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)

Chronic childhood disease brings psychological challenges for families and carers as well as the children. Roger Bradford explores how they cope with these challenges, the psychological and social factors that influence outcomes and the ways in which the delivery of services can be improved to promote adjustment. Drawing on concepts from health psychology and family therapy, the author proposes a multi-level model of care which takes into account the child, the family and the wider care system (...) and how they interrelate and influence each other. (shrink)

In an earlier edition of CambridgeQuarterly, in the section (CQ Vol 9, No 4), Larry Gottlieb sought advice on ethics committee assembly and policy implementation for a community mental health center. One concern mentioned is that staff members frequently encounter ethical issuesregarding the care of clients whose decisionmaking abilities are impaired by chronic mental illness and/or substance abuse. My response offers a suggestion for policy development and implementation, which may be integrated into guiding staff members of community mental (...) health centers toward a model of care planning that is centered on clients' experiences of their treatments and on relationship-building among clients, community members, and mental health professionals. (shrink)

Twenty years ago, the biopsychosocial model was proposed by George Engel to be the new paradigm for medicine and psychiatry. The model assumed a hierarchical structure of the biological, psychological and social system and simple interactions between the participating systems. This article holds the thesis that the original biopsychosocial model cannot depict psychiatry's reality and problems. The clinical validity of the biopsychosocial model has to be questioned. It is argued that psychiatric interventions can only stimulate but (...) not determine their target systems, because intervention and outcome are only loosely coupled. Thus, psychiatric interventions have in principle limited ranges which differ according to the type of intervention and according to the system to be stimulated. Psychosocial interventions face far more obstacles to be overcome than psychopharmacogical therapy. (shrink)

The central hyperexcitability observed in animal models supports a pathophysiological explanation for chronic human pain. Novel information on cholecystokinin (CCK) upregulation offers a rationale for reduced opioid response in neuropathic pain. However, the basic information provided by scientists should not lead clinicians to equate experimental models to chronic human conditions. Clinicians should provide careful reports and attempt to classify pathophysiologically clinical conditions that have so far been grouped generically. [blumberg et al.; coderre & katz; dickenson; wiesenfeld-hallin et al.].

Living things are often plastic during their early development and are moulded by the environment. Many human fetuses have to adapt to a limited supply of nutrients, and in doing so they permanently change their physiology and metabolism. These programmed changes may be the origins of a number of diseases in later life, including coronary heart disease, stroke, diabetes and hypertension.

While the biomedical model is still theleading paradigm within modern medicine and healthcare, and people with generalised chronicmusculoskeletal pain are frequent users of health careservices, their diagnoses are rated as having thelowest prestige among health care personnel. Anepistemological framework for understanding relationsbetween body, emotions, mind and meaning is presented.An approach based on a phenomenological epistemologyis discussed as a supplement to actions based on thebiomedical model.Within the phenomenological frame of understanding,the body is viewed as a subject and carrier (...) ofmeaning, and therefore chronic pain can be interpretedas a rational reaction to the totality of a person'slife situation. Search for possible hidden individualmeanings in painful muscles presupposes meeting healthpersonnel who view the person within a holistic frameof reference. (shrink)

BackgroundPatients with chronic heart failure and their family caregivers may experience adverse emotional problems, such as depression. Mutuality, which refers to the relationship between caregivers and those they care for, is an important factor affecting depression in the dyads. The purpose of this study was to investigate the relationship between mutuality and depression in patients with CHF and their caregivers in China.MethodsIn this cross-sectional study, we used the Mutuality Scale and the Self-Rating Depression Scale to measure mutuality and (...) depression of patients and caregivers. We used SPSS version 26.0 and AMOS version 21.0 to analyze the data. An APIM was established to analyze the actor-partner effects of patient-caregiver mutuality and depression.ResultsA total of 250 dyads of patients and caregivers were included in the study. There were statistically significant differences in mutuality and depression between CHF patients and caregivers. The 4 dimensions of patients’ mutuality all have the actor effect on depression. There were 3 partner effects of caregivers’ “pleasurable activities”, “shared values”, and “reciprocity” on depression. Regarding caregiver depression, we only found an actor effect of caregivers’ “shared values” on depression.ConclusionThe relationship between patients and caregivers should be evaluated in the clinical setting, and it is very important to develop intervention measures to improve the adverse emotional problems affecting both patients and their caregivers. (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 emergency department (ED) is a fast-paced, highly stressful environment where clinicians function with little or suboptimal information and where time is measured in minutes and hours. In addition, death and dying are phenomena that are often experienced in the ED. Current end-of-life care models, based on chronic illness trajectories, may be difficult to apply in the ED. A philosophical approach examining end-of-life care may help us understand how core medical and nursing values are embodied as (...) class='Hi'>care practices and as ethical comportment. The integration of Aristotle's notions of phronesis and praxis with Merleau-Ponty's ontological notions of intentional arc and maximum grip in the context of the culture and practices of the ED offers a unique view of clinical and ethical practice at the end-of-life in the emergency setting. Caring for people at the end-of-life calls us to act virtuously based on previous experience, meanings and local practices. The maximum grip of the ultimate particulars of the situation combined with one's experiential and theoretical knowledge opens up situated possibilities for the expert clinician. (shrink)

A growing epidemic of chronic illness in working populations contributes to a negative spiral of work and organizational outcomes including increased absenteeism, prolonged disability or illness claims, early work termination, and non-voluntary unemployment. Chronic illness, characterized by fluctuating trends in clinical and embodied experience along a prolonged time course, is intersubjectively experienced within a social context, and variably responded to and managed within and between organizations and countries. Drawing from global health, we discuss chronic illness experience and (...) organizations as context for chronic illness experience. We then propose a model of ‘organizational caregiving,’ highlighting how invested relational understanding, attitude, intent, and acts of care can enrich the work and organizational experiences of employees with chronic illness. (shrink)

Chronic pain patients often miss receiving acknowledgement for the multidimensional struggles they face with their specific conditions. People suffering from chronic pain experience a type ofinvisibilitythat is also borne by other chronically ill people and their respective medical conditions. However, chronic pain patients face both passive and active exclusion from social participation in activities like family interactions or workplace inclusion. Although such aspects are discussed in the debates lead by the bio-psycho-social model of pain, there seems (...) to be a lack of a distinct interest in assessing more specifically the social aspects regarding chronic pain. As a result, the social aspects have yet to be taken into a more thorough theoretical consideration of chronic pain and to be practically implemented to help affected patients. By addressing chronic pain patients’ struggle for recognition, this paper attempts to shed light on some of these social aspects. We base this attempt on a theoretical framework that combines patients’ statements with an adaptation of Axel Honneth’s social-philosophical work onrecognition. Thus, this paper tries to make a suggestion on how the bio-psycho-social model of pain can live up to its name by helping to address more adequately some of the more neglected aspects in chronic pain patients’ suffering than has been possible to date. (shrink)

Chronic obstructive pulmonary disease (COPD) is one of the most deadly and costly chronic diseases in the world characterized by many breathing problems. The management of COPD and the prevention of exacerbations are a priority goals to improve the quality of life in patients affected by this illness. In addition, it is also crucial to improve the patients’ adherence to care which, in turn, depends on their knowledge and understanding of some factors such as the prescribed medical (...) treatment, changes in dailylife, and the process of breathing. In turn, the adherence to care leads to greater autonomy for the patient who is thus able to better manage his illness. Here we presented the application of the Model IARA in patients affected by COPD in order to achieve their autonomy in illness management which, in turn, leads to a better quality of life. IARA is an intervention program which improve the awareness and knowledge of patients with respect to both the disease and symptoms through health education. Moreover, through IARA the patients are encouraged to become more actively involved in COPD care process, also regarding drug therapy adherence. Using St. George's Respiratory Questionnaire combined with qualitative analysis, we demonstrated that IARA could be considered a useful approach in COPD management. (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)

This study is considered as a proposal to identify some metaphysical support of the self-care for a patient suffering from a chronic disease, as an extension of the bio-psycho-social paradigm. The methodology is dominated by a phenomenological perspective, supported by a hermeneutic conceptual analysis of the care of the self in Michel Foucault, focused on the Socratico-Platonic period and pervaded by the intention of having a translation and application to self-care. Foucault pleads for an aesthetics of (...) the self, called subjectivity, in which the subject is self-constituted through the so-called technologies of the self. The care of the self comes from the resignification of the philosophy as a way of life in which the subject is objectified. The translation and the applicability of the care of the self at the idea level to self-care are identified precisely in the acquisition of some important principles of the philosophy of care of the self from the Greek Antiquity: the role of awakener of consciousness of the one who is concerned about oneself as the first moment of the metaphor of awakening from the sleep, the ēthos as a way of being, a way of behaving and a life model. The pair self-knowledge – care of oneself justifies informing the former by the latter, in which being concerned about oneself means knowing oneself. Nevertheless, knowledge means care of the self where the self is synonymous with the soul and moreover, with the divine element in man. (shrink)

Over the past 25 years, several new “medicines” have come screeching onto health care’s various platforms, including narrative medicine, personalized medicine, precision medicine and person-centred medicine. Philosopher Miriam Solomon calls the first three of these movements different “ways of knowing” or “methods,” and argues that they are each a response to shortcomings of methods that came before them. They should also be understood as reactions to the current dominant model of medicine. In this article, I will describe our (...) dominant model, which I call “the new medical model.” I will argue that several towering problems in modern medicine can be traced to its philosophical foundations, which calls for philosophical analysis. (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)

Self‐management is often presented as a panacea for chronic disease care. It plays an important role at the policy level and increasingly guides the delivery of health care services. Self‐management approaches to care are founded on traditional individualistic views of autonomy in which the patient is understood as being independent, rational, self‐interested, and self‐governing. This conceptualization of autonomy has been challenged, particularly by feminist scholars. In this paper I review predominant critiques of self‐management and the traditional (...) individualistic view of autonomy. I propose that a relational approach to autonomy, which is premised on social embeddedness and attends to social, political, and material conditions, is a more sound conception of autonomy capable of taking into consideration the complexities of illness experiences. I suggest that integrating a relational perspective of autonomy into self‐management will be valuable in guiding its progression and elaborate ways in which self‐management research and practice could benefit from incorporating a relational approach to autonomy. (shrink)

A rising number of patients require continuing or palliative services and this means that they will need to transition from one model of healthcare delivery to another. If it is generally recognised that patient vulnerability to inadequate services increases when the setting in which patient receives care changes, it is usually taken to be the result of poor coordination of services or personnel. Recognising that an integrated system is essential to adequate access, the point that I put forward (...) in this paper is that the centrality of acute care services affects the way in which chronic and palliative services are structured and, consequently, their availability. I argue that the problem originates in the manner in which some of the foundational concepts of the acute care model are imported into the other models of care delivery. In order to make this case, I review the three main models of healthcare service delivery by focusing my analysis along three axes: the goal of the care model; the predominant understanding of autonomy implicit in the model; and, the main actors in the care relationship. By examining how the various concepts translate from one model to the next, I discuss what I identify to be one of the main conceptual obstacles to less problematic transitioning, the notion of autonomy and the corresponding view of the patient as an isolated agent. (shrink)

In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient–professional relationship is not a productive way to envision the patient–professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for (...) people with a chronic illness. This is illustrated with a case study. It concerns a study of the experiences of a Multiple Sclerosis (MS) patient and healthcare professionals involved in her care. The presented stories show that the participants did not act in line with the roles and responsibilities embodied in the consumerism rhetoric in Dutch healthcare policy. Expectations of patients and healthcare professionals are better met when care is redefined as mutual endeavour in which the caring abilities of healthcare professionals and the vulnerability of chronically ill patients are taken into account. (shrink)

Managed care is evolving in ways that pose unique ethical challenges to those interested in the intersection of clinical and organizational ethics. For example, Disease Management is a form of managed care that has emerged in response to chronic illness. DM is a healthcare management tool that coordinates resources across an entire health care delivery system and throughout the life cycle of chronic disease. Health Maintenance Organizations have reduced some costs in the delivery of acute (...) care, but real cost savings will result only with greater efficiencies in the delivery of costly chronic care. DM is a systematic, population-based approach that identifies persons at risk of chronic ailment, intervenes with specific programs of care, measures clinical and other outcomes, and provides continuous quality improvement. Characterized as a movement to patient-driven services, DM involves a complex web of provider relations. (shrink)

Osteopathy is a person-centred healthcare discipline that emphasizes the body’s structure-function interrelationship—and its self-regulatory mechanisms—to inform a whole-person approach to health and wellbeing. This paper aims to provide a theoretical framework for developing an integrative hypothesis in osteopathy, which is based on the enactivist and active inference accounts. We propose that osteopathic care can be reconceptualised under active inference as a unifying framework. Active inference suggests that action-perception cycles operate to minimize uncertainty and optimize an individual’s internal model (...) of the lived world and, crucially, the consequences of their behaviour. We argue that active inference offers an integrative framework for osteopathy, which can evince the mechanisms underlying dyadic and triadic exchanges and osteopathic care outcomes. We propose that this theoretical framework can underpin osteopathic care across the lifespan, from preterm infants to the elderly and those with persistent pain and other physical symptoms. In situations of chronicity, as an ecological niche, the patient-practitioner dyad provides the osteopath and the patient with a set of affordances, i.e., possibilities for action provided by the environment, that through shared intentionally, can promote adaptations and restoration of productive agency. Through a dyadic therapeutic relationship, as they engage with their ecological niche’s affordances—a structured set of affordances shared by agents—osteopath and patient actively construct a shared sense-making narrative and realise a shared generative model of their relation to the niche. In general, touch plays a critical role in developing a robust therapeutic alliance, mental state alignment, and biobehavioural synchrony between patient and practitioner. However, its role is particularly crucial in the fields of neonatology and paediatrics, where it becomes central in regulating allostasis and restoring homeostasis. We argue that from an active inference standpoint, the dyadic shared ecological niche underwrites a robust therapeutic alliance, which is crucial to the effectiveness of osteopathic care. Considerations and implications of this model—to clinical practice and research, both within- and outside osteopathy—are critically discussed. (shrink)

The global COVID‐19 pandemic challenged the world—how it functions, how people move in the social worlds and how government/government services and people interact. Health services, operating under the principles of new public management, have undertaken rapid changes to service delivery and models of care. What has become apparent is the mechanisms within which contemporary health services operate and how services are not prioritising the person at the centre of care. Person‐centred care (PCC) is the philosophical premise upon (...) which models of health care are developed and implemented. Given the strain that COVID‐19 has placed on the health services and the people who deliver the care, it is essential to explore the tensions that exist in this space. This article suggests that before the pandemic, PCC was largely rhetoric, and rendered invisible during the pandemic. The paper presents an investigation into the role of PCC in these challenging times, adopting a Foucauldian lens, specifically governmentality and biopolitics, to examine the policies, priorities and practical implications as health services pivoted and adapted to changing and acute demands. Specifically, this paper draws on the Australian experience, including shifting nursing workforce priorities and additional challenges resulting from public health directives such as lockdowns and limitations. The findings from this exploration open a space for discussion around the rhetoric of PCC, the status of nurses and that which has been lost to the pandemic. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further (...) implementation. A shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

In times of ongoing resource shortages, appropriate evaluation criteria are crucial for the ethical prioritization of medical care. While the use of scoring models as tools for prioritization is widespread, they are barely discussed in the medical-ethical discourse in the context of the COVID-19 pandemic. During this time, the challenge of providing care for patients in need has promoted consequentialist reasoning. In this light, we advocate for the integration of time- and context-sensitive scoring (TCsS) models in prioritization policies (...) that foster treatment opportunities for patients with subacute and chronic conditions. We argue, first, that TCsSs enable a more efficient use of resources, reducing avoidable harm to patients by preventing arbitrary postponement of necessary but nonurgent interventions. Second, we contend that on an interrelational level, TCsSs render decision-making pathways more transparent, which promotes the information requirement of patient autonomy and raises confidence in the resulting prioritization decision. Third, we claim that TCsS contributes to distributive justice by reallocating available resources to the benefit of elective patients. We conclude that TCsSs promote anticipatory measures that extend the timeframe for responsible action into the future. This strengthens patients' ability to exercise their right to healthcare—primarily during times of crisis, but ultimately in the longer term too. (shrink)

Health literacy is a contemporary term used in health services, often used to describe individuals requiring additional support to access, understand and implement health service information. It is used as a measure of self‐efficacy in chronic disease models of care such as the nurse navigator service. The aim of the research was to investigate the concept of health literacy in the nurse navigator service, particularly in relation to the defined role objective of person‐centred care. Fairclough's critical discourse (...) analysis was used to analyse the experiential, relational and expressive elements of texts, investigating the hidden truths which are represented in discourse. Texts from a variety of health service micro‐, meso‐ and macro‐hierarchical sources were selected for analysis using the nurse navigator evaluation data set and other associated texts. Health literacy in the nurse navigator service is a technology of government used to increase participation of individuals in their own health and well‐being. The discourse suggests that health literacy responsibilises both individuals and nurses and is discursively formed within a matrix of rational choice. In this context, health literacy contributes to structural vulnerability. (shrink)

Expiratory flow limitation (EFL) can occur in mechanically ventilated patients with chronic obstructive pulmonary disease and other disorders. It leads to dynamic hyperinflation with ensuing deleterious consequences. Detecting EFL is thus clinically relevant. Easily applicable methods however lack this detection being routinely made in intensive care. Using a simple mathematical model, we propose a new method to detect EFL that does not require any intervention or modification of the ongoing therapeutic. The model consists in a monoalveolar (...) representation of the respiratory system, including a collapsible airway that is submitted to periodic changes in pressure at the airway opening: EFL provokes a sharp expiratory increase in the resistance Rc of the collapsible airway. The model parameters were identified via the Levenberg-Marquardt method by fitting simulated data on the airway pressure and the flow signals recorded in 10 mechanically ventilated patients. A sensitivity study demonstrated that only 8/11 parameters needed to be identified, the remaining three being given reasonable physiological values. Flow-volume curves built at different levels of positive expiratory pressure, PEEP, during PEEP trials (stepwise increases in positive end-expiratory pressure to optimize ventilator settings) have shown evidence of EFL in three cases. This was concordant with parameter identification (high Rc during expiration for EFL patients). We conclude from these preliminary results that our model is a potential tool for the non-invasive detection of EFL in mechanically ventilated patients. (shrink)

This paper claims that palliative care is a suitable approach for offering comprehensive support to patients with life-threatening illness and unavoidable asthenia, to enhance their quality of life in aging and chronic illness. There are however some conceptual barriers to accessing that care on the Chinese Mainland: Death-denying culture and society; Misguidance and malpractice derived from the biomedical model; Prejudice against PC and certain deviant understandings of filial piety culture. To counter these obstacles, the study introduces (...) the philosophy of Chinese Taoist Chuang-tze to enlighten the public from ignorance and remove some illusions about death and dying; inspire people to face and accept illness and death calmly, and keep harmony and inner peace of mind to alleviate suffering, with the aim of providing wisdom and a shift of attitude toward life and death. Chuang-tze’s thoughts are consistent with the provision of palliative care, and to a certain degree, can promote its acceptability and delivery, and the conception of good death in practice. (shrink)

This book identifies and explores ethical themes in the structure and delivery of hospice care in the United States. As the fastest growing sector in the US healthcare system, in which over forty percent of patients who die each year receive care in their final weeks of life, hospice care presents complex ethical opportunities and challenges for patients, families, clinicians, and administrators. Thirteen original chapters, written by seventeen hospice experts, offer guidance and analysis that promotes best ethical (...) practice for hospice organizations and professionals. The book addresses common questions and issues faced by those who work in hospice care, a dynamic movement that, in only 30 years, has shifted from an all-volunteer care alternative at the end of life to a highly regulated industry in which over half of providers are for-profit enterprises in a very competitive health care marketplace. The chapters show how the history and philosophy of hospice care can inform the values and composition of care teams, the operations of inpatient units, and access to care for pediatric and long-term care populations. Various chapters propose frameworks for deliberating organizational approaches to ethical questions in changing regulatory and legal environments, including a model for hospice ethics committees. The final chapter outlines an expanded model of hospice as a community based, interdisciplinary, and holistic form of palliative care emphasizing advance planning, case management, and a flexible spectrum of services. This model can serve as a centrepiece for a new quality of life and social support approach, not only to terminal care, but also long-term care during the later stages of chronic illness and fraility. (shrink)

Background End-stage renal disease (ESRD) is the final stage of chronic kidney disease. Yet dialysis is not suitable for all ESRD patients. Moreover, while shared decision-making (SDM) is the preferred model for making medical decisions, little is known about SDM between nephrology nurses and ESRD patients in Israel. Research Objective Assessing the views, attitudes, practices, and ethical dilemmas of nephrology nurses in Israel regarding SDM with ESRD patients. Methods Using the descriptive quantitative approach, questionnaires were completed by 444 (...) nephrology nurses in Israel. In addition to conducting descriptive statistics, t-tests for independent samples, f-tests for analysis of variance, and both tests for independence were also performed. Ethical Considerations The research aims, expected advantages and risks have been explained to respondents before completing the questionnaire to secure informed consent. Anonymity and confidentiality were ensured throughout the study. The study was approved by the Research Ethics Committee at the University of Haifa (Approval # 411/21). Results About one-third (30%–36.5%) of nurses reported discussing quality of life issues with ESRD patients, asking about their advance directives/power of attorney, exploring cultural/religious beliefs in end-of-life care, and ask about their preferred place of death. Nurses who convey high levels of patient-centered care (68.9%, p<0.0001), have high end-of-life training (76.2%, p<0.0001), and report cooperating with interdisciplinary teams (63.8%, p = 0.0415), also reported higher SDM practices than others. Nurses who refer less patients to palliative care (70%, p<0.0001) reported higher involvement in SDM compared to other nurses. Conclusions Nephrology nurses in Israel do not tend to implement the SDM model, despite its potential for improving quality of life for ESRD patients and their families and increasing conservative care options. Policy makers and educators in Israel should develop and implement training programs and support in the workplace, to enhance SDM between nephrology nurses and ESRD patients. (shrink)

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

How can we provide the best care for the growing population of older adults, many of whom are either very frail or very sick? The traditional medical model of care is focused on treatment of single diseases. This can work well for pneumonia, cancer, or diabetes in younger patients. It does not, however, work as well for frail older adults who have accumulated multiple chronic conditions and disabilities. These elders often depend on family or paid caregivers (...) to provide assistance with taking medications, transportation, and other activities of daily living, such as dressing and bathing. A practitioner in the traditional medical model might prescribe medications that make sense in isolation but have harmful... (shrink)

This paper addresses the question of whether Medicaid is in fact a high-cost program after adjusting for the health of the people it covers. We compare and simulate annual per capita medical spending for lower-income people (families with incomes under 200% of poverty) covered for a full year by either Medicaid or private insurance. We first show that low-income privately insured enrollees and Medicaid enrollees have very different socioeconomic and health characteristics. We then present simulated comparisons based on multivariate statistical (...) models that estimate the effects of private and Medicaid coverage on the likelihood of using services, and the level of expenditures, given any use, holding constant demographic, economic, and health status characteristics. The simulations demonstrate that if people with Medicaid coverage—with their health status, disability, and chronic conditions—were given private coverage, they would cost considerably more than they do today. Conversely, if the privately insured were given Medicaid coverage, spending would be lower. We find no evidence that spending differences between Medicaid and private coverage for low-income people are due to lower service use by Medicaid beneficiaries. We conclude that most of the difference in expenditures is due to differences in provider payment rates. (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and mutually exclusive (...) regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

Despite advances in medical knowledge regarding pain management, pain continues to be significantly undertreated in the United States. There are many drug and nondrug treatments, but the use of controlled substances, particularly the opioid analgesics, is universally accepted for the treatment of pain from cancer. Although opioid analgesics are safe and effective in treating chronic pain, there is continued research and discussion about patient selection and long-term effects. A number of barriers in the health care and drug regulatory (...) systems account for the gap between what is known about pain management and what is practiced. Among the barriers are physicians’ fears of being disciplined by state regulatory boards for inappropriate prescribing.State medical boards are in a unique position not only to address physicians’ concerns about being investigated, but also to encourage pain management. Prior to 1989, a few state medical boards had policies relating to controlled substances or pain. Subsequently, state medical boards began adopting policies regarding the prescribing of opioids for the treatment of pain; many of these specifically addressed physicians’ fear of regulatory scrutiny. (shrink)

FEX A, FLENSNER G, EK A‐C and SÖDERHAMN O. Nursing Inquiry 2011; 18: 336–347 Living with an adult family member using advanced medical technology at homeAn increased number of chronically ill adults perform self‐care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self‐care at home, (...) either using long‐term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from healthcare professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent‐care. All next of kin were positive to the idea of bringing the technology home, even though their own needs receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent‐care and transition, which may have an influence on the self‐care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context. (shrink)