Addressing the question of the caregiver’s vulnerability in the care relationship may seem out of place, even illusory. Indeed, the common image of the carer is that of a strong person, unaffected by the patient’s illness and suffering; a person who does not allow to show through the discomfort and unease associated with their activity. The Covid-19 pandemic that has marked our world in recent years has made it abundantly clear that the carer is not a god in a (...) white/blue/pink/purple gown. Everyday experience shows us that the carer, like the patient, can be vulnerable. When caregivers are abandoned to their suffering and their vulnerability is ignored, the impact of such an experience can be detrimental to the care they provide. The aim of this article is to consider the notion of capability as a paradigm for understanding how to deal with caregiver vulnerability. Following this logic, responding to caregivers’ vulnerability means promoting an enabling care environment that enables them to develop their capabilities. The capability approach thus reminds us of the need to take into account the moral and human aspirations of caregivers in medical practice. (shrink)

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical challenges faced by HCPs (...) in these circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (shrink)

Background: The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied. Purpose: This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures. Research design: Using Charles Taylor’s hermeneutic framework, a 2-month (...) focused ethnography with a participatory approach was used. Participants and research context: Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity. Ethical considerations: The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants. Findings: By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures. Discussion: A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability. Conclusion: The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (shrink)

Background: Neglect and abuse of elders in care institutions is a recurring issue in the media. Elders in care institutions are vulnerable due to their physical, cognitive, and verbal limitations. Such vulnerabilities may make them more susceptible to mistreatment by caregivers on whom they are heavily dependent. Objectives: The goal was to understand caregivers’ concerns about ensuring correct and proper treatment, as well as their experiences with neglect and abuse of older patients. This article examines resources and challenges (...) of professional ethics within the care setting. Research design: A study was conducted to explore the quality of care provided to older patients in nursing homes, geriatrics institutions, and ambulant care in the northwest region of Switzerland. Participants and research context: A total of 23 semi-structured interviews were conducted with nursing staff of varying experience levels. Ethical considerations: Ethical approval was granted by the competent regional ethics commission, Ethikkomission Nordwest-und Zentralschweiz EKNZ [Ethics Commission Northwest and Central Switzerland] (2014-015). Findings: Three themes emerged from our data analysis: professional identity, professional context, and professional relationships. Our findings indicate mutual vulnerabilities within these three themes, characterizing the interactions between nursing staff and older patients. Study participants believe that incidences of error, neglect, and abuse are consequences of their own vulnerability since they are not able to meet the demands of an overstraining work situation. Discussion: Different aspects of this mutual vulnerability are described and critically discussed as challenges for professional ethics. Conclusion: Early education, continuous training as well as better management and response from the institution are necessary to maintain professionalism while handling mutual vulnerabilities. (shrink)

In the early twenty-first century, we stand on the threshold of welcoming robots into domains of human activity that will expand their presence in our lives dramatically. One provocative new frontier in robotics, motivated by a convergence of demographic, economic, cultural, and institutional pressures, is the development of “carebots”—robots intended to assist or replace human caregivers in the practice of caring for vulnerable persons such as the elderly, young, sick, or disabled. I argue here that existing philosophical reflections on the (...) ethical implications of carebots neglect a critical dimension of the issue: namely, the potential moral value of caregiving practices for caregivers. This value, I argue, gives rise to considerations that must be weighed alongside consideration of the likely impact of carebots on care recipients. Focusing on the goods internal to caring practices, I then examine the potential impact of carebots on caregivers by means of three complementary ethical approaches: virtue ethics, care ethics, and the capabilities approach. Each of these, I argue, sheds new light on the contexts in which carebots might deprive potential caregivers of important moral goods central to caring practices, as well as those contexts in which carebots might help caregivers sustain or even enrich those practices, and their attendant goods. (shrink)

Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. Methods 28 semi-structured interviews were conducted with 32 family caregivers and (...) one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. Results Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver. Conclusions Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics. (shrink)

Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to their dignity being threatened. Moreover, dignity is an abstract concept and there is no studies done on teenagers’ dignity in the final stages of life available in Iran.Purpose: The purpose of this study is to describe the caregivers’ experiences regarding teenagers’ dignity in the final stages (...) of life.Research design: This study is a descriptive phenomenological qualitative research project. The data was collected using deep individual and semi-structured interviews as well as taking notes. The Colaizzi analysis method was used to analyze the data.Participants and research context: 22 caregivers working with teenagers in the final stages of life in a public health centers in Iran who had the criteria to enter the study were selected using a purposeful sampling method and invited to join the study from August 2018 to June 2019. The sampling continued until data saturation.Findings: The findings of the present study were presented in the form of three main themes including “private,” “respecting individual identity,” and “attention to teenagers’ needs” and an additional eight categories.Ethical Considerations: The study’s protocol was approved by the Research Ethics Committee of the Shiraz University of Medical Sciences and all ethical principles were followed throughout the study.Discussion and conclusion: Based on the present study from the caregivers’ point of view, teenagers in their final stages of life required to be cared for and taught in an environment that their privacy was maintained and their individual identity was respected as well as getting attention from the caregivers and companions. In such situations, the teenagers felt calm and their dignity was maintained; therefore, providing a cultural, professional, and organizational setting where all the components of maintaining dignity in teenagers are supported and prioritized is necessary. (shrink)

Background Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. Aim This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. Research design and participants This exploratory (...) study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer’s philosophical hermeneutics. Ethical considerations Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. Results The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. Conclusion and final considerations The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices. (shrink)

Hojjat Soofi successfully developed a novel dementia-specific model of human flourishing.1 Based on a modified version of Nussbaum’s account of dignity (ie, the theoretical framework of the capabilities approach), and integrated with Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia (ie, the field of empirically informed ethics), this model provides guidance on how to actually care for people with dementia in real-life practices, according to the moral requirements of respect for dignity. More specifically, (...) we deem the contributive value of the model to be threefold. (1) It is a successful specification and contextualisation of Nussbaum’s original list of capabilities in the context of dementia care. (2) The table clearly distinguishes between dementia-specific capabilities and their possibly dementia-related progressive deprivation (ie, the internal conditions), and the possible external setbacks or facilitators for human flourishing. (3) The model is proposed as being open to include new and additional insights from further empirical research on what forms of caregiving do (or do not) align with respect for the dignity of people with dementia. In our commentary, we want to focus on the source of dignity, that is, the locus and starting point of our moral requirements on which the author takes an explicit stance. First of all, by being founded on the list of dementia-specific capabilities, Soofi’s model places the source of our moral requirements of respect for the dignity of people with dementia within the persons themselves, ‘having some of the basis capabilities listed’ (p.6). This, in turn, brings classic discussions concerning a …. (shrink)

End-of-life issues and questions are complex and frequently cause confusion and anxiety. In _Death with Dignity_,_ _theologian, medical ethicist, and pastoral caregiver Peter A. Clark examines numerous issues that are pertinent to patients, family members, and health care professionals, including physiology, consciousness, the definition of death, the distinction between extraordinary and ordinary means, medical futility, “Do Not Resuscitate” orders, living wills, power of attorney, pain assessment and pain management, palliative and hospice care, the role of spirituality in end-of-life (...) care, and physicians’ communication with terminal patients. Patients, family members, medical students, and health care professionals will find in _Death with Dignity _the_ _practical and ethical knowledge they need to capably and confidently cope with end-of-life challenges. (shrink)

BackgroundBurn patients are among the most vulnerable groups of patients requiring principled ethical care. Caring for these patients often brings various ethical challenges for the members of the health care teams, especially nurses, which affect the clinical decisions made for these patients. A limited number of studies have addressed the ethical challenges of caring for burn patients for the responsible caregivers, so the present study attempted to identify these challenges. The present study aimed to explore the health professionals' (...) experiences of the ethical challenges during caring for burn patients.MethodsThis was a qualitative study with a descriptive, phenomenological design. 22 health professional practiced in public burn centers in Iran who met the inclusion criteria of the study were selected via purposeful sampling to participate in the study from June to August 2019. Data were collected using semi-structured, in-depth interviews with the individuals as well as field notes. Sampling was continued up to the data saturation. Thereafter, the collected data were analyzed using Colaizzi's method.ResultsThe findings of the study yielded 3 themes, including respect for the patient's privacy, respect for the patient's personal identity, and care challenges, as well as 9 categories.ConclusionThe findings of this study showed that the burn patients’ caregivers face some challenges in the domains of maintaining the patient's privacy, respecting the patient’s personal identity, and making the best clinical decision. Thus, providing the cultural, professional, and organizational requirements of meeting the challenges of caring for burn patients can consequently result in the caregivers’ inner peace and the improved performance. (shrink)

Meeting the needs of individuals who experience vulnerability due to cognitive impairment presents significant challenges to caregivers. Primary caregiver responsibility is often relegated to professionals in hospitals or long-term care facilities, while proxy decision-making responsibility lies with families. The complex relationship among patients, professional caregivers, and families may be further complicated by the relative cognitive capacity of different patients. While some experience diminished cognitive capacity to such an extent that they cannot make any informed voluntary decisions, others may be (...) able to express global preferences and participate more actively in rehabilitative efforts. With reference to Catholic social teaching, I briefly establish the intrinsic dignity of human persons who experience cognitive impairment and then analyze how the web of relationships and responsibilities among patients, professional caregivers, families, and communities ought to be defined. Finally, I consider how these relationships may be optimized to enhance participation in mutually reinforced caregiving and decision making. (shrink)

Patient-centered care is now recognized as a clinical method and ideal model for patient – health professional relationships, and many definitions have influenced its evolution. Overall the patient-centered care literature has provided relatively little to define patient-centered care at the level of the patient-professional relationship. Additionally, patient-centered care lacks grounding in ethical theory. This thesis asserts that theoretical concepts from the ethics of care can provide a stronger conceptual basis for patient-centered care.This thesis begins (...) with a critical interpretive review of the patient-centered care literature, yielding 12 articles that previously introduced new theoretical and definitional work on patient-centered care and patient-centered communication. Six common themes and ideas were discovered, and include Engaging the Patient as a Whole Person, Recognizing and Responding to Emotions, Fostering a Therapeutic Alliance, Promoting an Exchange of Information, Sharing Decision Making, and Enabling Self-Management and Patient Navigation. These elements were then compared to key elements of the ethics of care. This thesis argues that feminists have good reason to consider care as a type of moral duty, and it describes how this duty functions. This thesis also argues that a duty to care is triggered when caregivers are presented with particular substantive forms of vulnerability. Specifically, this thesis argues that vulnerable subjects whose constitutive needs are at risk require particular moral obligations. The links between the ethics of care and patient-centered care are discussed, including how an ethics of care response ought to function in the health care context. Finally, the cases of J.J. and Makayla Sault, two aboriginal girls who refused chemotherapy in favour of traditional aboriginal healing practices, are analyzed. This thesis offers a short scoping review of the bioethics discourse surrounding these cases. A review of this discourse revealed several common themes, which included the peripheral importance of culture and history, the equating of best interests with survival, the supremacy of science-based medicine, and the impartial application of ethical principles. This thesis recommends that health care professionals apply an ethics of care approach to similar ethical dilemmas in the future, which involves shifting one's ethical focus to the central relationships of the case, understanding the unique perspective of the patient's narrative, and promoting a care-based rather than a justice-based approach to problem-solving. (shrink)

How do we theorize the experiences of caregivers abused by their children with autism without intensifying stigma toward disability? Eva Kittay emphasizes examples of extreme vulnerability to overturn myths of independence, but she ignores the possibility that dependents with disabilities may be vulnerable and aggressive. Instead, her work over-emphasizes caregivers' capabilities and the constancy of disabled dependents' vulnerability. I turn to Judith Butler's ethics and her conception of the self as opaque to rethink care amid conflict. Person-centered planning approaches, (...) pioneered by disability rights activists, merge Butler's analysis of opacity with Kittay's work on embodied care, while also inviting a broader network of people to both interpret needs and change communities. By expanding our conceptions of dependency, feminist disability studies can continue the aim of both Kittay and Butler: to humanize unintelligible lives. (shrink)

Emergency departments in many nations worldwide have been struggling for many years with crowding and the subsequent provision of care in hallways and other unconventional spaces. While this issue has been investigated and analyzed from multiple perspectives, the ethical dimensions of the place of emergency department care have been underexamined. Specifically, the impacts of the place of care on patients and their caregivers have not been robustly explored in the literature. In this article, a feminist ethics and (...) human geography framing is utilized to argue that care provision in open and unconventional spaces in the emergency department can be unethical, as vulnerability can be amplified by the place of care for patients and their caregivers. The situational and pathogenic vulnerability of patients can be heightened by the place of the emergency department and by the constraints to healthcare providers’ capacity to promote patient comfort, privacy, communication, and autonomy in this setting. The arrangements of care in the emergency department are of particular concern for older adults given the potential increased risks for vulnerability in this population. As such, hallway healthcare can reflect the normalized inequities of structural ageism. Recommendations are provided to address this complicated ethical issue, including making visible the moral experiences of patients and their caregivers, as well as those of healthcare providers in the emergency department, advocating for a systems-level accounting for the needs of older adults in the emergency department and more broadly in healthcare, as well as highlighting the need for further research to examine how to foster autonomy and care in the emergency department to reduce the risk for vulnerabilities. (shrink)

By their very nature, overseas medical missions (and even domestic medical charities such as free clinics ) are designed to serve vulnerable populations. If these groups were capable of protecting their own interests, they would not need the help of medical volunteers: their medical needs would be met through existing government health programs or by utilizing their own resources. Medical volunteerism thus seems like an unfettered good: a charitable activity provided by well-meaning doctors and nurses who want to give of (...) their time, skills, and resources to help those who would not otherwise be able to take care of their medical needs. In this article, I argue that if medical volunteerism is to be good, however, it must always meet certain basic ethical requirements. These requirements may be (and perhaps often are) overlooked in the rush to organize and carry out short-term medical missions. I illustrate my point with special reference to short-term medical missions designed to provide surgical repair of obstetric vesico-vaginal fistula, a condition in which the tissues that normally separate the bladder from the vagina are destroyed by obstetric trauma, leading to continuous and unremitting incontinence in the affected woman. (shrink)

BackgroundIn our globalizing world, caregivers are increasingly being confronted with the challenges of providing intercultural healthcare, trying to find a dignified answer to the vulnerable situation of ethnic minority patients. Until now, international literature lacks insight in the intercultural care process as experienced by the ethnic minority patients themselves. We aim to fill this gap by analysing qualitative literature on the intercultural care encounter in the hospital setting, as experienced by ethnic minority patients.MethodsA systematic search was conducted for (...) papers published between 2000 and 2015. Analysis and synthesis were guided by the critical interpretive synthesis approach.ResultsFifty one articles were included. Four dimensions emerged, describing the intercultural care encounter as a meeting of two different cultural contexts of care, in a dynamic and circular process of balancing between the two cultural contexts, which is influenced by mediators as concepts of being human, communication, family members and the hospital’s organizational culture.ConclusionsThis review provides in-depth insight in the dynamic process of establishing intercultural care relationships in the hospital. We call for a broader perspective towards cultural sensitive care in which patients are cared for in a holistic and dignity-enhancing way. (shrink)

In pediatric critical care, nurses are the primary caregivers for critically ill children and are particularly vulnerable to moral distress. There is limited evidence on what approaches are effective to minimize moral distress among these nurses. To identify intervention attributes that critical care nurses with moral distress histories deem important to develop a moral distress intervention. We used a qualitative description approach. Participants were recruited using purposive sampling between October 2020 to May 2021 from pediatric critical care (...) units in a western Canadian province. We conducted individual semi-structured interviews via Zoom. A total of 10 registered nurses participated in the study. Four main themes were identified: (1) “I’m sorry, there’s nothing else”: increasing supports for patients and families; (2) “someone will commit suicide”: improving supports for nurses: (3) “Everyone needs to be heard”: improving patient care communication; and (4) “I didn’t see it coming”: providing education to mitigate moral distress. Most participants stated they wanted an intervention to improve communication among the healthcare team and noted changes to unit practices that could decrease moral distress. This is the first study that asks nurses what is needed to minimize their moral distress. Although there are multiple strategies in place to help nurses with difficult aspects of their work, additional strategies are needed to help nurses experiencing moral distress. Moving the research focus from identifying moral distress towards developing effective interventions is needed. Identifying what nurses need is critical to develop effective moral distress interventions. (shrink)

Illness and hospitalization are sources of vulnerability; they arguably endow nurses and midwives with the moral obligation to develop caring relationships with patients. Fairness and the equal treatment of patients are central to moral practice; current government publications are giving this political emphasis. This article argues that patient partiality is one factor that may result in insidiously unequal caregiving. Data generated during a qualitative study into professional caring suggest that patient partiality is an accepted part of everyday practice. Factors such (...) as the patient’s personality, nurse-patient familiarity and the perceived level of patients’ understanding and interest in their illness emerged as possible sources of partiality and influence on practitioners’ interactions with patients. The article argues that patient partiality can be managed morally if practitioners develop self-awareness and constantly reflect on the moral integrity of everyday practice. Throughout the article, unless it is stated that specific reference is being made to either nurses or midwives, reference to a nurse or practitioner denotes both. It is also emphasized that no implication is intended that any study participants provided unequal care. Rather, data are utilized solely to generate focused discussion around the concept of patient partiality. (shrink)

Many experimental brain-computer interfaces (BCIs) are currently being medically tested in paralyzed patients. While the new generations of implantable BCIs move rapidly ahead at trying to increase the patients’ well-being, ethical concerns about their potential effects on patients’ psychological dimensions (e.g. sense of agency and control) are growing. An important ethical concern to explore is how BCIs may introduce unprecedented vulnerabilities to implanted individuals.Our chapter shows that, on the one hand, BCIs can empower the sense of self and control, which (...) contribute to well-being. On the other hand, they can introduce unprecedented vulnerabilities, for example, by inducing radical distress, feelings of loss of control, and a rupture of patient identity, which decrease one’s well-being. To investigate a possible solution to this problem we propose to understand the implementation of a BCI system in one’s body through the capability approach. This calls for a careful ethical examination of new morally salient issues prior to seeing an increase in BCI-related psychological effects in an open market. (shrink)

The long-running discourse on respect for human dignity and autonomy in the physician-patient relationship pertaining to persons with dementia (PwDs) is explored deeply in this paper through the use of a real-life case, to highlight the complex interplay between autonomy and best interest when it comes to a PwD's experiential and critical interests. Many scenarios and perspectives are described and applies to the case. However, there are a few perspectives, which are touched upon that could do with further scrutiny. Firstly, (...) it has been argued that rigid adherence to the advance directives of PwDs means that PwDs will be the only people who are not allowed to ever change their minds. This withdrawal of a fundamental freedom hardly accords with respect for human dignity, or for any residual autonomy that these individuals may still enjoy. Secondly, viewing this case through the lens of care ethics, and incorporating the recently proposed conceptual framework of anthropological vulnerability, may reveal valuable insights regarding care provision and caring physician-patient relationships. These perspectives would analyse the role of relational ontology, particularly in relation to significant others, significant communities, and caregivers. (shrink)

고령화 사회와 4차 산업혁명 시대를 맞아 인류 사회는 다른 사회구성원에게 의존적인 존재의 비율이 높아지는 상태를 맞닥뜨리게 될 것이다. 기존의 계약론적 접근은 사회협력과 기여의 능력이 있는 온전한 존재를 중심으로 정의문제를 논한다고 여겨져 왔다. 최근 이에 대한 도전으로서 누스바움의 역량접근법과 키테이의 돌봄 윤리가 제시된다.BR 나는 이 글에서 그들이 비판하는 계약론을 롤즈의 것을 중심으로 개괄하고 그에 대한 누스바움의 비판과 대안, 키테이의 비판과 대안 각각을 논할 것이다. 그러고 나서 그들이 비판하는 롤즈의 계약론의 주요 개념에 대한 오해를 해소하고, 더 나아가 몇몇 개념에 대한 재해석과 확장을 (...) 제안함으로써 롤즈적 계약론이 고령화, 복지 사회에서도 확장된 버전으로 유지되어야 한다고 주장할 것이다. 이를 위해 나는 롤즈의 “두 도덕적 능력”을 중심으로 취약한 존재들을 구분하고 각 경우에 알맞은 도덕적 지위를 논의함으로써, 우려와 달리 롤즈적 계약론이 취약자의 정의 문제를 해결할 수 있음을 보일 것이다. 내가 확장을 시도해 가면서까지 그의 계약론적 틀을 유지하고자 함은 다른 두 대안들이 지닌 윤리적 기반보다 롤즈적 계약론이 지닌 구성주의 윤리관이 지닌 매력 때문이다. (shrink)

New technologies such as smart sensors improve rehabilitation processes and thereby increase older adults’ capabilities to participate in social life, leading to direct physical and mental health benefits. Wearable smart sensors for home use have the additional advantage of monitoring day-to-day activities and thereby identifying rehabilitation progress and needs. However, identifying and selecting rehabilitation priorities is ethically challenging because physicians, therapists, and caregivers may impose their own personal values leading to paternalism. Therefore, we develop a discussion template consisting of a (...) series of adaptable questions for the patient–physician encounter based on the capability approach. The goal is to improve geriatric rehabilitation and thereby increase participation in social life and well-being. To achieve this goal, we first analyzed what is considered important for participation on basis of the capability approach, human rights, and ethics of care. Second, we conducted an ethical analysis of each of the four identified dimensions of participation: political, economic, socio-cultural, and care. To improve compliance with rehabilitation measures, health professionals must align rehabilitation measures in an open dialogue with the patient’s aspiration for participation in each dimension. A discussion template based on the capability approach allows for a proactive approach in patient information and stimulates a critical assessment of treatment alternatives while reducing the risk of imposing personal values. (shrink)

Background: Caregivers and administrators in long-term facilities have fragile moral work in caring for residents with dementia. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. The conditions for sexual agency are directly affected by caregivers’ perceptions and attitudes, as well as facility policies. Objective: This article aims to clarify how to approach capacity determinations as it relates to sexual activity, propose how to theorize about patient autonomy (...) in this context, and suggest some considerations for finding an ethically responsible and practically feasible way to respect the sexual rights of this population. Research Design: The focus is on residents with early to moderate dementia in states of daily dependency on professional caregivers. The article critically examines existing empirical research on sexuality among persons with dementia, caregivers’ attitudes, and institutional roadblocks to enabling residents’ sexuality. A relational lens and insights from disability studies are used in the philosophical analysis. Participants and Research Context: No research participants were part of this analysis. Ethical Considerations: This article offers a conceptual analysis and normative framework only. Findings: The analysis highlights the delicate balance that capacity assessments for sexual activity have to strike; while caregivers should protect those who cannot give adequate consent, the denial of sexuality among residents can cause deep, long-ranging harms. Sexual agency features into an ongoing sense of self for many individuals with dementia, and the imposition of inappropriate standards and expectations for sexual autonomy can lead to unwarranted obstacles to sexual activity. Discussion: Recommendations include developing clear and inclusive institutional policies and practices of care, providing education for caregivers on how to discuss and document residents’ sexual preferences over time, and taking advantage of ethics consultation services. Conclusion: This analysis establishes the need for more research and discussion on this sensitive topic. Future research should investigate the specific responsibilities of caregivers in furthering the sexual interests of residents, how exactly to modify existing capacity instruments, and how best to support historically marginalized patients in their sexual identities. (shrink)

Background Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? -/- Aims The paper aims to identify changes and challenges in palliative care (...) due to the use of SST. In addition, normative guiding criteria for the use of SST are developed. -/- Methods The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. -/- Results and Conclusion First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care. (shrink)

Abstractabstract:Assistive care technologies, developed to replace, support, or extend human capabilities and to address the surging demands of care, have been gaining prominence recently. The current trend summons a posthuman approach through decentering the privileged role of humans in several spaces of caregiving, such as hospitals and eldercare homes. The existence of these cutting-edge assistive technologies, exciting as they are, hints at a possible future when the distinction between humans and technology will be blurred, thus transforming care (...) relations. However, these technological advances carry equal promises and dangers. While care robots may reduce the burden of caregiving, they also threaten to minimize human contact with vulnerable populations. This critical assessment reviews technological advances in care and close-reads several single-panel cartoons to theorize the impact of technologies on caring relations. The article also examines the neoliberal underpinnings of such technologies and the moral dangers of their unreflective use. (shrink)

Background: Advance care planning gives patients and their family members the possibility to consider and make decisions regarding future care and medical procedures. Aim: To explore the view of people in the early stage of dementia on planning for future care. Research design: The study is a qualitative interview study with a semistructured interview guide. The data were analyzed according to the Qualitative Analysis Guide of Leuven. Participants and research context: Dementia nurses assisted in the recruiting of (...) people with dementia for participation in the study. Study information was mailed to 95 people with early stage dementia. Ten people with dementia and eight caregiver spouses participated in the study. Ethical considerations: People with dementia belong to a vulnerable patient group, and care was taken in the areas of informed consent and accessible information. Findings: The views of people with dementia are characterized by a complex storyline involving tensions and movement within the themes of wants, beliefs, and levels of insight. Participants wanted to think about the future but also wanted to live in the here and now. Discussion: High demands are placed on the advance care planning process for people with dementia and their family caregivers. A dignity-enhancing approach in dementia care emphasizes the dignity of and respect for this vulnerable and care-dependent patient group. Conclusion: The process of advance care planning in dementia care needs to go beyond person-centered care to a relationship-centered process. The illness trajectory and the impact on autonomy need to be taken into consideration. (shrink)

Abstract“Patient-centred care” is the recent response to the malaise produced in the field of health care from the point of view both of a technical mentality and the paternalistic model. The interest in the story-telling approach shown by both the humanities and the social sciences has favoured a “narrative turn” in medicine too, where the new ethics of therapeutic relationship consider the hermeneutic method a means by which to integrate evidence and subjectivity, scientific data and patient experience. The (...) aim of this paper is to show how Ricoeur’s theory of “threefold mimesis” makes a conceptual contribution to the use of narrative interviews in nursing and also be successfully transferred into and applied in the field of healthcare in general. First, the paper examines how this narrative approach might open up new possibilities for the acquisition of in-depth knowledge of patients’ life experiences, a condition indispensable for the improvement of the quality of care. Secondly, it highlights how this Ricoeurian method seems capable of provide an opportunity for healthcare professionals to review their own understanding of the caregiver-patient therapeutic relationship, beginning with their confrontation with the patient’s world as revealed by the narrative they provide. (shrink)

Narrative Medicine in Hospice Care argues that the models of selfhood and care found in the work of Paul Ricoeur can serve as a framework for clinicians, caregivers, and end-of-life patients regardless of the patients’ verbal and cognitive capabilities.

Principles-based biomedical ethics has been a dominant paradigm for the teaching and practice of biomedical ethics for over three decades. Attractive in its conceptual and linguistic simplicity, it has also been criticized for its lack of moral content and justification and its lack of attention to relationships. This book identifies the modernist and postmodernist worldviews and philosophical roots of principlism that ground the moral minimalism of its common morality premise. Building on previous work by prominent Christian bioethicists, an alternative covenantal (...) ethical framework is presented in our contemporary context. Relationships constitute the core of medicine, and understanding the ethical meaning of those relationships is important in providing competent and empathic care. While the notion of covenant is articulated through the richness of meaning taught in the Christian Scriptures, covenantal commitment is also appreciated in Islamic, Jewish, and even pagan traditions as well. In a world of increasing medical knowledge and consequent complexity of care, such commitment can help to resist enticements toward the pursuit of self-interest. It can also improve relationships among caregivers, each of whose specific expertise must be woven into a matrix of care that constitutes optimal medical practice for each vulnerable and needy patient. (shrink)

The purpose of this paper is to offer an account of ‘flourishing’ that is relevant to health care provision, both in terms of the flourishing of the individual patient and carer, and in terms of the flourishing of the caring institution. It is argued that, unlike related concepts such as ‘happiness’, ‘well-being’ or ‘quality of life’, ‘flourishing’ uniquely has the power to capture the importance of the vulnerability of human being. Drawing on the likes of Heidegger and Nussbaum, it (...) is argued that humans are at once beings who are autonomous and thereby capable of making sense of their lives, but also subject to the contingencies of their bodies and environments. To flourish requires that one engages, imaginatively and creatively, with those contingencies. The experience of illness, highlighting the vulnerability of the human being, thereby becomes an important experience, stimulating reflection in order to make sense of one’s life as a narrative. To flourish, it is argued, is to tell a story of one’s life, realistically engaging with vulnerability and suffering, and thus creating a framework through which one can meaningful and constructively go on with one’s life. (shrink)

The glaring lack of formal and informal caregivers in Germany has not only become apparent in hospitals and nursing homes but also in home care arrangements. One tension is particularly pertinent in such arrangements: a ‘family-oriented’ logic of the long-term care insurance and the individual wishes of those in need of care meet the actual possibilities of family carers. This care gap has been compensated for by 24-hour care workers, so-called ‘live-ins’, from Eastern Europe for (...) some years. This contribution maps the ‘live-ins’ situation comprehensively from an ethical perspective. Based on different constellations regarding the ‘live-ins’ status as a professional nurse or non-professional caregiver, which ethical principles and moral norms are affected by whom and potentially conflict with each other in such home care arrangements at a micro and meso level of care are outlined. Special attention is paid to the tension between self-care and care for others, and to questions of the shared responsibility in and social responsibility of those external services that are involved in home care in addition to the ‘live-in’. In order to uncover, understand and influence the current ethical problems, an ethical framework that considers both the divergent interests of all individuals involved in the home care arrangement and their mutual dependency and vulnerability is needed. (shrink)

This book offers new essays exploring concepts and applications of nonideal theory in bioethics. Nonideal theory refers to an analytic approach to moral and political philosophy (especially in relation to justice), according to which we should not assume that there will be perfect compliance with principles, that there will be favorable circumstances for just institutions and right action, or that reasoners are capable of being impartial. Nonideal theory takes the world as it actually is, in all of its imperfections. Bioethicists (...) have called for greater attention to how nonideal theory can serve as a guide in the messy realities they face daily. Although many bioethicists implicitly assume nonideal theory in their work, there is the need for more explicit engagement with this theoretical outlook. A nonideal approach to bioethics would start by examining the sociopolitical realities of healthcare and the embeddedness of moral actors in those realities. How are bioethicists to navigate systemic injustices when completing research, giving guidance for patient care, and contributing to medical and public health policies? When there are no good options and when moral agents are enmeshed in their sociopolitical viewpoints, how should moral theorizing proceed? What do bioethical issues and principles look like from the perspective of historically marginalized persons? These are just a few of the questions that motivate nonideal theory within bioethics. This book begins in Part I with an overview of the foundational tenets of nonideal theory, what nonideal theory can offer bioethics, and why it may be preferable to ideal theory in addressing moral dilemmas in the clinic and beyond. In Part II, authors discuss applications of nonideal theory in many areas of bioethics, including reflections on environmental harms, racism and minority health, healthcare injustices during incarceration and detention, and other vulnerabilities experienced by patients from clinical and public health perspectives. The chapters within each section demonstrate the breadth in scope that nonideal theory encompasses, bringing together diverse theorists and approaches into one collection. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Witnessing Trauma:Emotional Challenges in Medical InterpretationMaja Milkowska-ShibataHaving a background in public health but no clinical experience, I never expected to be given the opportunity to work directly with patients. This changed when I became involved in medical interpretation. During my first year of service, I mostly assisted with primary care appointments until I was assigned to my first appointment in a cancer treatment center. The moment I stepped (...) into the distinctive atmosphere of that place, the gravity of the patients' circumstances became strikingly apparent. Each individual was [End Page E8] suffering from a life-threatening condition, which was unlike anything I was used to witnessing.The staff seemed to know each and every patient. I noticed a patient in a wheelchair accompanied by a relative carrying an oxygen tank. Someone brought gifts for the receptionists. A Christmas tree sat in the corner of the waiting area, ready for the holidays. The facility clearly conveyed an effort to resemble a home-like environment. "They must be regulars," I thought grimly.After completing a routine appointment with an elderly patient who was feeling weak, the patient requested an IV drip. My official assignment was over, and I could have gone home at that point, but something compelled me to stay. As I interpreted the nurse's instructions for setting up the drip, I could not help but notice the vulnerability of the patient, who had a thin and frail physique. The patient seemed grateful for my presence, so I settled into a chair in the corner and waited patiently.Soon, the patient drifted off to sleep, and I checked on them every now and again to make sure they were fine. The room became quiet, and I hoped the patient would not be disturbed by the sound of an ambulance or another patient seeking treatment. Although they were in capable hands, I found myself standing guard, metaphorically speaking. During the two hours it took for the drip to finish, I reflected on the emotions growing within me.It suddenly dawned on me: I had not been there for my own father during his battle with cancer. I felt obligated to stay by the patient's side as if fulfilling a debt owed for my absence at that important time. Offering companionship to the patient was the very least I could do.Working as medical interpreters and interacting with patients in varied life and health circumstances will expose us to a wide range of emotions. As we gain experience, helping patients teaches us humility and cultivates a stronger sense of empathy. Although not explicitly outlined in the standards of practice, we have the choice to utilize the powerful virtues of compassion and kindness to positively impact the life of a struggling patient. However, we also run the risk of becoming emotionally detached and losing the ability to act with compassion over time.Alongside my on-site commitments, I also work remotely for an organization managing a high volume of calls in numerous languages. In this role, medical consultations occur via phone or video. This environment can make you feel somewhat isolated, reminiscent of working in a call center where strict protocols dictate the ways calls begin and end. In this setting, I am exposed to slightly different emotional challenges. Shielded by a screen and physical distance, I often feel disconnected when interpreting, even for highly emotional situations.Yet, some interactions are hard to forget. I vividly remember a recent call during which I had to interpret for a victim of sexual assault. I felt deeply moved by their distraught voice and frightening details. For me, as an interpreter, the challenge became even more difficult as it was unreasonable to request the other party articulate their thoughts in short segments for effective communication. To keep up with the speaker, I had to jump into simultaneous interpreting, which many interpreters, including myself, find difficult. At the same time, I was slowed down by the police officer taking meticulous notes. I sympathized with the speaker but was also becoming impatient and angry with myself for experiencing these conflicting emotions. I wanted this call to end as soon as possible because it was... (shrink)

The objectives of the present study were to adapt a grief intervention program to family caregivers of patients with dementia, and assess its effectiveness in improving the symptoms of grief and other health-related variables. The intervention was based on Shear and Bloom's grief intervention program, with the necessary adaptations for use in the grieving process for a family member's illness. A total of 52 family caregivers of individuals with dementia participated. They were evaluated using a battery of self-report measures assessing (...) grief, overload, resilience, post-traumatic growth, experiential avoidance, health-related quality of life, and benefits of care. The results suggest that the program is effective in improving grief symptoms, caregiver burden, resilience, post-traumatic growth, and quality of life of family caregivers. It is necessary to create and implement interventions targeting caregivers' feelings and manifestations of ambiguous grief, because there is a lack of programs providing an efficient solution for the mental and physical health of caregivers, and because of the human and socioeconomic cost involved in neglecting this group. (shrink)

The medicalization of mental health remains a point of contention for bioethicists, especially as it concerns the epistemic capabilities of those diagnosed with an illness or disorder. Gosselin (2019) argues that biomedicalization commits epistemic injustices against these persons and consequently entraps them in a “cycle of vulnerability”; in response, she proposes principles of justice to defend them from such affronts. This paper builds off of her work and responds particularly to the demand for a “sociocentric view of the self as (...) essentially relational.” I present a theory of interdependent agency and affiliation that I contend conceptually bolsters her normative principles. I explain how an expanded use of relational epistemologies, united with a non-ideal theory of mental health, can enrich our hermeneutical resources with respect to those with mental illnesses/disorders. My account introduces normative considerations premised on interdependency, most notably from care theory. Concepts such as vulnerability, relational autonomy, attentiveness, and responsiveness ground a relationally-situated approach that (1) improves the epistemic positionalities of patients, (2) informs more suitable dynamics of care/treatment, and (3) unites groups of mutually interested actors against harm and injustice. I thus use a framework of care to promote affiliations of similarly disadvantaged persons under shared causes and initiatives. I refer to these assemblages as “caring affinity networks.”. (shrink)

In this paper, I challenge the argument that if we take health to be a meta-capability, we will be able to address the vulnerabilities that characterize human life. Instead, I argue that some vulnerabilities, like that attached to being a patient, can not be successfully addressed.

In this article, the authors examine whether and how robot caregivers can contribute to the welfare of children with various cognitive and physical impairments by expanding recreational opportunities for these children. The capabilities approach is used as a basis for informing the relevant discussion. Though important in its own right, having the opportunity to play is essential to the development of other capabilities central to human flourishing. Drawing from empirical studies, the authors show that the use of various types of (...) robots has already helped some children with impairments. Recognizing the potential ethical pitfalls of robot caregiver intervention, however, the authors examine these concerns and conclude that an appropriately designed robot caregiver has the potential to contribute positively to the development of the capability to play while also enhancing the ability of human caregivers to understand and interact with care recipients. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the capabilities approach (...) to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

Since the mid-1980s, there has been a gradual ethical drift in the provision of maternal care in African health facilities in general, and in Cameroon in particular, despite government efforts. In fact, in Cameroon, an increasing number of caregivers are reportedly not providing compassionate care in maternity services. Consequently, many women, particularly the financially vulnerable, experience numerous difficulties in accessing these health services. In this article, we highlight the unequal access to care in public maternity services in (...) Cameroon in general and the Noun Division in particular. For this study, in addition to documentary review, two qualitative data collection techniques were used: direct observation and individual interviews. Following the field work, the observation data were categorized and analyzed to assess their relevance and significance in relation to the topics listed in the observation checklist. Interviews were recorded using a dictaphone; they were subsequently transcribed and the data categorized and coded. After this stage, an analysis grid was constructed for content analysis of the transcripts, to study the frequency of topics addressed during the interviews, as well as divergences and convergences among the respondents. The results of this data analysis showed that money has become the driving force in service provision. As such, it is the patient’s economic capital that counts. Considered “clients”, pregnant women without sufficient financial resources wait long hours in corridors; some die in pain under the indifferent gaze of the professionals who are supposed to take care of them. In sharp contrast, the findings revealed that financially privileged patients are able to bribe caregivers to attract their favour and obtain prompt, careful, and effective care. These ethical abuses observed in the Noun public health facilities drive women to use, from the beginning of their pregnancies to the delivery, only healthcare delivered by traditional health attendants. (shrink)

The likelihood of nurse reflection is examined from the theoretical perspectives of Habermas' Theory of Communicative Action and Moral Action and Sumner's Moral Construct of Caring in Nursing as Communicative Action, through a critical social theory lens. The argument is made that until the nurse reaches the developmental level of post-conventional moral maturity and/or Benner's Stage 5: expert, he or she is not capable of being inwardly directed reflective on self. The three developmental levels of moral maturity and Benner's stages (...) are presented with discussion on whether or not there can be self-reflection because of an innate vulnerability that leads to self-protective behaviours. It is only when the confidence from mastery of practice has been achieved can the nurse be comfortable with reflection that enables him or her to become enlightened, emancipated, and empowered. The influences and constraints of the knowledge power between nurse and patient are acknowledged. The power hierarchy of the institution is recognized as constraining. (shrink)

Exploring the moral foundations of the healing relationship, Edmund D. Pellegrino and David C. Thomasma offer the health care professional a highly readable Christian philosophy of medicine. This book examines the influence religious beliefs have on the kind of person the health professional should be, on the health care policies a society should adopt, and on what constitutes healing in its fullest sense. Helping and Healing looks at the ways a religious perspective shapes the healing relationship and the (...) ethics of that relationship. Pellegrino and Thomasma seek to clarify the role of religious belief in health care by providing a moral basis for such commitment as well as a balancing role for reason. This book establishes a common ground for believers and skeptics alike in their dedication to relieve suffering by showing that helping and healing require an involvement in the religious values of patients. It clearly argues that religion provides crucial insights into medical practice and morality that cannot be ignored, even in our morally heterogeneous society. Central to the authors' message is the concept of patients' vulnerabilities and the need to help them recover not only from the disease but also from an existential assault on their personhood. They then show how this understanding can move caregivers to view their professions as vocations and thereby change the nature of health care from a business to a community of healing. Physicians, nurses, administrators, clergy, theologians, and other health professionals and church leaders will find this volume helpful for their own reflections on the role of religion in the health care ministry and for making a religious commitment integral to their professional lives. (shrink)

Background: Compassion is the core of nursing care and the basis of ethical codes. Due to the complex and abstract nature of this concept, there is a need for further investigations to explore the meaning and identify compassionate nursing care. Objectives: The purpose of this study was to identify and describe compassionate nursing care based on the experiences of nurses, patients, and family caregivers. Research design: This was a qualitative exploratory study. Data were analyzed using the conventional (...) content analysis method. Participants and research context: Nurses, hospitalized patients, and family caregivers in different educational hospitals in an urban area of Iran were selected from February 2016 to December 2017 using a purposeful sampling method (n = 34). In-depth and semi-structured interviews, focus group interviews, and field notes were used for data collection. Ethical considerations: The study was approved by the University’s Ethics Committee. The participants were informed about the aim and method of the study, reasons for recording the interviews, confidentiality of data, and voluntary nature of participation in this study. Findings: Data from interviews and filed notes were analyzed and classified into three themes: “effective interaction,” “professionalism,” and “continuous comprehensive care.” Discussion and conclusion: Emerged themes of this study involved holistic care in the current literature on nursing with an emphasis on effective interaction and professionalism. Nurses can understand patients’ and family caregivers’ comprehensive needs through interaction skills. In addition, clinical proficiency, maintaining professional ethics’ standards along with holism, and continuity in care are examples of compassionate care. Education program about compassionate care can enhance the quality of nursing care. (shrink)

Arguments for and against direct-to-consumer drug advertising (DTCA) center on two issues: (1) the epistemic effects on patients through access to information provided by the ads; and (2) the effects of such information on patients’ abilities to make good choices in the healthcare marketplace. Advocates argue that DTCA provides useful information for patients as consumers, including information connecting symptoms to particular medical conditions, information about new drug therapies for those conditions. Opponents of DTCA point out substantial omissions in information provided (...) by the ads and argue that the framing of the ads may mislead patients about the indications, uses, and effectiveness of the drugs advertised. They also suggest that DTCA has a number of potentially negative effects on the doctor–patient relationship. The standard arguments appear to assume a simplistic correlation—more information means more agency for patients. However, empirical studies on medical decision making suggest that this relationship is much more complex and nuanced. I examine recent research on ways in which patients are vulnerable with respect to DTCA. In order to address the complex issues of information acquisition and consumer decision-making in the health care marketplace, the focus should not be simply on what information patients need in order to make medical decisions, but also on the conditions under which patients actually are able to make medical decisions requiring complex medication information. This requires examining both the cognitive limitations of patients with respect to drug information and investigating patients’ preferences and needs in a variety of medical contexts. (shrink)

A man with Alzheimer's who wanders around, a caregiver who disconnects the alarm, a daughter acting on het own, and a doctor who is not consulted set the stage for a feminist reflection on capacity/competence assessment. Feminist theory attempts to account for gender inequality in the political and in the epistemological realm. One of its tasks is to unravel the settings in which actual practices, i.c. capacity/competence assessment take place and offer an alternative. In this article the focus will be (...) on a feminist ethics of care in which relationality, care, vulnerability, and responsibility are privileged concepts and attitudes. The emphasis on these notions leads to a specific view of autonomy that has consequences for both carereceivers (patients, clients) and caregivers (professional and not professional). These concepts constitute a default setting that shapes the context for capacity/competence assessment. Whereas this notion is meant to distinguish between those who need to be taken care of and those who do not, reflection on what it means to say ‘those who need to be taken care of’ is also required. The feminist analysis presented here emphasizes the necessity of the contextualization of assessment of competence. It sketches the multifold and complex grid that comprehends capacity assessment. (shrink)

This article analyzes the contribution Christian ethics might be able to make to the ethical debate on policy and caregiving in health and social care in the United Kingdom. The article deals particularly with the concepts of solidarity and subsidiarity which are essential in Christian social ethics and health care ethics, and which may be relevant for the ethical debate on health and social caregiving in the United Kingdom. An important argument in the article is that utilitarian and (...) market-driven policies in the National Health Service (NHS) and the social care system have marginalized the position of the elderly and have seriously impoverished the quality of care for the elderly. The neglect of the elderly and other vulnerable groups is also the result of widespread consumerist attitudes among patients and of libertarian models of noninterference which are affirmed by a public ethos of self-sufficiency and counter-dependency. Those who need care dare not make their need known to others and ask for help, while simultaneously those who could help are so intimidated by the public affirmation of privacy and negative rights that they do not dare to offer help except if this is explicitly demanded. This distant and standoffish attitude is in an important way responsible for the fact that the voice of those in need is altogether lost to the public forum. Christian ethics puts much emphasis on responsibility and solidarity with the needy other but is not able to have much impact on the delivery of care in a secularized society and health care system like the NHS. Nonetheless, Christianity still has a powerful and respected voice, by speaking up for those who cannot speak for themselves, such as the elderly and the handicapped. Christians can find allies in the ethics of care and other relational approaches in health care ethics in order to combat libertarianism, consumerism, and utilitarianism. (shrink)