This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best (...) interests of children. Such models of health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

What is family-centred care of a hospitalized child? A critical understanding of the concept of family-centred care is necessary if this widely preferred model is to be differentiated from other health care ideals and properly evaluated as appropriate to the care of hospitalized children. The article identifies distinguishable interpretations of family-centred care that can pull health professionals in different, sometimes conflicting directions. Some of these interpretations are not qualitatively different (...) from robust interpretations of the ideals of parental participation, care-by-parent and partnership in care that are said to be the precursors of family-centred care. A prominent interpretation that regards the child and his or her family collectively as the ‘unit of care’ arguably arises from ambiguity and is significantly problematic as a model for the care of hospitalized children. Clinical practice driven by this interpretation can include courses of action that do not aim to do what will best promote a hospitalized child’s welfare, and such cases will not be unusual. More broadly, this interpretation raises challenging questions about the responsibilities and authority of health professionals in relation to the interests of hospitalized children and their families. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best (...) interests of children. Such models of health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managing the Transition from Patient-Centered Care to ProtocolDavid SlakterI learned that I would need a kidney transplant in the summer of 2015. This was not a complete surprise to me, as I had been subjected to a number of tests and invasive procedures to investigate nephritis since I was a child. I had heard similar stories of clinicians performing repeated tests on my father for similar reasons without (...) any conclusions. Following my recommendation for transplant and consultation with genomics specialists, the cause of my kidney failure was determined to be Alport syndrome. What made Alport syndrome so difficult to diagnose in my case was that the associated mutation is a rare, autosomal-dominant one that has only recently been associated with the condition.After reviewing the data on survival rates for transitioning to dialysis versus a transplant, my family and I then considered the success rates for living versus cadaver donors, and the success rates at various transplant centers. The current data favor the long-term outcomes of transplant over dialysis and living over cadaver donors. Since we had decided to focus on searching for a live donor, my nephrologist recommended contacting Renewal, an organization that specializes in connecting those in need of a kidney transplant with live donors and providing support for donors to make the donation process less burdensome.On Renewal’s recommendation, my family and friends reached out across their social networks to search for potential donors. Many of those tested for compatibility were eliminated on basic matching criteria, others due to previously undiagnosed medical problems. Finally, the wife of a childhood friend came forward as an eligible donor and was also an incredibly close match on the antigens tested for kidney transplants.Having a living donor who was also a friend made the transplant experience somewhat less intimidating than it might have been. It meant the transformation of an existing relationship with someone already close to me, with fewer open questions about what may have motivated them to be so generous than if the donor had been someone I did not know. It also meant our families could be together in the waiting room, and that we shared in each other’s recoveries.Life post-transplant has been a significant improvement from what it was like immediately beforehand. Before my transplant, I regularly weighed food and consulted nutrition charts to gauge how much potassium I was consuming. To prevent too much potassium from building up in my bloodstream, I had to take sodium polystyrene [End Page 111] regularly. As one might guess from the name, it tastes much like burnt Styrofoam, and I could only ingest it with copious amounts of fruit-flavored syrup (strawberry covered up the awful flavor the best). There are other potassium binders on the market now, so fewer people with kidney failure will likely need to engage in such gustatory experimentation.I was also able to engage in more activities than what was possible even years before my transplant. I had long experienced difficulty with aerobic exercises, but assumed the reason was merely being out of shape. Though I have always walked regularly, even the one-mile walk from my office to my apartment had become a chore by the end. Within a few months after my transplant, I was riding a bicycle all over NYC, from Harlem to Brooklyn and back regularly, and hiking trails in nearby state parks. I began sessions with a personal trainer and attained a level of fitness I had not reached since I played soccer as a child.The transition from personalized care to one more driven by protocol has been a surprising and challenging aspect of the transplant process. While my previous experience with medical treatment has been individual meetings with physicians, my post-transplant care is managed by a team of nephrologists and other specialists in transplant care. My initial transplant nephrologist was automatically assigned to me. Because the standard of care for transplant patients is often driven by protocol, my assigned nephrologist recommended a biopsy on my transplanted kidney due to results in my recent lab tests. When pressed on the necessity of a biopsy in my case versus... (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental (...) and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

In recent years the literature on bioethics has begun to pose the sociological challenge of how to explore organisational processes that facilitate a systemic response to ethical concerns. The present discussion seeks to make a contribution to this important new direction in ethical research by presenting findings from an Australian pilot study. The research was initiated by the Clinical Ethics Committee of Redland Hospital at Bayside Health Service District in Queensland, Australia, and explores health professionals’ understanding of the nature of (...) ethics and their experience with ethical decision-making within an acute medical ward. This study focuses on the actual experience, understanding and attitudes of clinical professionals in a general medical ward. In particular, the discussion explores the specific findings from the study concerned with how a multi-disciplinary team of health professionals define and operationalise the notion of ethics in an acute ward hospital setting. The key issue reported is that health professionals are not only able to clearly articulate notions of ethics, but that the notions expressed by a multi-disciplinary diversity of participants share a common definitional concept of ethics as patient-centred care. The central finding is that all professional groups indicated that there is a guiding principle to address their ethical sense of the ‘good’ or the ‘ought’ and that is to act in a way that furthered the interests of patients and their families. The findings affirm the importance of a sociological perspective as a productive new direction in bioethical research. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental (...) and child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from (...) a triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center. (shrink)

BackgroundThe wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads.ProceduresThis study aimed to explore how ten people with dementia/family caregiver dyads experienced a 6-week group TSW program. (...) Dyads participated in homogenous TSW groups involving 2–4 dyads who were either living together in the community or living separately because the person with dementia resided in a care home. The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis.FindingsFive recurrent group themes were developed, indicating group TSW: was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; stimulated mental processes and reignited participants’ interests and skills; provided meaningful opportunities for reflection and connection with memories and life experiences; and prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: the facilitated process supported engagement, highlighting abilities and challenging doubts.ConclusionDyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do “more with music.” Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants’ engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy. (shrink)

The paediatric intensive care unit is a high-stress environment for parents, families and health care professionals alike. Family members experiencing stress or grief related to the admission of their sick child may at times exhibit challenging behaviours; these exist on a continuum from those that are anticipated in context, through to unacceptable aggression. Rare, extreme behaviours include threats, verbal or even physical abuse. Both extreme and recurrent ‘subthreshold’ behaviours can cause significant staff distress, impede optimal clinical (...) class='Hi'>care and compromise patient outcomes. The unique PICU environment and model of care may magnify stressors for both families and staff and the family-centred approach to care central to paediatric practice, may also contribute to contextual challenges. Pervasive conflict in paediatric healthcare is harmful for patients, families, PICU staff and the institution more broadly. We propose that caring for children and caring for staff are inseparable goals and the latter has been inadvertently but detrimentally deprioritised as FCC has become a primary focus. A transparent and graded hierarchy of responses to variable levels of challenging behaviour is necessary to ensure that families are supported, while HCPs remain protected in the workplace. This requires establishing firm limits supported by all teams and levels of the institution. As such, we aim to identify and clarify the context and impact of challenging parent and family behaviour in the PICU and to offer potential, proactive mitigation strategies, based on reflections and stakeholder discussion following recent clinical challenges and experiences in our unit. (shrink)

Intensive care nursing is prone to episodic anxiety linked to patients’ immediate needs for treatment. Balancing biomedical interventions with compassionate patient‐centred nursing can be particularly anxiety provoking. These patterns of anxiety may impact compassion and patient‐centred nursing. The aim of this paper is to discuss the application of Bowen Family Systems Theory to intensive care nursing, mapping a framework to support critical care nurses’ well‐being and, consequently, the quality of care they provide. This (...) article is founded on research, theoretical papers and texts focused on Bowen Family Systems Theory (BFST), and findings from a constructivist study on patient‐centred nursing and compassion in the intensive care unit. The goal of Bowen Family Systems Theory is to empower individuals, decreasing blame and reactivity. Bowen Family Systems Theory can be applied to the sometimes intimate relationships that develop in this environment, aiding understanding of nurses’ experience of compassion satisfaction and fatigue. Where organizational factors and management styles fall short in supporting critical care nurses to meet expectations, BFST can offer a perspective on the processes that occur within the intensive care unit, impacting nurse well‐being and quality of care. This paper makes plain the importance of understanding the anxiety that occurs within the intensive care unit as a system, so that individuals, such as critical care nurses, can be supported appropriately to ensure nurse well‐being and quality care. (shrink)

As more young people feel safe to outwardly identify as transgender or gender expansive (TGE), meaning that their gender identity does not align with the sex they were assigned at birth, an increasing number of youth who identify as TGE seek gender-affirming medical care (GAMC). GAMC raises a number of ethical questions, such as the capacity of a minor to assent or consent, the role of parents or legal guardians in decisions about treatment, and implications for equitable access to (...) care when differing parental or custodial viewpoints are present. These questions are further complicated by the difficulties in explaining the limits of long-term research in GAMC, with regard to the preservation of fertility, for example. We present two de-identified composite case studies to highlight dilemmas that may arise and offer recommendations to better support patient- and family-centered decision making for GAMC. These include employing a multidisciplinUniverary shared decision-making approach, disentangling informed consent and assent from chronological age, developing a consistent approach to the assessment of decisional capacity, and developing age-appropriate informational materials. (shrink)

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient. We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological monitoring (...) of dying patients prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care. Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval. Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed. All data relevant to the study are included in the article. (shrink)

Background Shared responsibility is an essential part of family-centred care and it characterizes the relationship between parents and healthcare professionals. Despite this, little is known about their shared responsibility for decision-making in neonatal intensive care units. Aim The aim of this scoping review was to identify previous studies on the subject and to summarize the knowledge that has been published so far. Method The review was conducted using electronic searches in the CINAHL, PubMed, Scopus and PsycINFO (...) databases and manual searches of the reference lists of the selected papers. The searches were limited to peer-reviewed papers that had been published in English from 2010 to September 2021. The data were selected based on inclusion and exclusion criteria and the findings were inductively summarized. We identified eight papers that met the inclusion criteria. Ethical considerations: The scoping review was conducted according to good scientific practice by respecting authorship and reporting the study processes accurately, honestly and transparently. Results The results showed that shared responsibility for decision-making was based on the parents’ intentions, but the degree to which they were willing to take responsibility varied. The facilitating and inhibiting factors for shared responsibility for decision-making were related to the communication between parents and professionals. The impact was related to the parents’ emotions. Conclusion It is essential that parents and professionals negotiate how both parties will contribute to their shared responsibility for decision-making. This will enable them to reach a mutual understanding of what is in the infants’ best interests and to mitigate the emotional burden of decisions in neonatal intensive care units. More research is needed to clarify the concept of shared responsibility for decision-making in this intensive care context. (shrink)

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

Rationale, aims and objectives To compare the pharmacotherapeutic approaches to diabetic hypertension of family physicians (FPs) and general practitioners (GPs). Methods A retrospective prescription-based study was conducted in 15 out of a total of 20 health centres, involving 115 primary care physicians – 77 FPs and 38 GPs, representing 74% of the primary care physicians of Bahrain. Prescriptions were collected during May and June 2000 to comprise a study population of 1266 diabetic-hypertensive patients. Results As monotherapy, angiotensin-converting (...) enzyme (ACE) inhibitors (37.9%) and β-blockers (38.3%) were the most commonly prescribed classes of antihypertensives by FPs and GPs, respectively. Calcium channel blockers (CCBs) were ranked third by both categories of physicians. For two-drug combinations, a β-blocker and an ACE inhibitor was the combination of choice for both physician categories. Patients managed by the FPs were more likely to receive a β-blocker–CCB combination (17.4 vs. 14.9%) or a diuretic–ACE inhibitor combination (16.7 vs. 11.4%) and less likely to receive a β-blocker–diuretic combination (11.8 vs. 16.7%) than those managed by the GPs. The proportion of patients receiving antihypertensive combinations was 40.6 and 38.5% for FPs and GPs, respectively. While the GPs prescribed CCB as a monotherapy to the elderly most often, the FPs choice was a β-blocker. Diuretics were less preferred by both FPs and GPs. β-Blocker–ACE inhibitor was again the most preferred combination of both FPs and GPs. FPs prescribed CCB–β-blocker combinations more often than GPs (P = 0.01), whereas CCB–ACE inhibitor combinations were less preferred (P = 0.09). A trend towards excessive use of short-acting nifedipine as monotherapy for elderly patients, both by FPs and by GPs, was noticed. Glibenclamide, alone or in combination with metformin, was the foremost antidiabetic drug prescribed by FPs and GPs. Middle-aged (45–64 years) patients seen by GPs were more likely to receive glibenclamide than those treated by FPs (P = 0.001) and less likely to receive gliclazide (P = 0.01). Combinations of a β-blocker with either glibenclamide or insulin were prescribed considerably more often by GPs.Conclusions Within the same practice setting, a substantial difference was observed between FPs and GPs in terms of preference for different classes of drugs in the management of diabetic hypertension. The compliance of both FPs and GPs was suboptimal; overall, the compliance of the FPs was closer to the recommended guidelines, however. Educational programmes should specifically address these inadequacies in order to improve the quality of health care. (shrink)

BackgroundParent-mediated intervention has been studied in promoting skill acquisition or behavior change in the children with autism spectrum disorder. Most studies emphasize on the improvement of child’s core symptoms or maladaptive behaviors, making parental perceived competence and self-efficacy secondary. Yet, the evaluations of intervention implementation are under-reported, especially when translating such interventions into a new population or context. This research investigated the intervention implementation of a 12-week parent coaching intervention which was delivered through telehealth and tailored to Chinese population. The (...) intervention was based on the Parent-mediated Early Start Denver Model with culturally adapted lectures, manuals, and demonstration and commentary videos. This study aimed to evaluate the intervention implementation by assessing parents’ satisfaction, acceptability, appropriateness, and feasibility.MethodA randomized controlled trial was conducted with two telehealth conditions: self-directed and web+group therapy. Parents in the self-directed condition received intervention individually through the online learning platform. The web+group therapy condition navigated the same program with weekly 1.5-h group coaching sessions via videoconferencing. This mixed-methods study used a concurrent convergent design to evaluate the intervention implementation at post-intervention. The quantitative data was collected from the Program Evaluation Survey and the qualitative data was collected from five focus groups.ResultsParents in self-directed group reported significantly lower scores in total perceived competence than parents in web+group therapy condition, while there was no group difference on the total self-efficacy. Tailored feedback, demonstration and commentary videos, peer commenting, live coaching, and guided reflection were the top-five acceptable telehealth strategies that were strongly endorsed by parents. Family centered care, home-based intervention, strategies relative to daily activities, the remote learning platform, and the program-based community were elements that parents considered when evaluating the program’s appropriateness. Parent modeling, step-by-step instructions, and tailored feedback were key components in making intervention strategies feasible for parents to implement at home.ConclusionFindings indicate the application of telehealth was acceptable, appropriate, and feasible for Chinese parents. Group-based parent coaching intervention via videoconferencing could be a promising home-based service model to increase parental perceived competence. A large-scale RCT is needed to investigate the effectiveness of group-based PMI via telehealth. (shrink)

After completing or dropping out of school, many young people leave their family households and in some cases they move from rural or semi-rural areas to urban centres. Faith-based organisations in major cities in South Africa sometimes act as a safety net for marginalised youth, especially as government departments are overburdened and not addressing all the needs of youth at the margins. This qualitative research is based on an analysis of individual and focus group interviews undertaken with young people (...) living in the central areas of Pretoria. It is shown how families and FBOs engage as separate, although at times not unrelated, entities in the lives of youth at the margins. In certain cases, the FBO became an institution of last resort and only in rare cases is a certain synergy achieved between FBOs and families. (shrink)

This unique textbook utilizes an integrated, case-based approach to explore how the domains of bioethics, public health and the social sciences impact individual patients and populations. It provides a structured framework suitable for both educators (including course directors and others engaged in curricular design) and for medical and health professions students to use in classroom settings across a range of clinical areas and allied health professions and for independent study. The textbook opens with an introduction, describing the intersection of ethics (...) and public health in clinical practice and the six key themes that inform the book's core learning objectives, followed by a guide to using the book. It then presents 22 case studies that address a broad spectrum of patient populations, clinical settings, and disease pathologies. Each pair of cases shares a core concept in bioethics or public health, from community perspectives and end-of-life care to medical mistakes and stigma and marginalization. They engage learners in rigorous clinical and ethical reasoning by prompting readers to make choices based on available information and then providing additional information to challenge assumptions, simulating clinical decision-making. In addition to providing a unique, detailed clinical scenario, each case is presented in a consistent format, which includes learning objectives, questions and responses for self-directed learning, questions and responses for group discussion, references, and suggested further reading. All cases integrate the six themes of patient- and family-centered care; evidence-based practice; structural competency; biases in decision-making; cultural humility and awareness of the culture of medicine; and justice, social responsibility and advocacy. The final section discusses some challenges to evaluating courses and learning encounters that adopt the cases and includes a model framework for learner assessment. (shrink)

Harris develops a neo-Aristotelian account of practical and moral reasoning that does account for such decisions of good people. On this account moral reasoning is part of a larger practice of practical reasoning and is viable only if it integrates smoothly into this larger practice. Good people, on Harris’s view of them, have a number of kinds of concerns that are integrated in their practical reasoning dispositions. Persons with “integrity in the thick sense” care about their family members, (...) their friends, about less intimate members of their communities and about “respectable” strangers from outside the community; they also care about having interesting things to do and meaningful work, and about doing some things in an excellent way. Insofar as people really care about any of these things, the satisfaction of the concerns produces a satisfying and meaningful life for the agent. So Harris’s theory is a kind of eudaimonism, though he points out that what people are seeking in pursuing these ends is the ends themselves—say, the well-being of friends or of respectable strangers or the well-turned musical phrase—and not something in addition called “happiness” to which these ends are means. (shrink)

Background: ICU patients’ family members are in a new, uncertain, and vulnerable situation due to the patient’s critical illness and complete dependence on the ICU nurses and physicians. Family members’ feeling of being cared for is closely linked to clinicians’ attitudes and behavior. Aim: To explore ICU nurses’ and physicians’ bedside interaction with critically ill ICU patients´ families and discuss this in light of the ethics of care. Research design: A qualitative study using participant observation, focus groups, (...) and thematic narrative analysis. Participants and research context: Data were gathered from July 2017 to August 2019, in four ICUs in Norway through 270 h of fieldwork and seven focus groups with ICU nurses and physicians. Ethical considerations: The Regional Committee for Medical and Health Research Ethics and the Norwegian Centre for Research Data approved the study. Findings: Quality of ICU family care depends on nurses’ and physicians’ attitudes, behavior, and personality traits. Three main themes were identified: being attentive, an active approach, and degree of tolerance. Discussion: The findings are discussed in light of the ethics of care and empirical research from the intensive care environment. Conclusions: This study shows that attentive, active, and tolerant clinicians represent a culture of ethical care that gives families greater freedom of action and active participation in patient care. Clinicians must not bear sole responsibility for this culture; it must have a firm basis in the hospital and ICU and be established through training, interprofessional reflection, and support of clinicians. (shrink)

Background For a variety of sociological reasons, different types of centredness have become important in health and social care. In trying to characterize one type of centredness, we were led to consider, at a conceptual level, the importance of the notion of centredness in general and the reasons for there being different types of centeredness. Method We searched the literature for papers on client-, family-, patient-, person- and relationship- centred care. We identified reviews or papers that (...) defined or discussed the notions at a conceptual level. The reviews and papers were analyzed as text transcripts. Results We identified 10 themes that were common to all the types of centredness. At a conceptual level we could not identify thematic differences between the types of centredness. These findings were subjected to a philosophical critique using ideas derived from Wittgenstein. Conclusion Different types of centredness are required in different contexts. The differences are justified by their practical utility. The unifying themes of centredness, however, reflect a movement in favour of increasing the social, psychological, cultural and ethical sensitivity of our human encounters. (shrink)

Human dignity is grounded in basic human attributes such as life and self-respect. When people cannot stand up for themselves they may lose their dignity towards themselves and others. The aim of this study was to elucidate if dignity remains intact for family members during care procedures in a children’s hospital. A qualitative approach was adopted, using open non-participation observation. The findings indicate that dignity remains intact in family-centred care where all concerned parties encourage each (...) other in a collaborative relationship. Dignity is shattered when practitioners care from their own perspective without seeing the individual in front of them. When there is a break in care, family members can restore their dignity because the interruption helps them to master their emotions. Family members’ dignity is shattered and remains damaged when they are emotionally overwhelmed; they surrender themselves to practitioners’ care, losing their self-esteem and self-respect. (shrink)

Changing Generations, a study of intergenerational relations in Ireland undertaken between 2011 and 2013 by the Social Policy and Ageing Research Centre, Trinity College, Dublin, and the Irish Centre for Social Gerontology, NUI Galway, used the Constructivist Grounded Theory method to interrogate support and care provision between generations. This article draws on interviews with 52 women ages 18 to 102, allowing for simultaneous analysis of older and younger women’s perspectives. The intersectionality of gender and class emerged as central to (...) the analysis. Socioeconomic positions shape contrasting forms of interdependency among family generations, ranging from “enmeshed” lives among lower socioeconomic groups to “freed” lives among higher socioeconomic groups. Women are initiating changes in how care and support flow across generations. Older women in higher socioeconomic groups are attuned to how emotional capital women expend across family generations can constrain women’s lives. In an expression of solidarity, older women are renegotiating the place of care labor in their own lives and in the lives of younger women. A new reciprocity emerges that amounts to women “undoing gender.” This process is, however, deeply classed as it is women in higher socioeconomic groups whose resources best place them to renegotiate care. (shrink)

Research on nursing ideology and the ethics of child and adolescent psychiatric nursing care is limited. The aim of this study was to describe and explore the ideological approaches guiding psychiatric nursing in child and adolescent psychiatric inpatient wards in Finland, and discuss the ethical, theoretical and practical concerns related to nursing ideologies. Data were collected by means of a national questionnaire survey, which included one open-ended question seeking managers' opinions on the nursing ideology used in their area of (...) practice. Questionnaires were sent to all child and adolescent psychiatric inpatient wards (n = 69) in Finland; 61 ward mangers responded. Data were analysed by qualitative and quantitative content analysis. Six categories - family centred care, individual care, milieu centred care, integrated care, educational care and psychodynamic care - were formed to specify ideological approaches used in inpatient nursing. The majority of the wards were guided by two or more approaches. Nursing models, theories and codes of ethics were almost totally ignored in the ward managers' ideological descriptions. (shrink)

The incidence of chronic illness is growing globally. As a result, there are fiscal and social implications for health delivery. Alongside the increased burden on health resources is the expectation that someone within the family will assume the responsibility of carer for those who are chronically ill. The expectation to assume the role of carer may be amplified for family members who are also nurses. Currently, there is little research that investigates the impact of nurses who are carers (...) for family with a chronic illness. Consequently, this qualitative study, based on face‐to‐face and telephone dialogue, was conducted using unstructured interviews. A phenomenological‐hermeneutic approach utilizing the hermeneutic circle was employed to understand the meaning of the transcriptions. Hermeneutic phenomenology inspired by Heideggerian philosophy was used as a framework to clarify themes and build ways of understanding the phenomenon of ‘Being’ a nurse and a family carer. Themes identified in the analysis of the study included a personal world, a professional world and a practical world. This paper explicates the findings from examination of the personal world of ‘Being’ a nurse who is also a family carer. Analysis revealed there were three facets to this way of ‘Being’: a shared experience, a caring experience and a fraught experience. The findings of the study disclosed that participants were informed by experiences that were both enriching and conflicting. These insights can enlighten healthcare professionals to the tensions which exist for nurses who care for family so that these considerations are incorporated into individualized and effective family‐centred care. (shrink)

We argue that contemporary conceptualizations of “persons” have failed to achieve the moral goals of “person-centred care” (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which (...) is one that privileges the lived experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood’s original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Positive Change in Perception and Care for a Difficult PatientMelissa CavanaughIf you asked any healthcare professional if they had ever cared for a difficult patient, I am certain the answer would be a resounding "Yes!" I have encountered many over my forty-two years as an RN. The story of Ms. E. is one of exceptional challenge and, I hope, success.I met Ms. E. in 2012 when I took (...) a nursing position in an outpatient primary care Geriatric Clinic. The clinic was located within an inner city, Level 1 Trauma health system whose mission is to care for the underserved. This organization had cared for the most vulnerable in the area for decades. The clinic model is unique in that it provides a "one-stop shop" for the common medical needs of the older adult. Other specialties, including podiatry, rheumatology, dementia care, and stroke, held appointments in this clinic area. The supporting staff team members assisted in each of these clinics, leading them to interact with the same patients frequently.Most of my previous experiences had been in inpatient units with a quick turnover of patients. There was no time or need to develop a long-term relationship with the patients in these settings. However, the comprehensive services found in this clinic coupled with the low staff turnover, led to a stable group of seniors receiving care in this office. Many of these individuals had been attending this clinic for over twenty years.I heard about Ms. E. before I ever met her. She was well known to the clinic team as a "problem" patient. The general response when she was on the schedule was eye rolling and audible moans. I soon learned that in addition to her scheduled visits, she would randomly appear outside the full glass interior doors. She would hover in the area, tapping on the glass to get the attention of a staff member. She did not hesitate to interrupt staff and other patients to make her needs known when she was in the exam room hallway. Often team members would scatter and hide to avoid dealing with her. If she was not in the building, she was on the triage line with a question or physical complaint. To complicate matters even further, her husband was our patient as well, and they always attended appointments together.Ms. E. suffered from common geriatric chronic diseases such as hypertension, diabetes, and osteoarthritis. Her morbid obesity complicated her diagnoses. Though she was able to safely ambulate with an assistive device such as a cane or walker, she routinely used a motorized chair. She and her husband admitted visiting fast food restaurants often even though they had met with a dietician for counseling on several occasions. They often requested help obtaining medications, yet related stories about visiting the local casino. Ms. E. spoke with a small, weak voice that added to the countenance of helplessness and pity. Unfortunately, these behaviors of noncompliance, attention seeking, and dependency on others extended to her immediate community, and she is estranged from family and friends who may have been a source of support to her. [End Page E1]Ms. E.'s appointments were scheduled at the end of the day due to the expectation and pattern of the extended time they would take. No matter her expressed concerns or needs, our recommendations and interventions were never enough. She continually questioned the assessment information and did not want to accept the education and orders given as the correct response to her problems. As one can see, her appointments could be exhausting!Ms. E. certainly deserved the best and most comprehensive care available from our team. Developing a more therapeutic relationship for her within the clinic became a priority for me. However, it was a daunting task to provide this level of care and to convince her that she deserved and was receiving such care. She presented a laundry list of characteristics that could lead to biases from the staff. Overcoming such individual biases toward her may be a barrier as well. These included her obesity, her lack of initiative, her self-centered behaviors, and her constant need for attention.As healthcare professionals... (shrink)

There is an increasing recognition internationally of the critical impact of communication within healthcare. The link between ineffective communication, patient dissatisfaction and critical incidents is well established. Family Planning New South Wales has sought to address patient-centred care and communication in its policy platform. This article reports on research conducted within FPNSW, which analysed the discourse features that constituted effective doctor–patient1 communication in sexual and reproductive health consultations. The principal aim of the research was to understand how (...) effectively messages were conveyed and received and to what degree patients were active participants in their own sexual healthcare. Analysed consultations were characterised by extremely high levels of communicative competence on the part of the doctors who integrated medical expertise with the development of interpersonal relationships with patients, thus positioning patients as active contributors to the consultations and to decisions about their ongoing treatment. The detailed linguistic analysis identified characteristic features of patient-centred communication that are essential to patient-centred care. These interactions demonstrate that communicating care is just as important as delivering care and involves a drawing together of the medical and the interpersonal in consultations. The article details strategies for interweaving medical knowledge and establishing rapport that can inform practitioner communication practices across different healthcare contexts. (shrink)

Ethical climate (EC) has been broadly described as how well institutions respond to ethical issues. Developing a tool to study and evaluate EC that aims to achieve sustained improvements requires a contemporary framework with identified relevant drivers. An extensive literature review was performed, reviewing existing EC definitions, tools and areas where EC has been studied; ethical challenges and relevance of EC in contemporary paediatric intensive care (PIC); and relevant ethical theories. We surmised that existing EC definitions and tools designed (...) to measure it fail to capture nuances of the PIC environment, and sought to address existing gaps by developing an EC framework for PIC founded on ethical theory. In this article, we propose a Paediatric Intensive Care Ethical Climate (PICEC) conceptual framework and four measurable domains to be captured by an assessment tool. We define PICEC as the collective felt experience of interdisciplinary team members arising from those factors that enable or constrain their ability to navigate ethical aspects of their work. PICEC both results from and is influenced by how well ethical issues are understood, identified, explored, reflected on, responded to and addressed in the workplace. PICEC encompasses four, core inter-related domains representing drivers of EC including: (1) organisational culture and leadership; (2) interdisciplinary team relationships and dynamics; (3) integrated child and family-centred care; and (4) ethics literacy. Future directions involve developing a PICEC measurement tool, with implications for benchmarking as well as guidance for, and evaluation of, targeted interventions to foster a healthy EC. (shrink)

This study describes the theoretical assumptions and the application for health‐promoting conversations, as a communication tool for nurses when talking to patients and their families. The conversations can be used on a promotional, preventive and healing level when working with family‐focused nursing. They are based on a multiverse, salutogenetic, relational and reflecting approach, and acknowledge each person's experience as equally valid, and focus on families’ resources, and the relationship between the family and its environment. By posing reflective questions, (...) reflection is made possible for both the family and the nurses. Family members are invited to tell their story, and they can listen to and learn from each other. Nurses are challenged to build a co‐creating partnership with families in order to acknowledge them as experts on how to lead their lives and to use their own expert knowledge in order to facilitate new meanings to surface. In this way, family health can be enhanced. (shrink)

BackgroundThis essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for (...) over 2 years illustrates how such a consent would have made a crucial difference.MethodsConceptual, philosophical, and ethical analysis.ResultsI first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as “allow cardiac death”, whose parallel logic with “allow natural death” is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act.ConclusionsMy intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded.Main (...) outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

Amid the controversies surrounding physician-assisted suicides, euthanasia, and long-term care for the elderly, a major component in the ethics of medicine is notably absent: the rights and welfare of the survivor's family, for whom serious illness and death can be emotionally and financially devastating. In this collection of eight provocative and timely essays, John Hardwig sets forth his views on the need to replace patient-centered bioethics with family-centered bioethics. Starting with a critique of the awkward language with (...) which philosphers argue the ethics of personal relationships, Hardwig goes on to present a general statement on the necessity of family-centered bioethics. He reflects on proxy decisions, the effects of elder care on the family, the financial and lifestyle consequences of long-term care, and physician-assisted suicide from the perspective of the family. His penultimate essay, "Is There a Duty to Die?" carries the idea of family-centered ethics to its logical, controversial, conclusion; comments upon this essay from Daniel Callahan, Larry Churchill, Joanne Lynn, and journalist Nat Hentoff offer differing views on this highly charged subject. As advances in medicine prolong patient's lives, the welfare of those ultimately responsible for medical care-the family-must be addressed. Hardwig's courageous and illuminating essays set forth a new direction in bioethics: one that considers the welfare of everyone concerned. (shrink)

In contrast to standardized guidelines, personalized medicine and person centered care are two notions that have recently developed and are aspiring for more individualized health care for each single patient. While having a similar drive toward individualized care, their sources are markedly different. While personalized medicine stems from a biomedical framework, person centered care originates from a caring perspective, and a wish for a more holistic view of patients. It is unclear to what extent these two (...) concepts can be combined or if they conflict at fundamental or pragmatic levels. This paper reviews existing literature in both medicine and related philosophy to analyze closer the meaning of the two notions, and to explore the extent to which they overlap or oppose each other, in theory or in practice, in particular regarding ethical assumptions and their respective practical implications. (shrink)

Women's access to reproductive health care is an ongoing source of conflict in U.S. politics; however, women in the military are often overlooked in these debates. Reproductive health care, including family planning, is a fundamental component of health care for women. Unintended pregnancy carries substantial health risks and financial costs, particularly for servicewomen. Compared with their civilian counterparts, women in the military experience greater challenges in preventing unwanted pregnancy and have less access to contraceptive services and (...) abortion. Current military policies, federal laws, and health care practices are not always consistent with evidence-based research and patient-centered care. A multidisciplinary effort on the part of military personnel, lawmakers, and health care providers is needed to eliminate these disparities. We discuss recommendations in the following categories: improving contraceptive education and adherence, expanding research, broadening access to the full range of contraceptive options including emergency contraception, and ensuring access to safe abortion. (shrink)

This book focuses on two important, interlinked themes in psychiatry, i.e., the relation between self (or: person), context and psychopathology; and the intrinsic value-ladenness of psychiatry as a practice. -/- Written against the background of scientistic tendencies in today’s psychiatry, it is argued in Part I that psychiatry needs a clinical conception of psychopathology alongside more traditional scientific conceptions; that this clinical conception of psychopathology must be based on a fundamental rethinking of the interaction between illness manifestations, contextual influences and (...) the patient as person, such that psychopathology is conceived as the product of this interaction rather than as the outward manifestation of a broken mechanism within the patient. -/- In Part II, it is shown that self- and context-related factors have a large impact on who one is as a professional. I argue that an analysis is needed of the normative aspects of the relations that sustain and frame professional role-fulfilment. This analysis culminates into a so-called normative practice model (NPM) which distinguishes between qualifying, conditioning and foundational principles (or: rules, norms). The normative practice model helps to locate and resist scientistic defenses of the legitimacy of psychiatry and to replace them by a positive account that provides clinicians (and scientists) the conceptual tools they need to justify what they do in broader contexts. The main thrust of the argument is to show that psychiatry needs a value-sensitive account of its legitimacy, in which other normative dimensions are recognized than those that sustain the expert role. Psychiatrists should in other words not defend the legitimacy of their profession by referring to the expert role solely but provide a broader account in which justice is done to the broader social, legal, and economic contexts of professional activity. The analysis of this inherent normativity begins within clinical practice, it extends to the concept of disease as well as to wider domains of psychiatric care and the sociology of professions, and, finally, amounts into an analysis of the value-ladenness of interactions between healthcare institutions, the government, professional organizations and patient groups. (shrink)

This discussion paper aims to explore potential ethical and moral implications of (patient) centredness in nursing and healthcare. Healthcare is experiencing a philosophical shift from a perspective where the health professional is positioned as the expert to one that re‐centres care and service provision central to the needs and desires of the persons served. This centred approach to healthcare delivery has gained a moral authority as the right thing to do. However, little attention has been given to its (...) moral and ethical theoretical grounding and potential implications for nurses, persons served and the healthcare system. Based upon a review of academic and grey literature, centredness is proposed as a value‐laden concept in nursing inquiry. Potential moral and ethical implications of centredness on nurses/healthcare providers, persons served and the healthcare system are discussed. These challenges are then considered within the context of normative and relational ethical theories. These perspectives may offer guidance relative to how one should act in those circumstances as well as an understanding as to how interdependency and engagement with the other person(s) can help navigate the challenges of a centred care approach. Viewing centredness through an ethical theoretical lens provides a valuable discourse to nursing in efforts to expand the knowledge base and integrate centred approaches into practice and policy. (shrink)

In Re G, the Court of Appeal awarded a joint residence order to the appellant, who was the lesbian ex-partner of the child’s full biological mother. The award also indirectly vested the appellant, a social parent, with parental responsibility and extended a body of case law to same-sex couples, which had until now only been applied to heterosexual couples. The initial purpose of this note is to outline the legal issues of the case in the context of the framework of (...) parental responsibility set out in the Children Act 1989, putting forward a test of ‘parental fitness’ (which focuses on active ‘care’ as its central consideration) for social parents who must appeal to the court’s discretion to obtain parental responsibility. Secondly, the note offers at once a positive reading of Re G while highlighting a number of reservations centring upon continued legal preference for the ‘sexual family’. It is argued that while the legal recognition of ‘family diversity’ and parenthood remains modelled on this ‘sexual family’, the relaxation of family ‘boundaries’ (despite legal victories such as Re G) will remain limited. (shrink)

Recently adopted health care practices and policies describe themselves as “patient-centered care.” The meaning of the term, however, remains contested and obscure. This paper offers a typology of “patient-centered care” models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics over several decades. It finds that four models of (...) patient-centered care emphasize: patients versus their parts; patients versus providers; patients/providers/states versus “the system”; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care. (shrink)

PurposeScarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.Materials and methodsA prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.Results8 (25%) physicians and 24 (75%) nurses participated (...) in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.ConclusionsOur findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals. (shrink)

: Hospitals have adopted a rhetoric of family-centered maternity care, and one of the ways in which they show their commitment to it is through the integration of the husband-as-coach model of childbirth (the Bradley method) into delivery practices. I argue that this model's widespread popularity testifies less to the culture's endorsement of a woman-centered approach than to healthcare's appropriation of "natural" childbirth as a site for the production and reproduction of patriarchal and capitalist power.

Hospitals have adopted a rhetoric of family-centered maternity care, and one of the ways in which they show their commitment to it is through the integration of the husband-as-coach model of childbirth into delivery practices. I argue that this model's widespread popularity testifies less to the culture's endorsement of a woman-centered approach than to healthcare's appropriation of “natural” childbirth as a site for the production and reproduction of patriarchal and capitalist power.

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient’s clinical or supportive team. Althoughpatientsand by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are (...) theleastlikely to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family–clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care. (shrink)

This paper addresses three factors that have contributed to shifts in decision making in health care. First, the notion of patient autonomy, which has changed due to the rise of patient-centred approaches in contemporary health care and the re-conceptualization of the physician-patient relationship. Second, the understanding of patient autonomy has broadened to better engage patient participation. Third, the need to develop cross-cultural health care ethics. Our paper shows that the shift in the West from the individual (...) to the relational self indicates an important change in the understanding of autonomy through the lens of culture. Practices that recognize the notion of the relational self allow for a more balanced view of autonomy and a richer conception of moral agency. (shrink)