This study explores the experiences of nurses that provide ‘complex’, generalist healthcare in hospital settings. Complex care is described as care for patients experiencing acute issues additional to multimorbidity, ageing or psychosocial complexity. Nurses are the largest professional group of frontline healthcare workers and patients experiencing chronic conditions are overrepresented in acute care settings. Research exploring nurses’ experiences of hospital‐based complex care is limited, however. This study aims to add to what is known (...) currently. Four ‘complex care’ nurses undertook in‐depth semistructured interviews and their narratives were analysed using the conceptual framework of complex adaptive phenomenology. Two overarching themes constituting the ‘essence’ of complex care nursing were identified: Contextual factors and attribute/value‐based elements. Creating meaningful patient outcomes and feeling part of a team were experienced as fulfilling, whereas time constraints, institutional settings and systemic barriers to comprehensive caregiving diminished the experience of providing complex care. Overall, work meaning presented as a dynamic phenomenon, shaped by personal and professional values, local settings and systemic factors. It is recommended that more expansive research be undertaken to explore the experience of complex care for nurses. Such knowledge can contribute to initiatives that draw a skilled, effective and engaged hospital‐based complex care nursing workforce. (shrink)

The ever-increasing prevalence of chronic conditions over the last half century has gradually altered the demographic of patients admitted to acute care settings; environments traditionally associated with episodic care rather than chronic and complex healthcare. In consequence, the lifeworld of the hospital medical doctor often entails healthcare for a complex, multi-morbid, patient cohort. This paper examines the experience of providing complex healthcare in the pressurised and fast-paced acute care setting. Four medical doctors from two (...) metropolitan health services were interviewed and their data were analysed using a combinatorial framework of phenomenology and complexity theory. The horizon of complex care revealed itself as dynamic, expansive, immersive, and relational, entailing a specialised kind of practice that is now common in acute care settings. Yet this practice has made inroads largely without heralding the unique nature and potential of its ground. Herein lies opportunity for complex care clinicians to expand notions of health and illness, and to shape research, practice, and system design, for a future in which care for health complexity is optimised, irrespective of care settings. (shrink)

Health systems are integrating medical-legal partnerships (MLPs) into clinical care and increasingly center “complex care” patients. These patients have intersecting medical and social needs and often face systemic inequities that exacerbate their chronic health conditions. This paper describes a role for MLPs in hospital quality initiatives; examines the ethics of MLPs assisting with guardianship and institutionalization of hospital patients including marginalized groups; and advocates for MLP interventions designed to address intersectional and ethical concerns.

In 1979, the U.S. Surgeon General published the first “Healthy People” report, launching subsequent initiatives in ten-year intervals to improve the nation’s health by focusing on preventive care a...

Volume 24, Issue 7, July 2024, Page 132-134.

This book offers a long-overdue exploration of care at a pivotal moment in the history of health care.

Paediatric Intensive Care Units (PICU) are complex interdisciplinary environments where challenging, high stakes decisions are frequently encountered. We assert that appropriate decisions are more likely to be made if the decision-making process is comprehensive, reasoned, and grounded in thoughtful deliberation. Strategies to overcome barriers to high quality decision-making including, cognitive and implicit bias, group think, inadequate information gathering, and poor quality deliberation should be incorporated. Several general frameworks for decision-making exist, but specific guidance is scarce. In this paper, (...) we provide specific guidance on collaborative complex decision-making for PICUs. The proposed approach is on principles of procedural justice and pragmatic hermeneutics. The process encompasses set-up/planning, information gathering, question formulation, analysis (perspectives, values, and principles), action plan development, decision documentation, and a review and appeal mechanism. The process can be adapted to suit other clinical contexts. Research evaluating the process, exploring how best to develop education for clinicians, and how to build a culture that values high quality deliberation, is worthwhile. (shrink)

The aim of this study was to explore the meaning of experience for home‐care nurses in a multicultural area of Sweden. Interviews and group discussions with a team of five home‐care nurses were interpreted in accordance with a hermeneutical perspective. The meaning was expressed in connection with the complexities of place, and space for care. Contradictions developed from diversities of perspectives incorporated in this particular multicultural area. Nurses saw themselves as mediators and allowed complexity to be considered (...) in order to manage care. They took on responsibility of creating a ‘space of care’, while the organizational structures of home care were perceived as something outside the care praxis. Making contradictions evident renders an intermediary caring strategy feasible. (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)

Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical (...) care and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research. (shrink)

Health professionals increasingly face patients with complex health problems and this pressurizes them to cooperate. The authors have analyzed how the complexity of health care problems relates to two types of cooperation: consultation and multidisciplinary teamwork (MTW). Moreover, they have analyzed the impact of these two types of cooperation on perceived professional autonomy. Two teams were studied, one team dealing with geriatric patients and another treating oncology patients. The authors conducted semi-structured interviews, studied written documents, held informal discussions (...) and observed the teams at work. Consultation was most likely to take place when a patient had multiple problems. However, if these problems were interrelated, i.e. the solution for one problem interfered with solving another, then MTW was favored. The same was true when the available information was equivocal such that there were conflicting interpretations of a problem. How the professionals perceived the relationship between complexity and the need to cooperate depended on their expertise, their occupational background, and their work orientation. Consultation did not affect the professional autonomy of the health care professionals. MTW however did decrease the perceived level of professional autonomy. The extent to which this occurred seemed to depend on the quality of the interpersonal relations within the team. The findings can help in selecting the most appropriate and efficient type of cooperation based on the complexity of a patient’s problems. They can also help team leaders to stimulate reflection and feedback processes, and medical trainers to develop competencies among students related to such teamwork behaviors. (shrink)

Next SectionObjectives A statute enacted in 2005 modified the legislative framework of the rights of terminally ill persons in France. Ten years after the EURONIC study, which described the self-reported practices of neonatal caregivers towards ethical decision-making, a new study was conducted to assess the impact of the new law in neonatal intensive care units (NICU) and compare the results reported by EURONIC with current practices. Setting and design The study was carried out in the same two NICU as (...) in the EURONIC qualitative study. A third centre was added to increase the sample size. From February to October 2007, 19 physicians and 17 nurses participated in semistructured interviews very similar to those for EURONIC. Content analysis identified the recurring themes emerging from the interviews. Results Compared with the EURONIC results, the caregivers reported that they pay greater attention to the views of parents and provided respectful support to the neonates when life-sustaining treatment is withdrawn. Active termination of life has become exceptional. The possibility of withdrawal of treatment, the administration of sedatives to control pain even at the risk of hastening death, the emphasis on sparing parents the burden of decision, and the relative ignorance of the law were very similar to the EURONIC findings. Conclusion Both the medical and the legal regulation of practices has allowed more dialogue with the parents and more humane care for dying newborns. A new European study is necessary to investigate the possible changes in practices and attitudes also in other countries. (shrink)

Over the past decades, anti-cancer treatments have evolved rapidly from cytotoxic chemotherapies to targeted therapies including oral targeted medications and injectable immunooncology and cell therapies. New anti-cancer medications come to markets at increasingly high prices, and health insurance coverage is crucial for patient access to these therapies. State laws are intended to facilitate insurance coverage of anti-cancer therapies.Using Massachusetts as a case study, we identified five current cancer coverage state laws and interviewed experts on their perceptions of the relevance of (...) the laws and how well they meet the current needs of cancer care given rapid changes in therapies. Interviewees emphasized that cancer therapies, as compared to many other therapeutic areas, are unique because insurance legislation targets their coverage. They identified the oral chemotherapy parity law as contributing to increasing treatment costs in commercial insurance. For commercial insurers, coverage mandates combined with the realities of new cancer medications — including high prices and often limited evidence of efficacy at approval — compound a difficult situation. Respondents recommended policy approaches to address this challenging coverage environment, including the implementation of closed formularies, the use of cost-effectiveness studies to guide coverage decisions, and the application of value-based pricing concepts. Given the evolution of cancer therapeutics, it may be time to evaluate the benefits and challenges of cancer coverage mandates. (shrink)

This research investigates sociological ambivalence in negotiating care work in Japanese families. Women and their aging parents experience ambivalence based on conflicting norms of filial obligation, gender ideology, and cultural beliefs about the parent—child bond. Analysis of in-depth interview data showed ambivalence was based on conflict between norms and cultural beliefs and intergenerational differences in norms of caregiving. Not only are norms of care work in Japan gendered, but they also create conflicting demands for women who are torn (...) among providing care for their parents, providing care for their in-laws, and changing expectations for women in contemporary Japan. In the families studied, norms of filial obligation were challenged, but gendered definitions of care work were left largely intact. These findings challenge theories of elder care that identify a hierarchy of preferred caregivers based on filial obligation and gender. (shrink)

Policy reforms implemented in Saudi Arabia in recent years aim to modernize the culture and infrastructure of healthcare delivery and are expected to integrate person‐ and patient‐centered care principles throughout the national healthcare system. However, in a complex multicultural environment where most nurses are international migrant workers, unique challenges emerge that frame the delivery of care. Better understanding is needed about what nurses perceive to be high‐quality, person‐centered care in Saudi Arabia and how they manage to (...) enact it in practice. Semi‐structured interviews were conducted with 21 nurses working in two tertiary hospitals in Riyadh, the capital city. Participants included Saudi citizens (n = 9) and expatriates (n = 12) who were asked to describe their perceptions of quality nursing care and explain the obstacles that they encounter in providing such care. Nurses reported extensive efforts to achieve individualized, empathetic, developmentally appropriate care. Their descriptions of care aligned with principles of patient‐centeredness in care but were not separable from challenges at the patient, organizational, and regional levels, including staffing and supplies shortages, gaps in regional care coordination, inadequate language translation services, variability in cultural beliefs about healthcare communication, and overt discrimination against expatriate workers. Nurses reported creative strategies to achieve professional nursing values while navigating a dynamic landscape of constraints. The findings add to literature suggesting that person‐centeredness in care cannot be understood outside the social and organizational conditions that shape it. (shrink)

In the context of health care system complexity, nurses need responsive leadership and organizational support to maintain intrinsic motivation, moral sensitivity and a caring stance in the delivery of patient care. The current complexity of nurses’ work environment promotes decreases in work motivation and moral satisfaction, thus creating motivational and ethical dissonance in practice. These and other work-related factors increase emotional stress and burnout for nurses, prompting both new and seasoned nurse professionals to leave their current position, or (...) even the profession. This article presents a theoretical conceptual model for professional nurses to review and make sense of the ethical reasoning skills needed to maintain a caring stance in relation to the competing values that must coexist among nurses, health care administrators, patients and families in the context of the complex health care work environments in which nurses are expected to practice. A model, Nurses’ Ethical Reasoning Skills, is presented as a framework for nurses’ thinking through and problem solving ethical issues in clinical practice in the context of complexity in health care. (shrink)

Despite the entrenched acceptance of normal science in health care, it appears that authoritative, positivist, linear, risk averse, certainty-based thinking can only get us so far along the route of optimum health. This paper examines labor and childbirth as a paradigm case of a complex adaptive system (CAS) and offers the example of techniques used in a master-level course on normal childbirth to illustrate how maternity care clinicians can be introduced to complexity-based thinking through reflexive analysis of (...) real life clinical narratives. It suggests that these techniques might be used as a basis for answering the question, what is likely to work for this person, in this situation, given the range of evidence, and given their values and beliefs, my values and beliefs, and my clinical skills and knowledge? Topics discussed in this paper include complexity, pregnancy, and childbirth; mainstreaming complexity-focused decision making in maternity care; and using story in practice. In conclusion, complexity theory appears to offer a good explanatory model for pregnancy and childbirth, both in general, and for specific individuals. Future work in this area should examine the efficacy and limits to formal story telling in maternity care, with the aim of increasing optimal maternity care for mothers and babies, and for the staff and organizations that deliver the care. (PsycINFO Database Record (c) 2010 APA, all rights reserved). (shrink)

In this article, we examine the inter-relationship between moral theory and the unpredictable and complex world of primary health care, where the values of patient and doctor, or groups of patients and doctors, may often clash. We introduce complexity science and its relevance to primary care; going on to explore how it can assist in understanding ethical decision making, as well as considering implications for clinical practice. Throughout the article, we showcase aspects and key concepts using examples (...) and a case study developed from our day-to-day experience working as clinical practitioners in primary care. (shrink)

In this paper, the historical alignment of nursing with divinity‐based perspectives and modern New Age nursing theories are explored. The nature of divinity in nursing is examined, together with the complexities and issues that arise in adopting a spiritual basis for care. The work of the key theorists in this area (Rogers, Newman, Parse, Watson, Dossey) is reconsidered and fundamental epistemological problems inherent in this approach reviewed. Specific concerns with the interpretation of holistic care, adoption of doxastic logic, (...) faith‐based rationales, influence of Caucasian Judeo‐Christian and New Age values, misappropriation of science, use of pseudoscience and development of divinity as social consumer product are discussed. Practical problems with using a spiritual basis in contemporary nursing practice are also explored and the alignment of divinity‐based nursing theories with the modern antiscience movement is examined. Overall, the re‐emergence of divinity‐based nursing and spiritual basis for care may be problematic, and would seem to counter the development of an inclusive profession. Additionally, the alignment of nursing with antiscience movements rejecting biomedicine has significant public health implications. This is argued as a regressive step for the advancement of the profession. (shrink)

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely (...) to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. (shrink)

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

Health-care providers frequently face clinical ethical dilemmas when working with transgender youth who require hormone therapy but lack parental support for this intervention. Through semi-structured interviews and grounded theory analysis, we explored ethical and clinical decision-making processes of health-care providers, as well as the health care experiences of trans youth with family discordance. We analyzed responses in relation to North American bioethics principles, best interests standard, and the harm principle, exploring issues of autonomy, evidence, and anti-trans bias. (...) We propose an ethically acceptable clinical approach termed parallel process hormone therapy initiation to address the needs of transgender youth with complex family situations. (shrink)

In _Caring_, Peta Bowden extends and challenges recent debates on feminist ethics. She takes issue with accounts of the ethics of care that focus on alleged principles of caring rather than analysing caring in practice. Caring, Bowden argues, must be understood by 'working through examples'. Following this approach, Bowden explores four main caring practices: mothering, friendship, nursing and citizenship. Her analysis of the differences and similarities in these practices - their varying degrees of intimacy and reciprocity, formality and informality, (...) vulnerability and choice - reveals the practical complexity of the ethics of care. _Caring_ recognizes that ethical practices constantly outrun the theories that attempt to explain them, and Bowden's unique approach provides major new insights into the nature of care without resorting to indiscriminate unitary models. It will be essential reading for all those interested in ethics, gender studies, nursing and the caring professions. (shrink)

BackgroundEvolving medical technology, advancing biomedical and drug research, and changing laws and legislation impact patients’ healthcare options and influence healthcare practitioners’ (HCPs’) practices. Conscientious objection policy confusion and variability can arise as it may occasionally be unclear what underpins non-participation. Our objective was to identify, analyze, and synthesize the factors that influenced HCPs who did not participate in ethically complex, legally available healthcare.MethodsWe used Arksey and O’Malley’s framework while considering Levac et al.’s enhancements, and qualitatively synthesized the evidence. We (...) searched Medline, CINAHL, JSTOR, EMBASE, PsychINFO, Sociological Abstracts, and ProQuest Dissertations and Theses Global from January 1, 1998, to January 15, 2020, and reviewed the references of the final articles. We included articles written in English that discussed the factors that influenced physicians and registered nurses (RNs) who did not participate in end-of-life (EOL), reproductive technology and health, genetic testing, and organ or tissue donation healthcare areas. Using Covidence, we conducted title and abstract screening, followed by full-text screening against our eligibility criteria. We extracted the article’s data into a spreadsheet, analyzed the articles, and completed a qualitative content analysis using NVivo12.ResultsWe identified 10,664 articles through the search, and after the screening, 16 articles were included. The articles sampled RNs (n = 5) and physicians (n = 11) and encompassed qualitative (n = 7), quantitative (n = 7), and mixed (n = 2) methodologies. The care areas included reproductive technology and health (n = 11), EOL (n = 3), organ procurement (n = 1), and genetic testing (n = 1). One article included two care areas; EOL and reproductive health. The themed factors that influenced HCPs who did not participate in healthcare were: (1) HCPs’ characteristics, (2) personal beliefs, (3) professional ethos, 4) emotional labour considerations, and (5) system and clinical practice considerations.ConclusionThe factors that influenced HCPs’ who did not participate in ethically complex, legally available care are diverse. There is a need to recognize conscientious objection to healthcare as a separate construct from non-participation in healthcare for reasons other than conscience. Understanding these separate constructs will support HCPs’ specific to the underlying factors influencing their practice participation. (shrink)

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been (...) associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 49-50, October 2012.

This paper explores how using a domains of ethics analysis approach might constructively contribute to an enhanced understanding (among those without specialized ethics training) of ethically-complex health care practices through the consideration of one such sample practice, i.e., deep and continuous palliative sedation (DCPS). For this purpose, I select four sample ethics domains (from a variety of possible relevant domains) for use in the consideration of this practice, i.e., autonomous choice, motives, actions and consequences. These particular domains were (...) choosen because of their relevance to the analysis of DCPS and their relative ease of access to those without ethics training. The analysis demonstrates that such an approach could facilitate the emergence of accessible arguments and discussion points that could enhance the understanding and appreciation of this and other health care practices with strong ethics dimensions. (shrink)

BackgroundHow should clinical ethics support services such as clinical ethics committees (CECs) be implemented and evaluated? We argue that both the CEC itself and theimplementationof the CEC should be considered as ‘complex interventions’.Main textWe present a research project involving the implementation of CECs in community care in four Norwegian municipalities. We show that when both the CEC and its implementation are considered as complex interventions, important consequences follow – both for implementation and the study thereof. Emphasizing four (...) such sets of consequences, we argue, first, that the complexity of the intervention necessitates small-scale testing before larger-scale implementation and testing is attempted; second, that it is necessary to theorize the intervention in sufficient depth; third, that the identification of casual connections charted in so-called logic models allows the identification of factors that are vital for the intervention to succeed and which must therefore be studied; fourth, that an important part of a feasibility study must be to identify and chart as many as possible of the causally important contextual factors.ConclusionThe conceptualization of the implementation of a CEC as a complex intervention shapes the intervention and the way evaluation research should be performed, in several significant ways. We recommend that researchers consider whether a complex intervention approach is called for when studying CESS implementation and impact. (shrink)

The incredible complexity of the United States health care system can be connected to three simple outcomes: access, affordability, and quality. We should measure our progress against these three measures. While historic progress on access was made through implementation of the Affordable Care Act, the next area of focus for more results across all three measures is delivery system reform.

Having a premature or critically ill infant in a neonatal intensive care unit is a traumatic experience for parents that can alter their lives. Parents navigate complex emotions of fear, unc...

The study of complexity in chronic care is an emergent discipline that has not yet developed a consistent theoretical framework. Thinking in the field of complexity encompasses complexity science and complexity theories, which represent a convergence of different types of ideas and theories that focus on the interactions of individual parts that make up a complex system. In this context, an important distinction is to be made between "complex" and "complicated." If a system—despite the fact that it (...) may consist of a huge number of components— can be given a complete description in terms of its individual constituents, such a system is merely complicated. An example could be computers. In a complex system, on the .. (shrink)

The practice of covertly administering medications to patients without their consent is often discussed in the framework of legal questions around the right of patients to consent and refuse medical treatment. However, this practice also raises significant questions surrounding the professional duties and obligations of health care professionals as it relates to the decision-making process of whether to engage in the covert administration of medications. In this paper, I present an overview of the origin of those duties and obligations, (...) and discuss how those duties and obligations when seen from different perspectives may either justify or prohibit the practice. Further, I discuss whether the duties and obligations of health care professionals as they are currently framed are suited to address the complexities of this issue both from the health care professional and patient perspectives. This analysis is conducted in the context of duties and obligations that arise from not only legal framework but also from the ethical requirements from professional codes of ethics. (shrink)