autonomy situations as care refusal often does not reflect the resident's true values and standards but rather, stems from barriers that render necessary care actions difficult. In situations where residents refuse essential care or when the refusal does not align with the residents second-order values, the family members suggested that caregivers strive to understand the causes of refusal and seek non-coercive ways to navigate it. Hence, the family members seemed to endorse the use of soft paternalism in nursing homes to safeguard residents' wellbeing and dignity.

An "ethics of strangers"? On knowing the patient in clinical ethics.

The shape and function of ethical imperatives may vary if the context is an interaction between strangers, or those who are well acquainted. This idea, taken up from Stephen Toulmin's distinction between an "ethics of strangers" and an "ethics of intimacy", can be applied to encounters in healthcare. There are situations where healthcare personnel (HCP) know their patients (corresponding to an "ethics of intimacy") and situations where HCP do not know their patients (corresponding to "an ethics of strangers"). Does it make a difference for normative imperatives that follow from central concepts and principles in medical ethics whether HCP know their patients or not? In our view, this question has not yet been answered satisfactorily. Once we have clarified what is meant by "knowing the patient", we will show that the distinction is particularly relevant with regard to some thorny questions of autonomy in healthcare (e.g., regarding advance directives or paternalism in the name of autonomy), whereas the differences with regard to imperatives following from the principles of justice and beneficence seem to be smaller. We provide a detailed argument for why knowing the patient is ethically valuable in encounters in healthcare. Consequently, healthcare systems should provide fertile ground for HCP to get to know their patients, and structures that foster therapeutic continuity. For this to succeed, a number of questions still need to be clarified, which is an important task for medical ethics.

To Know Me Is to Exonerate Me: Appeals to Character in Defense of the Willowbrook Hepatitis Study.

The Willowbrook Hepatitis Study is one of the best-known examples of unethical medical research, but the research has always had defenders. One of the more intriguing defenses continually used was that critics did not know the researchers on the study and, therefore, could not assess their ethics. This essay traces the appeal to the researchers' characters across published research and archival sources from the 1960s through today. These appeals reflect the observation as old as Aristotle that one of the most potent modes of persuasion is ethos or character. The specific types of character in these appeals develop out of the paternalistic nature of clinical and research practice in the mid-twentieth century. If the individual physician is the locus of medical judgment, then the physician's character becomes a key concern for bioethics. These appeals still appear and have implications for bioethics in the present day.

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.

[Historical comments on ethics in psychiatry : Challenges in the 19th century]. / Historische Anmerkungen zur Ethik in der Psychiatrie : Herausforderungen im 19. Jahrhundert.

With the emergence of an early psychiatry around 1800, a number of questions arose on dealing with a group of persons whose "alien", irritating and disruptive behavior was considered to be a phenomenon of being sick. In the context of the growing importance of human rights, the term humanitarianism attained a high relevance as the reference for early psychiatrists. Based on historical sources it is shown that despite a multitude of psychiatric beliefs on humanitarianism the established psychiatric practice was dominated by patriarchal order regimes up to the first decade of the twentieth century, later superimposed by the challenges of somatophysiological and experimental research as well as perceptions of biological racism. The associated new ethical questions were partially addressed within psychiatry but did not prevent an increase in the assessment of the mentally ill as "inferior".

Palliative Care in Sub-Saharan Africa: A Narrative Review.

Background: As a person nears the end of their life, culture and ethnicity increasingly drive preferences and priorities for care. Understanding these preferences and priorities is fundamental to health care professionals' goals to respect decision making and support the individual throughout this phase of life. Across Africa, several countries are in the initial stages of implementing palliative care services in their burgeoning health care systems. Moving forward, it is imperative to consider cultural similarities and differences when compared with the Western world, where the field of palliative care evolved, to create a tailored palliative care approach that is consistent with African culture. In palliative care, understanding cultural preferences and priorities requires communication between the patient and the provider and is a crucial step toward a successful implementation in Africa. A paternalistic patient-provider relationship is the current leading model in sub-Saharan Africa.1 Aim: This narrative review explores the prevalence of paternalism and explores its appropriateness and necessity in the current application of palliative care in sub-Saharan African countries. Methods: This narrative review was conducted using four databases as well as hand searching of relevant articles sourced from references of already selected articles. A total of 730 articles were identified. Fourteen articles met the inclusion/exclusion criteria set for this narrative review. Results: In sub-Saharan Africa, the leading patient-provider relationship was determined to be paternalistic. Reasons for this were language, education, cultural norms and expectations, lack of time, and benevolence. Conclusions: The implementation of palliative care often relies on communication of patient desires and goals. Consideration is needed to determine how a provider can appropriately know these factors in a paternalistic relationship.

Refusals and Requests: In Defense of Consistency.

Physicians place significant weight on the distinction between acts and omissions. Most believe that autonomous refusals for procedures, such as blood transfusions and resuscitation, ought to be respected, but they feel no similar obligation to accede to requests for treatment that will, in the physician's opinion, harm the patient (e.g., assisted death). Thus, there is an asymmetry. In this paper, we challenge the strength of this distinction by arguing that the ordering of values should be the same in both cases. The reason for respecting refusals is that, in such cases, autonomy outweighs well-being. We argue that the same should be true in request cases, which means that requests should not be denied only due to the treatment being too harmful in the physician's opinion. Our strategy is to consider and reject a number of arguments for the asymmetrical view, including an appeal to the doing-allowing distinction and positive and negative rights. The duty to respect refusals is still greater than the duty to grant requests on our view, but, by arguing that the ordering of values is the same in both cases, we show that there is less of a distinction in healthcare between requests and refusals than many currently believe.

Challenges Addressing Lung Cancer Screening for Patients With Multimorbidity in Primary Care: A Qualitative Study.

PURPOSE: Many individuals who are eligible for lung cancer screening have comorbid conditions complicating their shared decision-making conversations with physicians. The goal of our study was to better understand how primary care physicians (PCPs) factor comorbidities into their evaluation of the risks and benefits of lung cancer screening and into their shared decision-making conversations with patients. METHODS: We conducted semistructured interviews by videoconference with 15 PCPs to assess the extent of shared decision-making practices and explore their understanding of the intersection of comorbidities and lung cancer screening, and how that understanding informed their clinical approach to this population. RESULTS: We identified 3 themes. The first theme was whether to discuss or not to discuss lung cancer screening. PCPs described taking additional steps for individuals with complex comorbidities to decide whether to initiate this discussion and used subjective clinical judgment to decide whether the conversation would be productive and beneficial. PCPs made mental assessments that factored in the patient's health, life expectancy, quality of life, and access to support systems. The second theme was that shared decision making is not a simple discussion. When PCPs did initiate discussions about lung cancer screening, although some believed they could provide objective information, others struggled with personal biases. The third theme was that ultimately, the decision to be screened was up to the patient. Patients had the final say, even if their decision was discordant with the PCP's advice. CONCLUSIONS: Shared decision-making conversations about lung cancer screening differed substantially from the standard for patients with complex comorbidities. Future research should include efforts to characterize the risks and benefits of LCS in patients with comorbidities to inform guidelines and clinical application.

Challenges in legitimizing further measures against smoking in jurisdictions with robust infrastructure for tobacco control: how far can the authorities allow themselves to go?

BACKGROUND: According to a recently published study, approximately half of those who currently smoke in Norway have little or no desire to quit despite a hostile regulatory and socio-cultural climate for smoking. On this background, we discuss some challenges that regulators will face in a further tightening of structural measures to curb smoking. MAIN BODY: Central to our discussion is the research literature concerned with the concept of state-paternalism in tobacco control-the line between an ethically justified interference with the freedom of those who smoke and an exaggerated infringement disproportionate to the same people's right to live as they choose. In countries with an already advanced infrastructure for tobacco control, this dilemma might become quite intrusive for regulators. We ask that if people, who smoke are aware of and have accepted the risks, are willing to pay the price, smoke exclusively in designated areas, and make decisions uninfluenced by persuasive messages from manufacturers-is a further tightening of anti-smoking measures still legitimate? Strengthening of the infrastructure for tobacco control can be seen as a "help" to people who-due to some sort of "decision failure"-continue to smoke against their own will. However, for those who want to continue smoking for reasons that for them appear rational, such measures may appear unwanted, punitive, and coercive. Is it within the rights of regulators to ignore peoples' self-determination for the sake of their own good? We problematize the "help" argument and discuss the authorities' right to elevate the zero-vision of smoking as universally applicable while at the same time setting up barriers to switching to alternative nicotine products with reduced risk. CONCLUSION: We recommend that a further intensification of smoking control in countries that already have a well-developed policy in this area requires that regulators start to exploit the opportunity that lies in the ongoing diversification of the recreational nicotine market.

The Complex Dynamics of Decision-Making at the End of Life in the Intensive Care Unit: A Systematic Review of Stakeholders' Views and Influential Factors.

A lack of consensus resulting in severe conflicts is often observed between the stakeholders regarding their respective roles in end-of-life (EOL) decision-making in the ICU. Since the burden of these decisions lies upon the individuals, their opinions must be known by medical, judicial, legislative, and governmental authorities. Part of the solution to the issues that arise would be to examine and understand the views of the people in different societies. Hence, in this systematic review, we assessed the attitudes of the physicians, nurses, families, and the general public toward who should be involved in decision-making and influencing factors. Toward this, we searched three electronic databases, i.e., PubMed, CINAHL (Cumulative Index to Nursing & Allied Health), and Embase. A matrix was developed, discussed, accepted, and used for data extraction by two independent investigators. Study quality was evaluated using the Newcastle-Ottawa Scale. Data were extracted by one researcher and double-checked by a second one, and any discrepancies were discussed with a third researcher. The data were analyzed descriptively and synthesized according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Thirty-three studies met our inclusion criteria. Most involved healthcare professionals and reported geographic variations in different timeframes. While paternalistic features have been observed, physicians overall showed an inclination toward collaborative decision-making. Correspondingly, the nursing staff, families, and the public are aligned toward patient and relatives' participation, with nurses expressing their own involvement as well. Six categories of influencing factors were identified, with high-impact factors, including demographics, fear of litigation, and regulation-related ones. Findings delineate three key points. Firstly, overall stakeholders' perspectives toward EOL decision-making in the ICU seem to be leaning toward a more collaborative decision-making direction. Secondly, to reduce conflicts and reach a consensus, multifaceted efforts are needed by both healthcare professionals and governmental/regulatory authorities. Finally, due to the multifactorial complexity of the subject, directly related to demographic and regulatory factors, these efforts should be more extensively sought at a regional level.

Advance directives for oral feeding in dementia: a response to Shelton and Geppert.

In a recent paper in JME, Shelton and Geppert use an approach by Menzel and Chandler-Cramer to sort out ethical dilemmas about the oral feeding of patients in advanced dementia, ultimately arguing that the usefulness of advance directives about such feeding is highly limited. They misunderstand central aspects of Menzel's and Chandler-Cramer's approach, and in making their larger claim that such directives are much less useful than typically presumed, they fail to account for five important elements in writing good directives for dementia and implementing them properly: (1) Directives should be paired with appointment of trusted agents. (2) Appointed agents' authority can be greatly weakened without advance directives to guide them. (3) Directives' implementation does not require clinically precise assessment of dementia's stage. (4) Palliative support is typically required for withholding of oral feeding to be compassionate. (5) The central purpose of stopping feeding is often not the avoidance of suffering but not prolonging unwanted life.

Clinicians' power in the inpatient care of anorexia nervosa: A qualitative investigation of consumer perspectives.

Medically compromised people with anorexia nervosa are cared for in inpatient settings where clinicians closely monitor health and safety. Clinicians are in a position of power, with the capacity to impose mandated weight gain to achieve medical stabilisation. Consumers are in a vulnerable position, compelled to temporarily relinquish autonomy and to accept coercive practices that often diminish the quality of the therapeutic relationship. Clinicians' position of power in mental healthcare has a dual potential for both healing and harm, and limited attention has been given to consumers' views of clinicians' power. The aim of this qualitative descriptive study was to investigate the consumer perspective of clinicians' power in the inpatient care of anorexia nervosa, establishing insight into the beneficence and maleficence of the power asymmetry. Ten women with anorexia nervosa in the community participated in semi-structured interviews online. The COREQ checklist was used to ensure accuracy and completeness of reporting. Thematic analysis revealed that abuses of power were common in the course of inpatient AN care, however life-saving measures were regarded as defensible. The perception of clinicians' power was determined by the strength of interpersonal relationships and clinicians' clinical competence. To mitigate the potential for harmful experiences, clinicians' use of power must be exercised with close consideration for consumer perspectives, with the integration of person-centred care and trauma-informed care principles.

Parenting and family life experiences of mothers diagnosed with schizophrenia within Chinese cultural context.

WHAT IS KNOWN ON THE SUBJECT?: Parenting experiences are a great challenge but also a meaningful achievement for mothers diagnosed with schizophrenia (MDWSs). Most previous studies focused on the parenting experiences of Chinese mothers diagnosed with depression rather than those diagnosed with schizophrenia, who usually experience psychiatric symptoms. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Unlike in Western society, Chinese society is characterised by a family-centred culture. This study insightfully explores MDWSs' parenting and family life experiences addressing their intrapersonal mindsets, interpersonal connections with family members across generations and extrapersonal roles such as traditional social expectations as a mother, wife and daughter-in-law. While Western studies have mainly focused on MDWSs' personal resilience, this study insightfully explored MDWSs' resilient dimensions including their personal, familial and cultural issues within the Chinese society. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: This study develops a comprehensive and professional understanding of the parenting experiences and family interactions of MDWSs who struggle to achieve their motherly role and re-establish connections with intimate family members. The findings highlight the following important considerations when offering family-based nursing cares: (1) assess power relationships, familial dynamics and cultural influences between MDWSs and their family members; (2) extend family members' involvement, such as parents-in-law, while offering psychoeducation to MDWSs and their family members. ABSTRACT: Introduction In Chinese culture, raising the next generation is recognised as a crucial family matter involving intergenerational participation. Mothers diagnosed with schizophrenia (MDWSs) usually experience high stress due to psychiatric symptoms, different parenting values across generations and traditional expectations associated with motherly roles. MDWSs need urgent professional assistance. Aim To explore MDWSs' parenting experiences and family life in Chinese cultural contexts. Method In-depth interviews were conducted with 20 MDWSs. Data were analysed using interpretative phenomenological analyses. Results The superordinate theme was identified as 'You are not a qualified mother'. Three major themes were elicited: experiencing crises in parenting, family life and self-stability; striving to be a good mother and wife under humiliation; and developing wisdom and courage to move forward. Discussion A dehumanised attitude of family members in a paternalistic culture was found. While Western society focuses on personal resilience and family-based nursing care for nuclear families, Chinese society intensively focuses on MDWSs' relationship with nuclear family members as well as extended family members such as parents-in-law. Implications for Practice The results highlighted the significance of culturally sensitive nursing care for MDWSs and family-centred psychoeducation that clarifies familial dynamics and improves effective communication between MDWSs and their family members.

Capacity Reconceptualized: From Assessment Tool to Clinical Intervention.

Capacity evaluation has become a widely used assessment device in clinical practice to determine whether patients have the cognitive ability to render their own medical decisions. Such evaluations, which might be better thought of as "capacity challenges," are generally thought of as benign tools used to facilitate care. This paper proposes that such challenges should be reconceptualized as significant medical interventions with their own set of risks, side effects, and potentially deleterious consequences. As a result, a cost-benefit analysis should be implemented prior to imposing such capacity challenges, and efforts should be made to minimize such challenges in situations where they are unlikely to alter the course of treatment.

Reassessing the VaxTax.

To counter the imbalance in vaccine distribution during the COVID-19 pandemic, Albertsen and more recently Germani et al have suggested a new system of taxation coined as 'VaxTax' that would force higher-income countries to fund the access of low-income and middle-income countries (LMICs) to new vaccines in times of pandemic. I will argue that this idea faces numerous challenges of ethical, sociopolitical and economical nature that may hinder any effort to solve the numerous health challenges that LMICs face. I argue that while it is an interesting idea, it is neither sufficient nor will it ever be easily implemented because of socioeconomic or practical reasons.

Shared decision-making in scaling and root planing.

INTRODUCTION: Estimate proportion of various approaches used by dental hygienists for engaging patients in decisions commonly arising during scaling and root planing. Distribution of approaches was compared across various task components in this procedure, practice experience of dental hygienists and patient compliance. MATERIALS AND METHODS: Survey of graduates from and students in a baccalaureate dental hygiene program. RESULTS: Paternalism (tell then do) and informed consent (give choices and reasons and ask for permission) were more common than shared decision-making (discuss alternatives, solicit patient input and arrive at a mutual decision) and disengagement (patient refusing offered service or avoiding further involvement) by a ratio of 4 to 1 for the first 2 compared with the latter 2. This relationship was held across selecting treatment, procedural adjuncts, homecare instructions and financial arrangements. Dental hygienists exhibited a range of personal preferences for engagement approaches. No-show rate, patient disengagement outside the office, was high (20%). CONCLUSION: Dental hygienists reported using 'more controlled' approaches to engaging patients in decisions regarding treatment. Patients may prefer to engage in more shared decisions and choose this approach by staying away from the office. This may underestimate patients' decisions to stay away from treatment, for example by not showing for completion of the treatment or disregarding homecare routines.

Sharing a medical decision.

During the last decades, shared decision making (SDM) has become a very popular model for the physician-patient relationship. SDM can refer to a process (making a decision in a shared way) and a product (making a shared decision). In the literature, by far most attention is devoted to the process. In this paper, I investigate the product, wondering what is involved by a medical decision being shared. I argue that the degree to which a decision to implement a medical alternative is shared should be determined by taking into account six considerations: (i) how the physician and the patient rank that alternative, (ii) the individual preference scores the physician and the patient (would) assign to that alternative, (iii) the similarity of the preference scores, (iv) the similarity of the rankings, (v) the total concession size, and (vi) the similarity of the concession sizes. I explain why shared medical decisions are valuable, and sketch implications of the analysis for the physician-patient relationship.

Why Health-enhancing Nudges Fail.

Nudges are means to influence the will formation of people to make specific choices more likely. My focus is on nudges that are supposed to improve the health condition of individuals and populations over and above the direct prevention of disease. I point out epistemic and moral problems with these types of nudges, which lead to my conclusion that health-enhancing nudges fail. They fail because we cannot know which choices enhance individual health-properly understood in a holistic way-and because health-enhancing nudges are often themselves bad for our health. They can be bad for our health because they assume inferior agency in their targets and accordingly regularly lead to appropriate resentment and anger-strong emotions which go along with an increased risk of health impairments. Briefly, health-enhancing nudges fail because they are based on persistent ignorance and on a presumptuous attitude.