Recent research shows that 20% of children face a form of chronic illness during childhood. The illness and its associated physical and mental challenges can affect such children's ‘being’ and influence how they develop as people. A significant aspect of a child's life that can be profoundly influenced by a chronic illness is education. This study employed a phenomenological approach to shed more light on the special education of such children. Temporality and embodiment were examined as two (...) philosophical bases in the phenomenological education of children with such chronic illnesses. Also, this educational model highlights that phenomenological understanding, and the healing connection in education, can increase the affected children's positive self-concept, directing them towards a satisfying and happy life. (shrink)

This article studies the phenomenology of chronic illness in light of phenomenology’s insights into ecstatic temporality and freedom. It shows how a chronic illness can, in lived experience, manifest itself as a disturbance of our usual relation to ecstatic temporality and thence as a disturbance of freedom. This suggests that ecstatic temporality is related to another sort of time—“provisional time”—that is in turn rooted in the body. The article draws on Merleau-Ponty’s Phenomenology of Perception and Heidegger’s Being and Time , (...) shedding light on the latter’s concept of ecstatic temporality. It also discusses implications for self-management of chronic illness, especially in children. (shrink)

Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy’s narrative, situated (...) in the context of what is known about ethical challenges in the care of children with chronic critical illness (CCI), serves as a case study of the gap in available ethical resources to guide families in their approach to difficult decision making for children with significant medical complexity and CCI. Our author group, inclusive of parents of children with complex medical needs and medical professionals, identifies domains of ethical challenges facing families of children with CCI and we highlight the development of family/caregiver-oriented ethics resources as an essential expansion of pediatric bioethics. (shrink)

This book examines the many ethical issues that are encountered in the Pediatric Intensive Care Unit. It supports pediatricians, nurses, residents, and other providers in their daily management of critically ill children with the dilemmas that arise. It begins by examining the evolution of pediatric critical care, and who is now impacted by this advancing medical technology. Subsequent chapters explore specific ethical concerns and controversies that are commonly encountered. These topics include how to conduct end-of-life discussions with families facing (...) a myriad of challenging choices. It goes on to explore the concept of futility, and what that does and does not mean in the pediatric ICU setting. Controversial subjects such as children as organ donors, particularly using donation after cardiac death, in addition to issues surrounding the declaration of brain death are covered. Additional chapters address resource allocation, and also analyze the use of long-term technology in chronically critically ill children. Chapters include case examples with guidance on how to work through similar difficulties and decision-making. While this book is specifically targeted for care providers at the ICU bedside, it is also of benefit to medical students, students in bioethics, practicing ethical consultants and families who are dealing with critically ill children. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap (...) by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, (...) infection, disruption of family life, and the intensive utilization of resources—combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay.In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to making clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital. (shrink)

Background and aims. In pediatrics receiving a diagnosis of a chronic condition is a matter that involves caregivers at first. Beyond the basic issues of caring for the physical body of the ill child, caregivers’ manners of facing and making sense of the disease orient and co-construct their children’s sensemaking processes of the disease itself. The aim of this article is to explore the experience of a rare chronic illness, Hereditary Angioedema (HAE), in pediatrics, from the caregivers’ perspective. Hereditary (...) Angioedema is characterized by subcutaneous swellings that can involve the mucosal tissues of external as well as internal parts of the body, manifesting in a highly variable and unpredictable way in terms of localization, severity, and frequency. Materials and methods. Within a qualitatively-driven research design, we conducted a qualitative narrative semiotic analysis of n.28 mothers’ narratives on their children’s disease experience. Narratives were collected by an ad hoc interview on three domains of the disease experience: A. interpretation of the disease variability; B. dialogical processes; C. management of the disease. Subsequently, we executed a TwoStep cluster analysis for categorical data to detect cross-sectional profiles of the maternal sensemaking processes of the disease. Results. The coding grid was built analyzing the characteristic of the narrative links that orient the connection between the elements of the experience within each domain: A. the connection among events, for the domain of the interpretation of the disease variability; B. the connection between self and other, for the domain of the dialogue; C. the connection among sensemaking and actions, for the domain of the management of the disease. Results from cluster analysis show three narrative profiles: 1. adempitive; 2. reactive; 3. dynamic. Discussion. Profiles will be discussed in the light of the general conceptual framework of the Sense of Grip on the Disease (SoGoD) highlighting the importance of those sensemaking processes which, instead of relying on a coherent and close interpretation of the disease, are characterized by a degree of tolerance for the uncertainty and the unknowingly. (shrink)

Recent developments in novel therapies for neuromuscular diseases offer parents new perspectives on their affected children's future. This article examines how the emergence of new therapies impacts the lives of parents of children with Duchenne muscular dystrophy or spinal muscular atrophy type 2, two genetic neuromuscular disorders characterized by progressive muscle degeneration. Aiming for a first‐person perspective, fieldwork was conducted utilizing participant observation, semistructured interviews, and several internet sources. Six families with a total of 12 persons, all living (...) in Denmark, were included in the interviews. Two types of parents were identified who were at opposite ends in dealing with the new therapies—the cure optimists and the cure pragmatists. Different hopes resulted in different narratives for their children's futures. The article raises questions about how and when children with chronic diseases should be involved in their parent's hopes for a cure and highlights the dilemmas facing health professionals working in the field of children with chronic diseases for which the prospects of a cure are improving. We conclude that health professionals must find a way to carefully balance guidance and information about experimental medicines, including the fact that experimental medicine sometimes fails, does not work as well as hoped for, or does not become available, with sustaining parental hopes for their children's future. (shrink)

Background: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation.Objectives: To examine the characteristics and location of death among hospitalised children, investigate yearwise trends in these characteristics and test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health would lead (...) to significant changes in the characteristics of death among hospitalised children.Methods: Routine administrative data from one large tertiary-level UK children’s hospital was examined over a 7-year period for children aged 0–18 years. Demographic details, location of deaths, source of admission , length of stay and final diagnoses were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test , χ2 test and Cochran–Armitage test .Results: Of the 1127 deaths occurring in hospital over the 7-year period, the majority were among infants. The main diagnoses at death included congenital malformations , perinatal diseases , cardiovascular disorders and neoplasms . Most deaths occurred in an intensive care unit environment , with a significant increase over the years . There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort . Infants with congenital malformations and perinatal conditions were more likely to die in an ICU , and older children with malignancy outside the ICU . Children stayed for a median of 13 days on a hospital ward before being admitted to an ICU where they died.Conclusions: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study. (shrink)

This ground-breaking textbook focuses on the use of play techniques and games to facilitate the positive behavioral, social, and emotional development of children with and without special needs. The chapters in this book center on the use of games and play to facilitate emotional expression, develop friendships and encourage appropriate behaviors in community contexts, such as schools, that are critical to children's adaptation in the world. For example, there are chapters explaining the importance of playground interactions for (...) class='Hi'>children, role play to develop social skills and learn to express emotions, games to facilitate appropriate behavior and prosocial development in the classroom, and play as an outlet for the expression of emotion and development of children with special needs, including medical and mental health conditions. Readers will learn skills for coaching positive behaviors in individual and group settings, and will learn strategies to enhance social skills and help children develop emotionally in a variety of contexts (e.g., classrooms) and circumstances (e.g., having chronic illnesses or coping with mental health issues that make social engagement more challenging). Important "take-home" messages and critical techniques for fostering children's skills will be presented, and the engaging material presented in the chapters will facilitate knowledge of what to do and how to improve children's social and emotional development through play techniques and games. -- Back cover. (shrink)

For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention (...) to why clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (shrink)

Background Serious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their moral experiences, defined as their sense of fulfillment towards personal values and beliefs. Research aims To explore children’s actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression. Research design A focused ethnography was conducted using the moral experiences framework with data from key (...) informant interviews; participant observations, semi-structured interviews, and practice-based research (art-making) with 10 children with OI; and local documents. Participants and research context The study was conducted at a pediatric, orthopedic hospital. Ethical considerations This study was approved by McGill University Institutional Review Board. Findings/results Children expressed desires to participate in their care, but sometimes lacked the necessary resources and encouragement from healthcare providers. Art-making facilitated children’s voice and participation in health-related discussions. Conclusions Healthcare providers are recommended to consider the benefits of art-making and educational resources to reduce discrepancies between children’s actual and desired participation in care and promote positive moral experiences. (shrink)

BackgroundThere is little information on how adverse experiences in early life are associated with the risk of having a child with health problems and whether the health of racial and gender minority groups would be particularly compromised if they have developmentally disabled children.ObjectiveBy integrating life-course perspectives and the intersectionality framework, we examine the extent to which parents’ early-life adversities are associated with having children with DD or other health issues and whether the association between having DD children (...) and parental health varies across race–gender groups after accounting for ELAs.MethodsUsing data from Black and White parents from the Midlife in the US Study, we employed multinomial logistic regression models to investigate the degree to which ELAs are associated with parenting types and multiple regression models with a three-way interaction term to investigate whether the gender–parenting type association differs by race.ResultsWith more adversities, the probability of having children with health issues increases for all race–gender groups, but most dramatically for Black women. Having DD children is associated with more chronic illnesses and functional limitations for women than men, with the largest burden for Black women, yet neither gender nor racial differences in depressive symptoms. Our results highlight that while raising children with DD takes a toll on the health of all parents, the strain might be larger for Black mothers.ConclusionThe adverse effects of parenting a child with DD is more pronounced for Black women than for other race–gender groups indicating opportunities to promote community-based programs for these parents. (shrink)

In this article, we present findings from a qualitative study examining how young women experience being long‐term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long‐term bedridden from the vantage point of being fully or partially recovered. Informed by a phenomenological theoretical perspective, the researchers applied a narrative (...) methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone. Based on our findings, we argue that the experience of being long‐term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness. (shrink)

Different questions than the one originally posed need to be askedVince and Petros describe the heartrending situation of an adolescent boy who has been diagnosed with terminal respiratory failure and for whom no further beneficial medical treatments are available. All of the members of the healthcare team and the boy’s parents are in agreement that mechanical ventilation should be withdrawn with the expectation that the child will die shortly thereafter. Conflicting views arose, however, as to whether the boy’s sedation should (...) be lifted so that he could be informed of his impending death. The authors lay out the opposing arguments, for and against informing the child of his impending death, in some detail. Rather than specifically critiquing those arguments, I would like to comment on several ancillary issues that were not explored in the paper and, in doing so, point to some ways in which end of life decision making processes could perhaps be improved in the future.ADVANCE CARE PLANNINGThe analysis of this case highlights the potential value of ongoing and early introduction of discussions around death and dying with chronically and terminally ill persons, even when the person is a child . In the paper, we are given relatively few hints about the boy’s understanding of the nature of his disease . It is unclear what conversations took place with him during the …. (shrink)

Healthcare delivery and access, both in the United States and globally, were negatively affected during the entirety of the COVID-19 pandemic. This was particularly true during the first year when countries grappled with high rates of illness and implemented non-pharmaceutical interventions such as stay-at-home orders. Among children with special healthcare needs, research from the United Kingdom (U.K.) has shown that the pandemic response uniquely impacted various aspects of their care, including decreased access to care, delays in diagnosis, and poorer (...) chronic disease control. In response to these findings, and to begin to comprehend whether the concerning findings from the nationalized system of healthcare in the U.K. extend to the highly dissimilar United States (U.S.) healthcare context, we reviewed the literature on alterations in access to and delivery of care during the early stages of the COVID-19 pandemic for children with special healthcare needs in the U.S. We then utilize these findings to consider the ethical and policy considerations of alterations in healthcare provision during pandemics and crisis events in the U.K. and U.S. and make recommendations regarding how the needs of CSHCN should be considered during future responses. (shrink)

Chronic kidney failure is a serious somatic disease. Addressing the issue of living with a chronic disease means fully considering the patients’ entourage, their families, and those close to them, especially their children and spouses.Objectives: The present paper focuses on the couple’s psychological experience when one of them suffers from a chronic disease, in this instance kidney disease. In particular, how is the spouse affected by the treatment provided? The aim is not only to see how care for sick (...) people can be improved, but also, more specifically, how relatives and especially partners can receive attention.Methodology: A qualitative approach is not only adopted, being based on the psychotherapeutic follow-up of the partners of patients with chronic kidney disease, but also of the patients themselves, addressing the matter of their life as a couple. Three couples were considered, and two case studies are presented here. The issues that cut across these different situations are examined.Results and Discussion: Some couples show considerable resourcefulness. However, over the years, that capacity for adaptation and inventiveness can also be interrupted by the periods of greater suffering and even despair, especially when the somatic pathology becomes chronic. Many spouses talk about how living with a sick partner weighs down on them, causing severe fatigue. Some aspects of the illness can also become traumatic. The disease regularly disrupts the daily life of the couple and the family. This leads to a reworking of family relations. Each couple has its own history with the condition. As it emerges, it can disrupt the bonds of filiation, especially when the illness is hereditary. Making psychological care more accessible to the partners involved constitutes a major challenge for our hospital care systems. (shrink)

As infancy is characterized by rapid physical growth and critical periods of development, disruptions due to illness or disease reveal vulnerability associated with this period. Spinal cord injury has devastating consequences at any age, but its onset neonatally, at birth, or within the first year of life multiplies its impact. The immediate physical and physiological consequences are obvious and immense, but the effects on the typical trajectory of development are profound. Activity-based restorative therapies capitalize on activity-dependent plasticity of the neuromuscular (...) system below the lesion and when provided to children with SCI aim to improve the child’s neuromuscular capacity, health and quality of life. This is a report of an infant with a cervical SCI at birth resulting in paralysis of leg and trunk muscles and paresis of arm and hands who was enrolled in an ABRT program at 3 years of age. After 59 sessions of ABRT, the child demonstrated significant improvements in trunk control and arm function, as well as social and emotional development. Despite the chronicity of injury and low expectations for improvement with therapeutic interventions, ABRT had a positive impact on the child’s physical capacity and provided benefits across multiple developmental domains. (shrink)

Trends of recent demographical development show that the world's population is aging at its fastest clip ever. In this paper, I ask whether adult children should support the life of their chronically ill parents as long as it takes, and I analyze the matter with regard to the doctrine of Confucianism. As the virtue of filial piety plays a central role in the ethics of Confucianism, adult children will face stringent demands while giving care to their (...) class='Hi'>chronically ill parents. In this paper, I argue that because of the extreme moral demands Confucians impose on adult children, Confucianism is an objectionable moral theory. I also argue that if Confucianism allows these agents to opt out of the caregiving tasks, it may cause conflict with its own doctrines. For these reasons, I conclude that Confucianism cannot provide a defensible response to the problem of long-term caregiving. (shrink)

Objective Recent legislation mandating the inclusion of children in clinical trials has resulted in an increase in the number of children participating in research. We reviewed the literature regarding the reasons parents chose to accept or decline an invitation to enrol their children in clinical research. Methods We searched for qualitative studies, written in the English language that considered the experiences of parents who had been invited to enrol their children in research. SCOPUS and Web of (...) Knowledge electronic databases and reference lists of retrieved articles and review papers were searched. Retrieved articles were synthesised using the narrative synthesis method. Results 16 qualitative studies exploring the experiences of parents living in five countries whose children had a range of health conditions of varying severity were included. The health status of the child appeared to influence parents' reasons for participation. Parents whose children had life threatening conditions often considered they had no choice but to participate and many welcomed the innovation offered through research participation. Such parents also viewed the risks of research less negatively than those whose children were healthy or in the stable stage of a chronic condition. This raises questions regarding the voluntariness of informed consent by such parents. Conclusions A tailored approach is needed when discussing research participation with parents of eligible children. While parents of healthy children may be more open to discussions of altruism, those whose children have life threatening illnesses should be given adequate information about the alternatives to, and risks of, research participation. (shrink)

Embodied knowledge in chronic illness and injury When people experience chronic illness or serious injury, changes occur not just within their physical bodies but also in their embodiments, that is, how they view the world through their bodies. For such patients, dualistic (mind–body) notions of the body as object and the mind as subject can devalue experiences that are necessary for healing and for managing everyday problems related to their illness or injury. Nurses need to be able to guide people (...) with illness or injury to new levels of wellness, but may lack appropriate theoretical conceptualizations. Philosophies that underlie embodied knowledge — in particular, philosophies of Merleau‐Ponty and Polanyi — were explored yielding two new ways to understand the body. The body as ‘silent partner’ fosters an appreciation of the body's own subjectivity that can be enhanced in nursing care through sensitivity, listening, and creative coaching. Nurses can assist their patients to identify new and positive understandings of what their bodies mean to them after bodily changes. The body as ‘informant’ holds much promise for solving some of the everyday problems that people with chronic illness or injury experience. By using phenomenological and other naturalistic methods, researchers and patients can find clues to solving such problems, clues that are known through daily living but hidden beneath conscious awareness. As a result, some of the practical know‐how of the body as ‘informant’ can be transformed into testable nursing interventions. (shrink)

Safe and healthy housing conditions are critical to improving population health, particularly for the most vulnerable – young children, senior citizens, and individuals with chronic illnesses and disabilities – who spend more time at home and are more susceptible to illness and injury. Across the country, millions of Americans are exposed to lead, radon, asbestos, volatile organic compounds, pests, mold, carbon monoxide, and tobacco smoke in the home, affecting the air they breathe and the water they drink. These household (...) hazards are also associated with a wide range of illnesses and injuries, including asthma, cancer, falls, respiratory infections, and mental health issues. Legal and policy interventions can assist communities grappling with the adverse impacts of poor housing conditions and improve the health and safety of all residents, including vulnerable populations. (shrink)

Living with a chronic condition represents a strenuous experience that often could be lived as a sequence of waiting and crisis times. Therapeutic path incidents could represent however a catalysts and revelatory time, useful to patients to discover their own resources. A qualitative study according to the phenomenological hermeneutic perspective was conducted to understand the kind of skills expressed by the patients during a difficult episode, and the characteristics that identify patients who can overcome them better. From September 2019 to (...) August 2020 twenty-three patients followed-up in four Hospital Units of Northeastern of Italy were enrolled. All the patients described an episode linked whit their pathological condition; they mentioned mainly supportive, reactive, or behavioral strategies and an acceptance attitude. The sample characteristics may explain the recurring acceptance attitude; however, the younger individuals, those with a higher level of education and those who faced precedent negative life experiences seem to better overcome challenging events. It can’t be taken for granted that patients possess all the skills necessary to overcome the frequent challenging episodes they have to face; for this reason, healthcare professionals should assess their learning and reactive attitude in order to tailor for them therapeutic education paths. (shrink)

How much should adult children sacrifice to care for their chronically ill parents? If parents commit crimes, should their children report them to the authorities? What are the demands of filial obligation in these cases? Traditionally, Confucians have favoured a somewhat stringent view of filial obligation. By this view, adult children have to provide long‐term care to their parents as well as place their parents' interests over any concerns of justice, should the two happen to conflict. (...) I will call these stringent views the principles of filial caregiving and filial favoritism. In this paper, I will use Scanlon's Contractualism to analyze the two principles, and juxtapose the Contractualist analysis with the Confucian filial piety. By doing this, we sharpen Confucianism's critical elements, and highlight the coherence of Contractualism with this ethical ideology from a non‐analytic tradition. (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)

ABSTRACT Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex in (...) such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance. (shrink)

One does not just live in a crisis: a crisis calls for action. Etymologically, from the Greek krisis, it is a turning point or a moment of decision. It not only alters perception; it alters the demands for living. It stands out from the everyday. If we follow Gail Weiss (2008), we could say that a crisis is a moment when the ground called “ordinary life” is interrupted in such a way that it no longer functions as an out-of-awareness backdrop (...) but itself becomes the visible figure. But what happens when the ground is already permeated by crises, large and small? How should we think about crisis when we cannot call upon a simple binary—times of crisis and somehow livable normal times? How to think, conceptually, about those communities who live with what is variously termed “slow death” (Berlant 2011), “slow violence,” (Nixon 2011) or “chronic crisis” (Vigh 2008) that make the everyday a source of such continual threat that crisis and non-crisis shade into one another? I ask these questions in the context of my twenty-year history of research in African American communities in which families are caring for children with disabilities and chronic illnesses. (shrink)

Which goods should we be able to buy and sell on the market and, alternatively, which goods should remain sheltered from the market? For many goods in modern societies, this has proven to be a thorny question. Moreover, it is a question that cannot be answered by way of a theoretical shortcut, that is, by attributing certain general values (or disvalues) to the market and inferring from these general attributes that the market is (or isn’t) the best institution to govern (...) the provision of a specific good. Therefore, in the first part of this work, three theoretical building blocks are proposed to frame the way we should handle the market question. First, a social theory is formulated which treats the market as one out of five main socio-economic modes of provision, the others being public provision, professional provision, informal provision and self-provision. Second, in choosing the best institutional framework for a specific good, it is argued that we should not restrict ourselves to the option of implementing one of these modes of provision only. Special attention should be paid to the option of ‘institutional pluralism’, i.e. instituting a market and a non-market alternative simultaneously for the same good. Both the attractions and the limits of such an institutional pluralism are discussed. Third, in making institutional choices about these modes of provision, we need a normative theory providing the moral criteria to guide our choices. Here a capability theory is proposed, which consists of three central principles, parallel to a distinction between three types of capabilities: those that are ‘immoral’, those that are ‘morally required’ and those that are merely ‘morally permissible’. The principles prescribe avoiding the realization of the immoral capabilities and promoting the realization of morally required and permissible capabilities. In the second part, this threefold framework is applied to three specific goods. These are security (protection against criminal threats), media (mass communication by media such as television, radio and the press) and care (caring activities provided on a structural basis to dependents such as care for children, chronically ill and elderly people). For each of these goods a capability analysis shows that the most appropriate institutional framework is institutional pluralism. In the case of security this is a pluralism of market and public provision, in the case of media a pluralism of market and professional provision and in the case of care a pluralism of market and informal provision. In the final chapter I investigate the conditions that have to be fulfilled for these institutionally pluralist arrangements to be stable, that is, to have a robust chance of survival. The main challenge to stability comes from the dynamic toward capital accumulation that is inherent in contemporary capitalism, and if left unchecked requires an ongoing conversion of non-market practices into markets. Two solutions are proposed to counter this threat: a general working time reduction which reduces capital accumulation and a strategy of publicly funded investment of accumulated capital in non-market parts of institutionally pluralist practices. (shrink)

The following article is a response to the position paper of the Hastings Center, "Ethical Challenges of Chronic Illness", a product of their three year project on Ethics and Chronic Care. The authors of this paper, three prominent bioethicists, Daniel Callahan, Arthur Caplan, and Bruce Jennings, argue that there should be a different ethic for acute and chronic care. In pressing this distinction they provide philosophical grounds for limiting medical care for the elderly and chronically ill. We give a (...) critical survey of their position and reject it as well as any attempt to characterize the physician-patient relationship as a commercial contract. We emphasize, as central features of good medical practice, a commitment to be the patient's agent and a determination to acquire and be guided by knowledge. These commitments may sometimes conflict with efforts to have the physician serve as an instrument of social and economic policies limiting medical care. Keywords: acute, agent, autonomy, chronic, knowledge, obligations, rights CiteULike Connotea Del.icio.us What's this? (shrink)

Chronic illness is a major cause of disability, especially in women. Therefore, any adequate feminist understanding of disability must encompass chronic illnesses. I argue that there are important differences between healthy disabled and unhealthy disabled people that are likely to affect such issues as treatment of impairment in disability and feminist politics, accommodation of disability in activism and employment, identification of persons as disabled, disability pride, and prevention and “cure” of disabilities.

Some theorists have argued that we should understand the notion of free will from a functional perspective: free will just is our ability to choose effectively and adaptively in an ever-changing environment. Although far from what many philosophers normally mean by free will, those who adopt this biological-evolutionary perspective can clearly define and defend a notion of personal responsibility. One consequenceof this point of view is that addicts become responsible for their actions, for at each choice point, there is a (...) real sense in which the addict could have elected not to use or abuse. As a result, it has been argued that addiction is not a disease, that addictive behavior is voluntary, and that sometimes it is even rational. This paper defends a different way of thinking about addiction, one that aligns it with other complex chronic illnesses. The perspective put forth here suggests that these discussions about responsibility and free will represent an over-simplified and neuropsychologically inaccurate portrait of basic human capacities for behavioral choice. (shrink)

To address the growing costs associated with chronic illness care, many countries, both developed and developing, identify increased patient self‐management or self‐care as a focus of healthcare reform. Health coaching, an implementation strategy to support the shift to self‐management, encourages patients to make lifestyle changes to improve the management of chronic illness. This practice differs from traditional models of health education because of the interactional dynamics between nurse and patient, and an orientation to care that ostensibly centres and empowers patients. (...) The theoretical underpinnings of coaching reflect these differences, however in its application, the practices arranged around health coaching for chronic illness self‐management reveal the social regulation and professional management of everyday life. This becomes especially problematic in contexts defined by economic constraint and government withdrawal from activities related to the ‘care’ of citizens. In this paper, we trace the development of health coaching as part of nursing practice and consider the implications of this practice as an emerging element of chronic illness self‐management. Our purpose is to highlight health coaching as an approach intended to support patients with chronic illness and at the same time, problematize the tensions contained in (and by) this practice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:My Patient, TeacherMarissa BlumI remember meeting Beatriz about 12 years ago when security was called to her office visit room by the fellow doctor-in-training who was seeing her. She was yelling loudly about her pain medications, causing a terrific commotion. I stepped in to relieve the fellow and tried to calm her down and move the visit along without anyone getting hurt or further upset. And from then on, (...) Beatriz was moved to my schedule from the fellow's for her monthly visits for her knee pain and refills of fentanyl and oxycodone. She had terrible knees and walked with a cane, almost always accompanied by her son. At one point, she came to our clinic asking to be seen but couldn't, and then fell onto her knees and rolled onto her back in the wait-room, clutching and waiving her cane, expelling expletives and railing at anyone who wanted to help but denying them that privilege. It was as though she relished exposing her pain and a lifetime of hardship for all to confront. I came down from my office to talk with her and when I couldn't convince her to get up on her own, we called EMS to assist and they took her away in an ambulance.For the first few years, I recoiled seeing her name on my schedule each month. I knew I would have to endure a barrage of labile emotions and complaints not just about her constant pain and feelings of inadequacy of her pain medications, but also about her other doctors and how they don't respond to her, or about how the rest of her family shows no care for her. Initially, these visits were hard because they were unpredictable and Beatriz also had bipolar disorder and maybe borderline personality too. I never knew which type of Beatriz I would walk in to see: Angry, tearful, lamentful, and all of those faces were difficult for me. But we met every month for years. During those visits, which almost always were attended by her son, who quietly sat by to either gently rebuff or passively agree with her, I learned so much about her and her very hard life. She was left to raise two children alone, unskilled and ill with hepatitis C, which led to liver cancer, followed later by breast cancer. She chose not to pursue additional therapy for breast cancer, expressing a fatalistic view of her life and intimating she in some way deserved the ailments that she developed. She saw me for disabling knee and hip arthritis that took away her independence and ability to scale the outdoor steps to her second-floor apartment and required the assistance of her son to dress, bathe and care for her. Beatriz never knew this, and I didn't share [End Page 18] it with her, but on one of my early morning drives into North Philadelphia, I saw her on a sun-baked unfriendly street, struggling to move around with her walker. She had many reasons to be angry, and the 30 minutes I spent with her every month became a catharsis for her to unload all that she felt.During my medical training, I encountered hundreds of patients—mostly all in the hospital setting—who might be characterized as difficult and understandably; no one who is relegated to the hospital setting, acutely or chronically ill and requiring inpatient care, could possibly be in the best mood of their lives. Somehow, it was easier for me to care for patients in these snapshot encounters that I controlled. I dictated my time in the room and didn't necessarily have to encounter the same challenging patient longitudinally, which made certain encounters much easier to bear. I realize now I wasn't fully processing the burdens carried by these patients in a way that enabled me to be a compassionate and fully present physician to them. It was an adaptation to the fast-paced life of residency, where one just has to get the job done and move on to the next task without time to process or reflect on difficult patient interactions. This is a... (shrink)

The following article is a response to the position paper of the Hastings Center, “Ethical Challenges of Chronic Illness”, a product of their three year project on Ethics and Chronic Care. The authors of this paper, three prominent bioethicists, Daniel Callahan, Arthur Caplan, and Bruce Jennings, argue that there should be a different ethic for acute and chronic care. In pressing this distinction they provide philosophical grounds for limiting medical care for the elderly and chronically ill. We give a (...) critical survey of their position and reject it as well as any attempt to characterize the physician-patient relationship as a commercial contract. We emphasize, as central features of good medical practice, a commitment to be the patient's agent and a determination to acquire and be guided by knowledge. These commitments may sometimes conflict with efforts to have the physician serve as an instrument of social and economic policies limiting medical care. (shrink)

Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients presenting (...) with chronic illnesses and navigating as “lay experts” of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring “for” and collaboratively “with” this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making. (shrink)

The world’s first living donor liver transplant from an HIV-positive mother to her HIV-negative child, performed by our team in Johannesburg, South Africa (SA) in 2017, was necessitated by disease profile and health system challenges. In our country, we have a major shortage of donor organs, which compels us to consider innovative solutions to save lives. Simultaneously, the transition of the HIV pandemic, from a death sentence to a chronic illness with excellent survival on treatment required us to rethink our (...) policies regarding HIV infection and living donor liver transplantation. Although HIV infection in the donor is internationally considered an absolute contraindication for transplant to an HIV-negative recipient, there have been a very small number of unintentional transplants from HIV-positive deceased donors to HIV-negative recipients. These transplant recipients do well on antiretroviral medication and their graft survival is not compromised. We have had a number of HIV-positive parents in our setting express a desire to be living liver donors for their critically ill children. Declining these parents as living donors has become increasingly unjustifiable given the very small deceased donor pool in SA; and because many of these parents are virally suppressed and would otherwise fulfil our eligibility criteria as living donors. This paper discusses the evolution of HIV and transplantation in SA, highlights some of the primary ethical considerations for us when embarking on this case and considers the new ethical issues that have arisen since we undertook this transplant. (shrink)

The article explores the complex roles shame plays in the lives of people with one or more chronic conditions. This is achieved through a participatory research process in which people with chronic conditions were invited to share stories of shame on the public social media profiles of a peer-led patient community called ‘Chronic Influencers’. The crowdsourced material shows that 7 out of 10 experience shame in relation to their illness on a daily or weekly basis. Other findings are that shame (...) seems to stick to ‘energetic failures’ of the slow or tired body in various social situations; shame is predominantly produced or anticipated in the intimate sphere; and shame can be ‘rescripted’ as culturally produced and politically contestable – and thus counter the pressure to individualise health as a project of personal improvement and self-inspection – when it is shared through voluntary storytelling among peers on social media. (shrink)

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief. I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized. I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study. I then use this analysis to highlight some clinical challenges that arise should this claim receive uptake (...) in clinical practice. Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high. If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated. I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve. (shrink)

With an increasing number of individuals living with chronic illness and pain, integrative approaches offering self-management support are needed. This book proposes a multi-layered framework integrating the body/self/environment that cultivates wholeness as an authentic embodied presence in alignment with a reflexive self.

Books about the law can sometimes be dull and hard to follow. This one is not. It is easy to read; the writing style is accessible and the book is well organised and well structured. The author clo...

The prelims comprise: Introduction Chronic Illness and Disability Acute and Chronic Illness: Health Care's Goals The Population Adaptive Values Personal and Public Perspectives Worthy Lives Conclusion Notes.

In this paper I focus on the topic of chronic illness in the context of quality of life. I offer a conceptual explanation of these notions and then try to systematise the various species of suffering connected with chronic illness. Suffering in illness rarely attracts systematic analysis. Part of the reason for this is that the topic is in a way an aspect of common sense. It has an air of self-evidence and seems not to require analysis. However, it is (...) my contention that the nature of human suffering is not at all selfevident. In many ways we know very little about the content and extent of suffering. And, although it may not be sensible to borrow traditional scientific techniques for the study of suffering, we need as much intellectual penetration and rigorous analysis in order to clarify the nature of suffering as for any other scientific investigation. Moreover, there are good reasons for saying that we ought to direct much more of our attention to this humanistic aspect of medicine. We ought to remember that the existence of suffering is one of the main motives, if indeed not the most important motive, for undertaking the medical enterprise. (shrink)

According to Information-Motivation-Behavioural Skills model, accurate Information, strong Motivation and adequate Behavioural skills are prerequisites of treatment adherence. This model has been verified among chronically ills patients, usually suffering from one particular disorder. No studies report how the model fits data from a more diverse group. The aim of the study was to analyze adherence and its barriers in a group of three hundred patients suffering from various, common chronic disorders. They filled out IMB and Adherence Questionnaire. Information and (...) Motivation correlated moderately. Behavioural Skills was the strongest predictor of adherence. An additional relationship was found: Information and Motivation interacted and the role of either of these dimensions vanished if the indices of the other were high enough. The relationships between IMB dimensions and adherence were confirmed in a varied clinical sample. Behavioural skills must be considered when working with non-adherent patients, as they are the strongest predictor of adherence. Other interventions may be limited to either Information or Motivation only if there is a chance of raising one of them to extreme levels. This may be useful with special cases, when increasing both is problematic. (shrink)

This paper explores the potential and relevance of an innovative sociological research method known as the Imitation Game for research in health care. Whilst this method and its potential have until recently only been explored within sociology, there are many interesting and promising facets that may render this approach fruitful within the health care field, most notably to questions about the experiential knowledge or ‘expertise’ of chronically ill patients. The Imitation Game can be especially useful because it provides a (...) way to map this experiential knowledge more systematically, without falling in the dual trap of either over-relying on in-depth, but highly specific phenomenological ‘insider’-approaches that are hard to generalize, or, alternatively, problematically reducing the rich life-worlds of patients to a set of indicators in a questionnaire. The main focus of this paper is theoretical and conceptual: explaining the Imitation Game method, discussing its usefulness in the health care domain, and exploring the ways in which the approach can be utilized for chronic illness care. The paper presents both a conceptual and empirical exploration of how the Imitation Game method and its underlying theoretical concepts of ‘contributory expertise’ and ‘interactional expertise’ can be transferred from the sociological realm to the field of health care, what kinds of insights can be gained from the method, which methodological issues it may raise, and what potentially fruitful research routes can be explored. I argue that the Imitation Game can be thought of as a ‘social learning experiment’ that simultaneously enables the participants to learn from each other’s perspectives, allows researchers to explore exciting new possibilities, and also offers the tools to intervene in the practice that is being studied. (shrink)