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.

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)

Rationing in healthcare remains very much a taboo topic. Before COVID-19, it rarely received public attention, even when it occurred in everyday practices, mainly in the form of implicit rationing, as it continues to do today. There are different definitions, types and levels of healthcare rationing, according to different perspectives. With the aim of contributing to a more coherent debate on such a highly emotional healthcare issue as rationing, here are provided a number of reflections from a patient advocate perspective (...) which are specifically focused on bedside rationing, the most troublesome level, both for patients and clinicians, particularly in regard to cancer care. Oncology, with its numerous expensive therapies and increasing number of patients, is undeniably one of the main areas contributing to the increase in healthcare costs. However, the fixed budgets of today's publicly financed health systems cannot allow unlimited access to the potentially beneficial treatments to all patients. Bedside rationing constitutes the last phase of many decision-making processes occurring at different interrelated levels (macro-levels), both inside and outside healthcare systems, which implicitly and inevitably result in a bottleneck determined by the upstream decisions themselves. Shifting from implicit to explicit bedside rationing essentially means moving from a paternalistic to a citizen-before-patient approach; this implies, first of all, a cultural change. Practical bedside rationing is an ethically complex topic, but one that needs to be urgently addressed in a transparent and open debate. In this scenario, the oncological community – patients, patient advocates and clinicians – can and should play an important role. (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)

In this paper we aim to discuss a theoretical explanation for the positive relationship between patients’ knowledge and their trust in healthcare personnel. Our approach is based on John Dewey’s notion of continuity. This notion entails that the individual’s experiences are interpreted as interrelated to each other, and that knowledge is related to future experience, not merely a record of the past. Furthermore, we apply Niklas Luhmann’s theory on trust as a way of reducing complexity and enabling action. Anthony (...) Giddens’ description and analysis of the high modern society provides a frame for discussing the preconditions for patient-healthcare personnel interaction. High modernity is dominated by expert systems and demands trust in these. We conclude that patient knowledge and trust in healthcare personnel is related because both knowledge and trust are future- and action-oriented concepts. The traits of high modernity provides opportunities and challenges as the personnel can and must perform discretion. This discretion must be made in a context where knowledge is considered uncertain and preliminary. (shrink)

Background: Direct–to–consumer genetic testing (DTCGT) offers risk estimates for a variety of complex diseases and conditions, yet little is known about its impact on actual users, including their decisions about sharing the information gleaned from testing. Ethical considerations include the impact of unsolicited genetic information with variable validity and clinical utility on relatives, and the possible burden to the health care system if revealed to physicians. Aims: The qualitative study explored primary care patients’ views, attitudes, and (...) decision making considerations regarding DTCGT. This article focuses on the disclosure decisions participants made regarding participation, testing, and results of DTCGT, a topic which arose as a secondary aim of the study. Methods: Through four longitudinal interviews (pre–test, results, 3 and 12 months post–test) we examined twenty primary care patients’ decisions, expressed intentions, and actions regarding disclosure to immediate and extended family, friends and coworkers, and physicians about participation in and results of DTCGT. Individual interviews were analyzed using qualitative content analysis and a summative approach to describe the global themes. Results: Most participants disclosed to some immediate family; less than half disclosed to extended family; approximately half talked to friends. Most participants stated they would or might disclose to physicians about DTCGT and a few did. Conceptual themes that emerged from the data analysis include ambivalence about disclosure, consistency between intention and actual disclosure behavior and decisions, and conditional information sharing. Conclusions: Participants’ intentional and actual disclosure patterns offer insight into how they view DTCGT, weigh results, and the potential impact of DTCGT. (shrink)

Telemedicine is a complex field including various applications and target groups. Especially telehealthcare is seen by many as a means to revolutionize medicine. It gives patients the opportunity to take charge of their own health by using self-tracking devices and allows health professionals to treat patients from a distance. To some, this means an empowerment of patient autonomy as well as an improvement in the quality of care. Others state the dangers of depersonalization of medicine and (...) the pathologization of daily life. This paper examines the ethical implications of telehealthcare, focusing on patient autonomy and quality of care by analyzing metareviews, randomized controlled trials and narrative ethical analyses on the topic. As a result, we conclude that the technically enhanced encounter between patients and health professionals may mean an empowerment of patient autonomy when it goes along with a personal relationship based on trust, assistance and support. When it comes to the quality of care, telehealthcare may lead to an improvement as long it is adopted to the patient’s individual needs. (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)

Time-limited trials of intensive care have arisen in response to the increasing demand for intensive care treatment for patients with a low chance of surviving their critical illness, and the clinical uncertainty inherent in intensive care decision-making. Intensive care treatment is reported by most patients to be a significantly unpleasant experience. Therefore, patients who do not survive intensive care treatment are exposed to a negative dying experience. Time-limited trials of intensive care (...) treatment in patients with a low chance of surviving have both a small chance of benefiting this patient group and a high chance of harming them by depriving them of a good death. A ‘rule of rescue’ for the critically unwell does not justify time-limiting a trial of intensive care treatment and overlooks the experiential costs that intensive care patients face. Offering time-limited trials of intensive care to all patients, regardless of their chance of survival, overlooks the responsibility of resource-limited intensive care clinicians for suffering caused by their actions. A patient-specific risk–benefit analysis is vital when deciding whether to offer intensive care treatment, to ensure that time-limited trials of intensive care are not undertaken for patients who have a much higher chance of being harmed, rather than benefited by the treatment. The virtue ethics concept of human flourishing has the potential to offer additional ethical guidance to resource-limited clinicians facing these complex decisions, involving the balancing of a quantifiable survival benefit against the qualitative suffering that intensive care treatment may cause. (shrink)

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

Background As more people are living longer, they become frail and are affected by multi-morbidity, resulting in increased demands from the ambulance service. Being vulnerable, older patients may have reduced decision-making capacity, despite still wanting to be involved in decision-making about their care. Their needs may be complex and difficult to assess, and do not always correspond with ambulance assessment protocols. When needing an ambulance, older patients encounter ambulance clinicians who are under high workloads and primarily (...) consider themselves as emergency medical care providers. This situates them in the struggle between differing expectations, and ethical conflicts may arise. To resolve these, providing ethical care, focussing on interpersonal relationships and using ethical competence is needed. However, it is not known whether ambulance clinicians possess the ethical competence required to provide ethical care. Thus, the aim of this study was to deductively explore their ethical competence when caring for older patients with reduced decision-making ability. Methods A qualitative deductive and exploratory design was used to analyse dyadic interviews with ambulance clinicians. A literature review, defining ethical competence as comprising ethical sensitivity, ethical knowledge, ethical reflection, ethical decision-making, ethical action and ethical behaviour, was used as a structured categorization matrix for the analysis. Results Ambulance clinicians possess ethical competence in terms of their ethical knowledge, highlighting the need for establishing an interpersonal relationship with the older patients. To establish this, they use ethical sensitivity to interpret the patients’ needs. Doing this, they are aware of their ethical behaviour, signifying how they must act respectfully and provide the necessary time for listening and interacting. Conclusions Ambulance clinicians fail to see their gut feeling as a professional ethical competence, which might hinder them from reacting to unethical ways of working. Further, they lack ethical reflection regarding the benefits and disadvantages of paternalism, which reduces their ability to perform ethical decision-making. Moreover, their ethical knowledge is hampered by an ageist approach to older patients, which also has consequences for their ethical action. Finally, ambulance clinicians show deficiencies regarding their ethical reflections, as they reflect merely on their own actions, rather than on their values. (shrink)

The question of whether a patient has insight is among the first to be considered in psychiatric contexts. There are several competing conceptions of clinical insight, which broadly refers to a patient’s awareness of their mental illness. When a patient is described as lacking insight, there are significant implications for patient care and to what extent the patient is trusted as a knower. Insight is currently viewed as a multidimensional and continuous construct, but competing conceptions of insight still lack (...) consensus on the specifics. Studies also give contradictory evidence regarding the frequency and consequences of poor insight. A number of crucial questions remain unanswered. After outlining some of the key theoretical disagreements about what insight means, I highlight ethical issues that have not received much attention in the literature. Given the conceptual ambiguities and the absence of standardised bedside tools, there are significant ethical concerns about insight assessments. I highlight two main ethical concerns, specifically that these assessments risk: marginalising patients by setting unattainable ideals for self-knowledge and minimising the patient’s own perspective on their mental health. I close with recommendations for documenting and responding to concerns about poor insight, so patients who are vulnerable to losing epistemic trust are better supported in their therapeutic relationships. (shrink)

Background Older patients in emergency care often have complex needs and may have limited ability to make their voices heard. Hence, there are ethical challenges for healthcare professionals in establishing a trustful relationship to determine the patient’s preferences and then decide and act based on these preferences. With this comes further challenges regarding how the patient’s autonomy can be protected and promoted. Aim To describe nurses’ experiences of dealing with older patients’ autonomy when cared for in (...) emergency departments (EDs). Research design This study adopted reflective lifeworld theory and a phenomenological design. Participants and research context A total of 13 open-ended interviews were performed with nurses working at two EDs in Sweden. Ethical considerations The study was reviewed by the Ethical Advisory Board in South East Sweden and conducted according to the Declaration of Helsinki. All participants gave consent. Findings Nurses’ experiences of dealing with older patients’ autonomy in EDs are characterized by moving in a conflicting uphill struggle, indicating obscure thoughts on how patient autonomy can be protected in an ethically challenging context. The phenomenon is further described with its meaning constituents: ‘Being hampered by prioritization under stress’, ‘Balancing paternalism and patient autonomy’, ‘Making decisions without consent in the patient’s best interests’ and ‘Being trapped by notions of legitimate care needs’. Conclusion Stressful work conditions and lacking organizational strategies in EDs contribute to nurses maintaining unjustified paternalistic care, regardless of the patient’s ability and medical condition, and questioning who has legitimacy for participating in decisions about care. The nurses’ protection and promotion of older patients’ autonomy is dependent on the opportunity, ability and willingness to create a patient relationship where the patient’s voice and preferences are valued as important. Consequently, strategies are needed to improve patient autonomy in EDs based on the idea of ‘relational autonomy’. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. (...) Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

Conscience in Reproductive Health Care responds to the growing worldwide trend of health care professionals conscientiously refusing to provide abortions and similar reproductive health services in countries where these services are legal and professionally accepted. Carolyn McLeod argues that conscientious objectors in health care should prioritize the interests of patients in receiving care over their own interest in acting on their conscience. She defends this "prioritizing approach" to conscientious objection over the more popular "compromise approach" (...) without downplaying the importance of health care professionals having a conscience or the moral complexity of their conscientious refusals. McLeod's central argument is that health care professionals who are gatekeepers of services such as abortions are fiduciaries for their patients and for the public they are licensed to serve. As such, they owe a duty of loyalty to these beneficiaries and should give primacy to their beneficiaries' interests in accessing care. This conclusion is informed by what McLeod believes is morally at stake for the main parties to the conflicts generated by conscientious refusals: the objector and the patient. What is at stake, according to McLeod, depends on the relevant socio-political context, but typically includes the objector's integrity and the patient's interest in avoiding harm. (shrink)

The emergence several years ago of SARS, with its high rate of infection and death among healthcare workers, resurrected a recurring ethical question: do health professionals have a duty to provide care to patients with deadly infectious diseases, even at some substantial risk to themselves and their families? The conventional answer, repeated on the heels of the SARS epidemic, is that they do. In this paper, I argue that the arguments in support of such a duty are wanting (...) in significant respects, and that the language of duty is simply not adequate to an understanding of all the moral dimensions of professional responses to the care of risky patients. Instead, we should speak the language of virtues and ideals if we want to do justice to the complexity of such harrowing circumstances. (shrink)

The Danish health care sector currently undergoes changes that imply a gradual transition from an evidence‐based activity model to a value‐based quality model centered on patient involvement and value‐based governance. The patient naturally occupies a central position in health care, and the transition therefore raises important questions about health care quality and how successive national health quality strategies value quality and ascribe roles and agency to patients. To explore the complexity of these quality strategies, we analyze (...) and discuss how political discourse moments influence the contents of the national health quality strategies and how variation in the construal of patient roles and agency indicates discursive struggle in Danish national health care policy. Underlying theoretical concepts are informed by New Public Management, the welfare state, health communication, and discourse theory. Our analytical approach is inspired by Critical Discourse Analysis and combines content analysis with linguistic analysis. (shrink)

Health care organization is entering a new age. Focus is increasingly shifting from individual health care institutions to interorganizational collaboration and health care networks. Much hope is set on such networks which have been argued to improve economic efficiency and quality of care. However, this does not automatically mean they are always ethically justified. A relevant question that remains is what ethical obligations or duties one can ascribe to these networks especially because networks involve many risks. (...) Due to their often amorphous and complex structure, collective responsibility and accountability may increase while individual responsibility goes down. We argue that a business ethics approach to ethical obligations for health care networks, is problematic and we propose to opt for a patient perspective. Using the classic four principles of biomedical ethics it is possible to identify specific ethical duties. Based on the principle of justice, health care networks have an ethical duty to provide just and fair access for all patients and to be transparent to patients about how access is regulated. The principle of nonmaleficence implies an obligation to guarantee patient safety, whereas the principle of beneficence implies an obligation for health care networks to guarantee continuity of care in all its dimensions. Finally, the principle of autonomy is translated into a specific obligation to promote and respect patient choice. Networks that fail to meet any of these conditions are suspect and cannot be justified ethically. Faced with daunting challenges, the health care system is changing rapidly. Currently many hopes ride on integrated care and broad health care networks. Such networks are the topic of empirical debate, but more attention should be given to the ethical aspects. Health care networks raise new and pressing ethical issues and we are in need of a framework for assessing how and when such networks are justified. (shrink)

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to (...) support all members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decision-making practice. (shrink)

The duty to provide care is foundational to the nursing profession and the work of nurses. Unfortunately, violence against nurses at the hands of recipients of care is increasingly common. While employers, labor unions, and professional associations decry the phenomenon, the decision to withdraw care, even from someone who is violent or abusive, is never easy. The scant guidance that exists suggests that the duty to care continues until the risk of harm to the nurse is (...) unreasonable, however, “reasonableness” remains undefined in the literature. In this paper, I suggest that reasonable risk, and the resulting strength of the duty to provide care in situations where violence is present, hinge on the vulnerability of both nurse and recipient of care. For the recipient, vulnerability increases with the level of dependency and incapacity. For the nurse, vulnerability is related to the risk and implications of injury. The complex interplay of contextual vulnerabilities determines whether the risk a nurse faces at the hands of a violent patient is reasonable or unreasonable. This examination will enhance our understanding of professional responsibilities and can help to clarify the strengths and limitations of the nurse's duty to care. (shrink)

This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and (...) patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (shrink)

A growing number of discharges at acute-care hospitals involve patients who are undocumented and lack legal status. Because such patients are ineligible for public assistance, long-term care facilities will routinely deny them admission. These discharges become complex discharges because of such financial barriers. If local family support is unavailable, discharging such patients to a safe and suitable location becomes increasingly difficult. These complex discharges implicate a number of ethical principles. We describe such (...) class='Hi'>complex discharge cases, apply various ethical frameworks, and call for potential policy solutions to address this growing ethical concern. (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)

Introduction: Empathy is a complex human experience that involves the subjective intersection of different individuals. In the context of nursing care in the geriatric setting, the benefits of empathetic relationships are directly related to the quality of the practice of nursing. Objective: Analyze scientific production on the benefits of empathy in the nurse–patient relationship in the geriatric care setting. Methods: An integrative review of the literature was performed using the PubMed, Cochrane, CINAHL, Scopus, PsycINFO, and Web of (...) Science databases. The articles retrieved were organized, evaluated, and classified based on the level of scientific evidence. Results: Relationships of empathy between nurses and older people were analyzed in quasi-experimental studies using different assessment tools, the majority of which had moderate levels of validity and reliability. Studies with a qualitative approach discussed the meaning of empathy in terms of the quality of care offered, compassion, and vulnerability. Discussion: Levels of empathy increase when activities are developed with the aim of teaching, sensitization, and training for relational care between nursing staff and older people. The analysis of empathetic relationships is important to the evaluation of the quality of care provided to older people. Conclusion: Empathy in the nurse–patient relationship in the geriatric care setting is an important ethical aspect that contributes to the quality of the practice of nursing. The present findings indicate the need for more robust assessment tools with adequate psychometric properties and the descriptive analysis of empathy. (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)

This study focuses on the meaningful encounters of patients and next of kin, as seen from their perspective. Identifying the attributes within meaningful encounters is important for increased understanding of caring and to expand and develop earlier formulated knowledge about caring relationships. Caring theory about the caring relationship provided a point of departure to illuminate the meaningful encounter in healthcare contexts. A qualitative explorative design with a hermeneutic narrative approach was used to analyze and interpret written narratives. The phases (...) of the analysis were naïve interpretation, structure analysis on two different levels (narrative structure, and deep structure through metaphors) and finally a dialectic interpretation. The narratives revealed the meaning of the meaningful encounter as sharing, a nourishing fellowship, common responsibility and coming together, experienced as safety and warmth, that gives, by extension, life‐changing moments, a healing force and dissipated insight. The meaningful encounter can be seen as a complex phenomenon with various attributes. Understanding the meaningful encounter will enable nurses to plan and provide professional care, based on caring science, focusing on patient and next‐of‐kin experiences. (shrink)

Background and aim Healthcare professionals are regularly exposed to moral challenges in patient care potentially compromising quality of care and safety of patients. Preventive clinical ethics support aims to identify and address moral problems in patient care at an early stage of their development. This study investigates the occurrence, risk factors, early indicators, decision parameters, consequences and preventive measures of moral problems. Method Semi-structured expert interviews were conducted with 20 interprofessional healthcare professionals from 2 university hospitals (...) in Basel, Switzerland. A Likert scale questionnaire was completed by the interviewees and analysed using descriptive and inferential statistics. Results Healthcare professionals are frequently exposed to a variety of moral problems, such as end-of-life decisions, resource allocation and assessing the patient's will or decisional capacity. Thirty-four different risk factors for moral problems are identified, e.g. patient vulnerability, divergent values or world views, inadequate resources or poor ethical climate. Twenty-one early indicators are recognised such as disagreement between healthcare professionals, patients and relatives, emotional disturbances, gut feeling or conflict of conscience. A variety of preventive measures are suggested and presented in a preventive clinical ethics support process model. The most helpful measures are early ethical conversations with colleagues, early team-internal ethical case discussions and an ethics-trained contact person on the ward. Ethics training, kerbside consultations, proactive ethics consultations, ethics screening and rounds are also considered helpful. Conclusions Clinical ethics support services should not only offer reactive and complex, but also proactive and low-threshold support for healthcare professionals, patients and relatives. (shrink)

Background:Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.Aim:To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.Method:A case study based on an anthropological field study among patients with advanced cancer in Denmark.Ethical considerations:Followed the principles of the Helsinki Declaration.Findings:Two cases illustrated situations where nurses refused patient involvement in their own case.Discussion:Focus on (...) two ethical issues, namely ‘including patients’ experiences in palliative nursing care’ and ‘relational distribution of power and knowledge’, inspired primarily by Hannah Arendt’s concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients’ palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned ‘thoughtlessness’ of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients’ invitations to involve them in their own case.Conclusion:The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that ‘thoughtlessness’ appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses’ ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare. (shrink)

In this article, we explicate evidence-based nursing (EBN), critically appraise its framework and respond to nurses’ concern that EBN sidelines the caring elements of nursing practice. We use resources from care ethics, especially Vrinda Dalmiya’s work that considers care as crucial for both epistemology and ethics, to show how EBN is compatible with, and indeed can be enhanced by, the caring aspects of nursing practice. We demonstrate that caring can act as a bridge between ‘external’ evidence and the (...) other pillars of the EBN framework: clinical expertise; patient preferences and values. Drawing on an influential EBN handbook, section 1 presents the aims and features of EBN, including the normative principle that EBN should take place within a ‘context of caring’. We aim to understand this context and whether it can be neatly detached from the EBN framework, as the handbook seems to suggest. In section 2, we highlight the grounds for resistance to EBN from the nursing community, before mounting the argument that nursing practices can be understood fruitfully through feminist care ethics and/or virtue ethics lenses. In section 3, we deepen that analysis using Dalmiya’s concepts of care-knowing and care as a hybrid ethico-epistemic virtue, which are ideally suited to the complex practices of nursing. In section 4, we bring this rich understanding of care into conversation with EBN, showing that its framework cannot be adequately theorised without paying proper attention to care. Caring can be neither an innocuous background assumption of nor an afterthought to the EBN framework. (shrink)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced by a variety (...) of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (shrink)

Excessive alcohol consumption can have adverse effects on health, and patients who suffer from alcohol use disorders are subject to much stigmatization. Nurses are often the first point of contact when patients enter the acute medical unit, and it is pivotal that this contact establishes the basis for future collaboration. The aim of this study is to elucidate nurses’ lived experience of providing care to patients suffering from alcohol use disorders. This present study has a qualitative (...) research design, anchored in phenomenological and hermeneutical methodology as described in reflective lifeworld research. Ten in‐depth, open‐ended interviews with nurses working in an acute medical unit were conducted. The analysis showed that providing care to patients suffering from alcohol use disorders was a highly complex task to accomplish. This required the nurse to engage with the patient in a sensitive cooperation in order to be dealing with the intricacy of the patient's life situation and balancing care between standardized procedures and the complexity of the patients. Further, a two‐sided feeling of responsibility emerged: a professional responsibility and a personal responsibility causing the provision of care as being caught between feelings of despondency and resignation. Nurses lack opportunities for being creative in determining how to provide care; instead, patients' perspectives of well‐being should be taken into account and should guide the provision of a meaningful care. Nurses must call for opportunities to deviate from the firmly established procedures restraining the care of this population. (shrink)

Aim:This study explores experiences of patients suffering from Korsakoff’s syndrome. It contributes to improved reflection on the value of patient knowledge.Background:An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients’ individual needs necessary to provide good care. The information given by patients suffering from Korsakoff’s syndrome might be mistaken, invented and even not true. The value of these patients’ experiences and (...) knowledge had not been researched to date.Method:Data from six in-depth interviews were analysed concurrently through the constant comparative method.Ethical considerations:The principles of voluntariness, confidentiality and anonymity were respected during the research process.Findings:Four important themes within patients’ knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective.Conclusion:This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients’ unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome. (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)

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)

Psychological trauma is ubiquitous, an often hidden yet influential factor in care across clinical specialties. Interdisciplinary health professions education is mobilizing to address the importance of trauma-sensitive care. Given their attention to complex human realities, the health humanities are well-poised to shape healthcare learners’ responses to trauma. Indeed, many such arts and humanities curricula propose narrative exercises to strengthen empathy, self-reflection, and sensitive communication. Trauma, however, is often unwordable, fragmentary, and physically encoded, incompatible with storying methods. This (...) article presents a recent innovation, the Art is Patient seminar series, which focuses on aesthetic exercises to help learners access and share non-verbal, embodied, and relational responses to art. Based in an art museum context, it provides successive experiences of approaching, witnessing, and engaging with visual art as an analogue to developing trauma-sensitive relationships. Reflections on the process locate the seminar vis-à-vis health humanities practices, aesthetics, and trauma-informed approaches. (shrink)

For each one of the approximately 800,000 people who die from suicide every year, an additional twenty people attempt suicide. Many of these attempts result in hospitalization or in contact with other healthcare services. However, many personal, educational, and institutional barriers make it difficult for healthcare professionals to care for suicidal individuals. We reviewed literature that discusses suicidal patients in healthcare settings in order to highlight common ethical issues and to identify knowledge gaps. A sample was generated via (...) PubMed using keywords “[(ethics OR *ethic*) AND suicid*] AND [English (Language) OR French (Language)]” (final N = 52), ethics content was extracted according to scoping review methodology, and categorized thematically. We identified three main areas posing ethical challenges for health professionals caring for suicidal individuals and their families. These were: (1) making clinical decisions for patients in acute care or when presented with specific circumstances; (2) issues arising from therapeutic relationships in chronic care, and (3) organizational factors. There is considerable uncertainty about how to resolve ethical issues when caring for someone who is suicidal. The stigma associated with suicide and mental illness, problems associated with risk–benefit assessments, and the fear of being held liable for malpractice should a patient die by suicide were overarching themes present across these three categories. Caring for suicidal patients is clinically and ethically challenging. The current literature highlights the complexity and range of decisions that need to be made. More attention should be paid to the difficulties faced by healthcare professionals and the development of solutions. (shrink)

In this essay we discuss an ethical dilemma that recently arose in our institution, involving healthcare workers who lamented the requirement to shave their facial hair as a condition to care for COVID-19 patients. The essay represents a genuine attempt to grapple with the dilemma sensibly and vigorously. We first provide a brief introduction, focusing on the tension between religious tolerance and the institutional obligation to optimize patient care and public health in the age of COVID-19. We (...) then discuss the complex relationship between facial hair and cultural as well as religious factors throughout history. Next, we make a case, based on several principles in Islam jurisprudence, that Muslim healthcare professionals in our institution should be expected to shave their facial hair so they could care for COVID patients. We end with considering two alternative solutions that were offered in the literature. (shrink)

It is evident, in the face of the COVID-19 pandemic that has physicians confronting death and dying at unprecedented levels along with growing data suggesting that physicians who care for dying patients face complex emotional, psychological and behavioural effects, that there is a need for their better understanding and the implementation of supportive measures. Taking into account data positing that effects of caring for dying patients may impact a physician’s concept of personhood, or “what makes you, (...) ‘you’”, we adopt Radha Krishna’s Ring Theory of Personhood (RToP) to scrutinise the experiences of physicians working in intensive care units (ICU) using a fictional scenario that was inspired by real events. The impact of death and dying, its catalysts, internal constituents, external factors, dyssynchrony, and buffers, specific to ICU physicians, were identified and explored. Such a framework allows for ramifications to be considered holistically and facilitates the curation of strategies for conflict resolution. This evaluation of the RToP acknowledges the experience and wide-ranging effects it has on ICU physicians. As such, our findings provide insight into their specific needs and highlight the importance of support on a personal and organisational level. Although further research needs to be conducted, the RToP could serve as the basis for a longitudinal assessment tool supported by the use of portfolios or mentorship due to their provision of personalised, appropriate, specific, timely, accessible and long-term support. (shrink)

To enhance patient care in the inevitable conditions of complexity that exist in contemporary healthcare, collaboration among healthcare professions is critical. While each profession necessarily has its own primary focus and perspective on the nature of human healthcare needs, these alone are insufficient for meeting the complex needs of patients (and potential patients). Persons are inevitably contextual entities, inseparable from their environments, and are subject to institutional and social barriers that can detract from good care (...) or from accessing healthcare. These are some of the reasons behind current movements to develop competency frameworks that can enhance cross‐disciplinary communication and collaboration. No single profession can claim the big picture. Effective teamwork is essential and requires members of diverse professions to understand the nature of each other's knowledge, skills, roles, perspectives, and perceived responsibilities so that they are optimally utilized on behalf of patients and their families. Interdisciplinary approaches to care permit different aspects of a person's needs to be addressed seamlessly and facilitate the removal of obstacles by engaging the range of resources exemplified by the different professions. Additionally, collaborative efforts are needed to influence policy changes on behalf of individual and social good and to address root causes of poor health especially as these impact society's most vulnerable. Here, we explore both the benefits and the risks of an uncritical acceptance of competency frameworks as a way to enhance interdisciplinary communication. We highlight the importance of anchoring proposed competency domains in the reason for being of a given profession and exemplify one way this has been accomplished for advanced practice nursing. Additionally, we argue that having this mooring, permits integration of the various competencies that both enhances professional moral agency and facilitates interdisciplinary collaboration to further the mutual goals of the healthcare professions on behalf of quality patient care. (shrink)

AimsThis study evaluates a protocol for early, routine ethics consultation for patients on extracorporeal membrane oxygenation to support decision-making in the context of clinical uncertainty with the aim of mitigating ethical conflict and moral distress.MethodsWe conducted a single-site qualitative analysis of EC documentation for all patients receiving ECMO support from 15 August 2018 to 15 May 2019. Detailed analysis of 20 ethically complex cases with protracted ethics involvement identifies four key ethical domains: limits of prognostication, bridge to (...) nowhere, burden of treatment and system-level concerns. There are three subthemes: relevant contextual factors, the role of EC and observed outcomes. Content analysis of transcripts from interviews with 20 members of the multidisciplinary ECMO team yields supplemental data on providers’ perceptions of the impact of the early intervention protocol.ResultsLimited outcome data for ECMO, unclear indications for withdrawal, adverse effects of treatment and an obligation to attend to programme metrics present significant ethical challenges in the care of this patient population. Upstream EC mitigates ethical conflict by setting clear expectations about ECMO as a time limited trial, promoting consistent messaging among multiple services and supporting surrogate decision-makers. When ECMO becomes a ‘bridge to nowhere’, EC facilitates decision-making that respects patient values yet successfully sets limits on non-beneficial use of this novel therapy.ConclusionData from this study support the conclusion that ECMO poses unique ethical challenges that necessitate a standardised protocol for early, routine EC—at least while this medical technology is in its nascent stages. (shrink)

Background Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; (...) 21 participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants’ perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.Results The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.Conclusion Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT’s utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD. (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)