The Role of a Hospital Ethics Consultation Service in Decision-Making for Unrepresented Patients

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment (LST) for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics committee consultations, twenty-five (8.1 per cent) of which involved unrepresented patients. In thirteen (52.0 per cent) cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST (72 per cent) or to change code status to Do Not Resuscitate/Do Not Intubate (12 per cent). Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision (50 per cent vs 6.3 per cent, p = 0.04). In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers.     

The use of Ethics Decision‐Making Frameworks by Canadian Ethics Consultants: A Qualitative Study

In this study, Canadian healthcare ethics consultants describe their use of ethics decision‐making frameworks. Our research finds that ethics consultants in Canada use multi‐purpose ethics decision‐making frameworks, as well as targeted frameworks that focus on reaching an ethical resolution to a particular healthcare issue, such as adverse event reporting, or difficult triage scenarios. Several interviewees mention the influence that the accreditation process in Canadian healthcare organizations has on the adoption and use of such frameworks. Some of the ethics consultants we interviewed also report on their reluctance to use these tools. Limited empirical work has been done previously on the use of ethics decision‐making frameworks. This study begins to fill this gap in our understanding of the work of healthcare ethics consultants.     

Weight History in Clinical Practice: The State of the Science and Future Directions

Eliciting a weight history can provide clinically important information to aid in treatment decision‐making. This view is consistent with the life course perspective of obesity and the aim of patient‐centered care, one of six domains of health care quality. However, thus far, the value and practicality of including a weight history in the clinical assessment and treatment of patients with obesity have not been systematically explored. For these reasons, the Clinical Committee of The Obesity Society established a task force to review and assess the available evidence to address five key questions. It is concluded that weight history is an essential component of the medical history for patients presenting with overweight or obesity, and there are strong and emerging data that demonstrate the importance of life stage, duration of exposure to obesity, maximum BMI, and group‐based trajectory modeling in predicting risk for increased morbidity and mortality. Consideration of these and other patient‐specific factors may improve risk stratification and clinical decision‐making for screening, counseling, and management. Recommendations are provided for the key elements that should be included in a weight history, and several needs for future clinical research are outlined.     

[Re]considering Respect for Persons in a Globalizing World

Contemporary clinical ethics was founded on principlism, and the four principles: respect for autonomy, nonmaleficence, beneficence and justice, remain dominant in medical ethics discourse and practice. These principles are held to be expansive enough to provide the basis for the ethical practice of medicine across cultures. Although principlism remains subject to critique and revision, the four‐principle model continues to be taught and applied across the world. As the practice of medicine globalizes, it remains critical to examine the extent to which both the four‐principle framework, and individual principles among the four, suffice patients and practitioners in different social and cultural contexts. Using the four‐principle model we analyze two accounts of surrogate decision making – one from the developed and one from the developing world – in which the clinician undertakes medical decision‐making with apparently little input from the patient and/or family. The purpose of this analysis is to highlight challenges in assessing ethical behaviour according to the principlist model. We next describe cultural expectations and mores that inform both patient and clinician behaviors in these scenarios in order to argue that the principle of respect for persons informed by culture‐specific ideas of personhood may offer an improved ethical construct for analyzing and guiding medical practice in a globalized and plural world.     

Cultural considerations in forgoing enteral feeding: A comparison between the Hong Kong Chinese,North American,and Malaysian Islamic patients with advanced dementia at the end‐of‐life

Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient‐centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision‐making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end‐of‐life care.     

The pathology clinic – pathologists should see patients

S. Manek The pathology clinic – pathologists should see patients This invited review describes why and how a pathologist should talk to patients in order to enhance the patient care pathway. The pathologist–patient interaction should become a natural extension to multidisciplinary team decision making, and also become the forum in which patients are helped to understand important aspects of their conditions and the pathological basis for their treatment plans. There is a vast amount of information available through the internet and to digest this can be a difficult process for a patient who is already having to cope with a medical condition. The pathologist is often best placed to sieve through this information and offer the patient the relevant detail necessary to understand the condition and the management pathway. Pathologists can provide up‐to‐date, simple information about malignant and even certain significant benign conditions, and they can do this with the help of several pictorial tools. In this way, the pathologist becomes an even more active member of a clinical team and helps both clinicians and patients to deal with illnesses in a novel way hitherto not considered.     

Treatment engagement of individuals experiencing mental illness: review and update

Individuals living with serious mental illness are often difficult to engage in ongoing treatment, with high dropout rates. Poor engagement may lead to worse clinical outcomes, with symptom relapse and rehospitalization. Numerous variables may affect level of treatment engagement, including therapeutic alliance, accessibility of care, and a client's trust that the treatment will address his/her own unique goals. As such, we have found that the concept of recovery‐oriented care, which prioritizes autonomy, empowerment and respect for the person receiving services, is a helpful framework in which to view tools and techniques to enhance treatment engagement. Specifically, person‐centered care, including shared decision making, is a treatment approach that focuses on an individual's unique goals and life circumstances. Use of person‐centered care in mental health treatment models has promising outcomes for engagement. Particular populations of people have historically been difficult to engage, such as young adults experiencing a first episode of psychosis, individuals with coexisting psychotic and substance use disorders, and those who are homeless. We review these populations and outline how various evidence‐based, recovery‐oriented treatment techniques have been shown to enhance engagement. Our review then turns to emerging treatment strategies that may improve engagement. We focus on use of electronics and Internet, involvement of peer providers in mental health treatment, and incorporation of the Cultural Formulation Interview to provide culturally competent, person‐centered care. Treatment engagement is complex and multifaceted, but optimizing recovery‐oriented skills and attitudes is essential in delivery of services to those with serious mental illness.     

Ethics consultation as moral engagement

I will begin by presenting some doubts about what might be called the "received view" of the role of the moral expert as a health care consultant. Then I will review the literature on moral experts and moral expertise and proceed to apply the results of that review to the notion that there are some who are expert in ethical decision making in health care. I will try to show that certain conclusions that can be drawn from this rather circumscribed topic have implications for the very conception of the relationship between moral theory and clinical ethics.     

Ethical Implications of Case‐Based Payment in China: A Systematic Analysis

How health care providers are paid affects how medicine is practiced. It is thus important to assess provider payment models not only from the economic perspective but also from the ethical perspective. China recently started to reform the provider payment model in the health care system from fee‐for‐service to case‐based payment. This paper aims to examine this transition from an ethical perspective. We collected empirical studies on the impact of case‐based payment in the Chinese health care system and applied a systematic ethical matrix that integrates clinical ethics and public health ethics to analyze the empirical findings. We identified eleven prominent ethical issues related to case‐based payment. Some ethical problems of case‐based payment in China are comparable to ethical problems of managed care and diagnosis related groups in high‐income countries. However, in this paper we discuss in greater detail four specific ethical issues in the Chinese context: professionalism, the patient‐physician relationship, access to care and patient autonomy. Based on the analysis, we cautiously infer that case‐based payment is currently more ethically acceptable than fee‐for‐service in the context of China, mainly because it seems to lower financial barriers to access care. Nonetheless, it will be difficult to justify the implementation of case‐based payment if no additional measures are taken to monitor and minimize its existing negative ethical implications.     

Islamic medical ethics: a primer

Modern medical practice is becoming increasingly pluralistic and diverse. Hence, cultural competency and awareness are given more focus in physician training seminars and within medical school curricula. A renewed interest in describing the varied ethical constructs of specific populations has taken place within medical literature. This paper aims to provide an overview of Islamic Medical Ethics. Beginning with a definition of Islamic Medical Ethics, the reader will be introduced to the scope of Islamic Medical Ethics literature, from that aimed at developing moral character to writings grounded in Islamic law. In the latter form, there is an attempt to derive an Islamic perspective on bioethical issues such as abortion, gender relations within the patient-doctor relationship, end-of-life care and euthanasia. It is hoped that the insights gained will aid both clinicians and ethicists to better understand the Islamic paradigm of medical ethics and thereby positively affect patient care.     

THE FUTURE OF BIOETHICS: THREE DOGMAS AND A CUP OF HEMLOCK

In this paper I argue that bioethics is in crisis and that it will not have a future unless it begins to embrace a more Socratic approach to its leading assumptions. The absence of a critical and sceptical spirit has resulted in little more than a dominant ideology. I focus on three key issues. First, that too often bioethics collapses into medical ethics. Second, that medical ethics itself is beset by a lack of self‐reflection that I characterize here as a commitment to three dogmas. Third, I offer a more positive perspective by suggesting how bioethics may benefit from looking towards public health ethics as a new source of inspiration and direction.     

WHEN CONCRETIZED EMOTION‐BELIEF COMPLEXES DERAIL DECISION‐MAKING CAPACITY

There is an important gap in philosophical, clinical and bioethical conceptions of decision‐making capacity. These fields recognize that when traumatic life circumstances occur, people not only feel afraid and demoralized, but may develop catastrophic thinking and other beliefs that can lead to poor judgment. Yet there has been no articulation of the ways in which such beliefs may actually derail decision‐making capacity. In particular, certain emotionally grounded beliefs are systematically unresponsive to evidence, and this can block the ability to deliberate about alternatives. People who meet medico‐legal criteria for decision‐making capacity can react to health and personal crises with such capacity‐derailing reactions. One aspect of this is that a person who is otherwise cognitively intact may be unable to appreciate her own future quality of life while in this complex state of mind. This raises troubling ethical challenges. We cannot rely on the current standard assessment of cognition to determine decisional rights in medical and other settings. We need to understand better how emotionally grounded beliefs interfere with decision‐making capacity, in order to identify when caregivers have an obligation to intervene.     

The pathology clinic - pathologists should see patients

This invited review describes why and how a pathologist should talk to patients in order to enhance the patient care pathway. The pathologist-patient interaction should become a natural extension to multidisciplinary team decision making, and also become the forum in which patients are helped to understand important aspects of their conditions and the pathological basis for their treatment plans. There is a vast amount of information available through the internet and to digest this can be a difficult process for a patient who is already having to cope with a medical condition. The pathologist is often best placed to sieve through this information and offer the patient the relevant detail necessary to understand the condition and the management pathway. Pathologists can provide up-to-date, simple information about malignant and even certain significant benign conditions, and they can do this with the help of several pictorial tools. In this way, the pathologist becomes an even more active member of a clinical team and helps both clinicians and patients to deal with illnesses in a novel way hitherto not considered.     

Ethical Considerations in Clinical Trials: A Critique of the ICH‐GCP Guideline

This article examines issues relating to ethics decision‐making in clinical trials. The overriding concern is to ensure that the well being and the interests of human subjects are adequately safeguarded. In this respect, this article will embark on a critical analysis of the ICH‐GCP Guideline. The purpose of such an undertaking is to highlight areas of concern and the shortcomings of the existing ICH‐GCP Guideline. Particular emphasis is made on how ethics committees perform their duties and responsibilities in line with the principles outlined in the ICH‐GCP Guideline. This article will draw attention to the need for a new approach to addressing the weaknesses of the ICH‐GCP Guideline in its present form.     

The impact of a new geriatric program in a hospital for the chronically ill.

Reports of the rapidly increasing proportion of persons aged 65 years and more in Canada and the resultant need for changes in the country''s health care system prompted experimental changes in the operation and training procedures at St. Mary''s of the Lake Hospital, Kingston, Ont. Aimed at better patient care and at better education of medical house staff in geriatrics and long-term care, the revised program is permeated with the philosophy of rehabilitation. It includes full-time staff, a geriatric outpatient clinic, a day hospital, a team approach to patient care (with regular team audits), problem-oriented medical records, a formal physical medicine section with a district inpatient unit, and an intensive inservice education program. After the first year of the program patient outcome had improved and more efficient use was being made of continuing care beds because of larger numbers of patinets being discharged home after shorter stays. This may be one avenue for deceleration of our country''s dismal rate of institutionalization.     

Investigating assumptions of vulnerability: A case study of the exclusion of psychiatric inpatients as participants in genetic research in low‐ and middle‐income contexts

Psychiatric genetic research investigates the genetic basis of psychiatric disorders with the aim of more effectively understanding, treating, or, ultimately, preventing such disorders. Given the challenges of recruiting research participants into such studies, the potential for long‐term benefits of such research, and seemingly minimal risk, a strong claim could be made that all non‐acute psychiatric inpatients, including forensic and involuntary patients, should be included in such research, provided they have capacity to consent. There are tensions, however, regarding the ethics of recruiting psychiatric inpatients into such studies. In this paper our intention is to elucidate the source of these tensions from the perspective of research ethics committee interests and decision‐making. We begin by defining inpatient status and outline some of the assumptions surrounding the structures of inpatient care. We then introduce contemporary conceptions of vulnerability, including Florencia Luna’s account of vulnerability which we use as a framework for our analysis. While psychiatric inpatients could be subject to consent‐related vulnerabilities, we suggest that a particular kind of exploitation‐related vulnerability comes to the fore in the context of our case study. Moreover, a subset of these ethical concerns takes on particular weight in the context of genetic research in low‐ and middle‐income countries. At the same time, the automatic exclusion of inpatients from research elicits justice‐related vulnerabilities.     

A flavour of Alzheimer's

This article describes how today in the United States neurologists diagnose forms of dementia, such as Alzheimer's disease and frontotemporal dementia. Taking as a starting‐point the pervasive context of uncertainty in the diagnosis of neurodegenerative diseases, it examines how uncertainty is not merely an epistemological obstacle to the making of knowledge. On the contrary, the article analyses how uncertainty positively incites the use of clinicians’ ‘feelings’ in diagnostic work. Drawing on observations of clinical consultations and team meetings, it studies how, alongside contemporary instruments of objectification, clinicians use, share, and discuss their ‘feelings’ to ultimately renew knowledge about brain diseases. In documenting the manner in which medical expertise is bound to a concrete experience of the world, this article further explores how experts’ ‘intuition’ can be grasped as a conscious and effortful process, rather than as something ineffable, resisting analysis, and confined to an unconscious background.     

THE DEATH OF BIOETHICS (AS WE ONCE KNEW IT)

Fast forward 50 years into the future. A look back at what occurred in the field of bioethics since 2010 reveals that a conference in 2050 commemorated the death of bioethics. In a steady progression over the years, the field became increasingly fragmented and bureaucratized. Disagreement and dissension were rife, and this once flourishing, multidisciplinary field began to splinter in multiple ways. Prominent journals folded, one by one, and were replaced with specialized publications dealing with genethics, reproethics, nanoethics, and necroethics. Mainstream bioethics organizations also collapsed, giving way to new associations along disciplinary and sub‐disciplinary lines. Physicians established their own journals, and specialty groups broke away from more general associations of medical ethics. Lawyers also split into three separate factions, and philosophers rejected all but the most rigorous, analytic articles into their newly established journal. Matters finally came to a head with global warming, the world‐wide spread of malaria and dengue, and the cost of medical treatments out of reach for almost everyone. The result was the need to develop plans for strict rationing of medical care. At the same time, recognition emerged of the importance of the right to health and the need for global justice in health. By 2060, a spark of hope was ignited, opening the door to the resuscitation of bioethics and involvement of the global community.     

Deceased‐directed donation: Considering the ethical permissibility in a multicultural setting

This paper explores the ethics of deceased‐directed donation (DDD) and brings a unique perspective to this issue—the relevance of providing family‐centered care and culturally sensitive care to deceased donors, potential recipients, and their families. The significance of providing family‐centered care is becoming increasingly prevalent, specifically in pediatric healthcare settings. Therefore, this topic is especially relevant to those working with and interested in pediatrics. As the world is becoming more diverse with globalization, assessing the cultural aspect of the ethics of DDD is increasingly salient. We provide a brief overview of DDD across the globe, review prominent arguments both for and against DDD, consider family‐centered and culturally specific considerations, and offer considerations for the development of a policy or guideline. We determine that the practice of DDD is ethically defensible in certain circumstances and congruent with providing both family‐centered and culturally sensitive care. Our analysis is relevant to any country with a diverse population and any healthcare provider or institution that operates under a framework of family‐centered care, such as those in pediatric hospitals.     

LIFE-CENTERED ETHICS, AND THE HUMAN FUTURE IN SPACE

In the future, human destiny may depend on our ethics. In particular, biotechnology and expansion in space can transform life, raising profound questions. Guidance may be found in Life‐centered ethics, as biotic ethics that value the basic patterns of organic gene/protein life, and as panbiotic ethics that always seek to expand life. These life‐centered principles can be based on scientific insights into the unique place of life in nature, and the biological unity of all life. Belonging to life then implies a human purpose: to safeguard and propagate life. Expansion in space will advance this purpose but will also raise basic questions. Should we expand all life or only intelligent life? Should we aim to create populations of trillions? Should we seed other solar systems? How far can we change but still preserve the human species, and life itself? The future of all life may be in our hands, and it can depend on our guiding ethics whether life will fulfil its full potentials. Given such profound powers, life‐centered ethics can best secure future generations. Our descendants may then understand nature more deeply, and seek to extend life indefinitely. In that future, our human existence can find a cosmic purpose.