A recent article in this journal described practical and conceptual difficulties faced by public health researchers studying scabies outbreaks in British residential care facilities. Their study population was elderly, decisionally incapacitated residents, many of whom lacked a legally appropriate decision-maker for healthcare decisions. The researchers reported difficulties securing Research Ethics Committee approval. As practicing healthcare ethicists working in a large Canadian research hospital, we are familiar with this challenge and welcomed the authors’ invitation to join the discussion of (...) the ‘outstanding ambiguities and further questions’ that their experience uncovered. We propose a Power of Attorney for Research as one substantive solution to help address the problems they identified. Although we acknowledge the familiar shortcomings associated with Advance Directives in the clinical context, we believe that Powers of Attorney for Research Participation, accompanied by Advance Research Directives, may increase the likelihood of gaining deeper understandings of potential participant’s values and priorities and how they might apply to foreseeable research opportunities. (shrink)

Approximately 400,000 people die outside US hospitals or chronic care facilities each year. While there has been some recent movement towards initiating procedures for prehospital Do Not Resuscitate (DNR) orders, the most common situation in the US is that emergency medical systems (EMS) personnel are not authorized to pronounce patients dead, but are required to attempt resuscitation with all of the modalities at their disposal in virtually all patients. It is unfair and probably unrealistic for EMS personnel to have (...) to make a determination of the validity of a non-standard prehospital DNR order (for example, a living will or a durable power of attorney for health care). Existing prehospital DNR protocols range from being very restrictive in the scope of patients allowed to participate and in their implementation, to those that are more liberal. Potential benefits of prehospital DNR orders include freeing up vital personnel and material for use by those who would more fully benefit, and alleviating the enormous emotional strain on patients, families, EMS personnel, and hospital medical staffs involved in unwanted resuscitations that only prolong the dying process. Given this, prehospital DNR orders present several legal and moral problems. These include proper patient identification, the nature of the document itself, precautions incorporated into a DNR system to prevent misuse, potential liability for EMS and hospital personnel, and potential errors in implementation. Functioning prehospital DNR systems need to include: 1) specific legislation detailing the circumstances in which such a document could be used, the wording of such a document, and protection from liability for those implementing the document's directives; 2) having the currently valid document immediately available to the EMS personnel or base station doctors; and 3) acceptable means of identifying the patient. Relatively few US jurisdictions as yet have a prehospital DNR order system, although it is an idea whose time is overdue. Society's imperative to use available technology has pushed us into a situation where a technique to save those with a potential to continue a meaningful and wanted existence is being used indiscriminately to prolong the agony of death. (shrink)

In the literature three mechanisms are commonly distinguished to make decisions about the care of incompetent patients: A living will, a substituted judgment by a surrogate (who may or may not hold the power of attorney ), and a best interest judgment. Almost universally, the third mechanism is deemed the worst possible of the three, to be invoked only when the former two are unavailable. In this article, I argue in favor of best interest judgments. The evermore (...) common aversion of best interest judgments entails a risk that health care providers withdraw from the decision-making process, abandoning patients (or their family members) to these most difficult of decisions about life and death. My approach in this article is primarily negative, that is, I criticize the alleged superiority of the living will and substituted judgment. The latter two mechanisms gain their alleged superiority because they are supposedly morally neutral, whereas the best interest judgment entails a value judgment on behalf of the patient. I argue that on closer inspection living wills and substituted judgments are not morally neutral; indeed, they generally rely on best interest judgments, even if those are not made explicit. (shrink)

Caring for the competent, fragile, elderly patient at the end of life is becoming increasingly challenging. This case explores several ethical areas of concern that arise when caring for patients who have written durable powers of attorney for health care decisions and face life or death choices. Areas covered are informed consent with the elderly patient, the family's right to be involved in decision-making, futility of treatment, and the nurse's role as patient advocate during times of difficult (...) decision-making. Recommendations for increased nursing intervention during these times are incorporated. Les soins des personnes âgés, fragiles mais toujours compétentes et dont la vie touche à sa fin, posent des problèmes de plus en plus urgents. Cet article discute de plusieurs aspets qui se manifestent dans les soins des malades ayant écrit des mandats concernants leurs soins et qui doivent maintenant prendre des décisions graves concernant la vie ou la mort. Les aspets dont il s'agit dans cet article sont: le consentement informé des personnes âgés: le droit de la famille de participer à la décision; les traitements inutiles; et le rôle des infirmiers/ères pour plaider leur cause pendant des moments difficles de prises de décisions. Des recommendations pour de plus importantes interventions infirmières sont comprises. Die Pflege der geistig kompetenten aber hinfälligen Personen im hohen Alter stellt immer grössere Anforderungen. Dieser Artikel untersucht verschiedene ethische Aspekte, die bei der Pflege von Patienten, die eine schriftliche Vollmacht über medizinische Behandlung ausgestellt haben für ihre Pflege und jetzt Entscheidungen über Leben oder Tod treffen müssen. Der Artikel umfasst folgende Bereiche: informierten Zustimmung des Patienten, das Mitbestimmungsrecht der Familie, Zwecklosigkeit der Behandlung, und die Rolle des Pflegepersonals als Fürsprecher der Patienten bei schwierigen Entscheidungen. Empfehlungen für eine grössere Beteiligung oder Mitbestimmung des Pflegepersonals in diesen Fällen sind eingeschlossen. (shrink)

Bioethicists are widely agreed that patients have a right of self-determination over how they are treated. Our duty to respect this is said to be based on the principle of respect for autonomy. In end-of-life care the patient may be incompetent and unable to exercise that right. One solution is to exercise it in advance. Advance directives, which include living wills and powers of attorney for health care, enable people to decide what medical treatment they will (...) receive later, when they become incompetent. Advance directives have been criticized in two general ways. First, many critics contend that advance directives fail on a practical level to effect a patient's autonomous choices because, for example, people cannot foresee their futures well enough to make informed decisions in advance. Second, many critics contend that, practical problems aside, there is no moral authority for exercising control over one's incompetent future self. (shrink)

In recent years, the rights of patients have assumed a more pivotal role in international discussion. Stricter laws on the protection of patients place greater priority on the perspective and the status of patients. The purpose of this study is to emphasize ethical aspects in communication, the role of patient advocates as contacts for the concerns and suggestions of patients, and how many problems of ethics disappear when communication is highlighted. We reviewed 680 documented cases of consultation in a 10-year (...) period of patient advocates’ activity at a big German university hospital with 1,300 beds. On the basis of this extensive material, the article will focus on the intersection of the advocate’s work with the problems of patients in hospitals. Deficits in the level of communication between health care professionals and patients were frequently uncovered. Patients primarily complain about the lack of dialogue and empathy. Middle-aged patients consulted the patients’ advocate disproportionately more often. Measured against this baseline, the group of 65 and older complained less frequently. Besides complaints the advocate was asked in more than one-third of all cases for information about medical matters, hospital regulations or administrative problems. Patients obviously see the advocate as a well-connected and ideally unbiased contact person for uncertainties concerning their malady or a potential stay in hospital. Those seeking help often set hope in the information given by the voluntary patient representative. It should be highly recommended for every German hospital to establish the position of a patient advocate. Furthermore, patients can profit from regular exchange between the advocate and the Ethics Committee, also, to help ensure that their rights are taken into account and implemented in an ethically desirable context. (shrink)

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use (...) of advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments. (shrink)

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer’s disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal guardians or powers of (...) attorney, as well as discussions about these issues—and the need for them—with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish. (shrink)

This article examines the consequences of the politicization of health care in the United Kingdom following the creation of the National Health Service (NHS) in 1948. The NHS is founded on the principle of universal access to health care free at the point of use but in reality charges exist for some services and other services are rationed. Not to charge and/or ration would create a common-pool resource with no means of conserving scarce resources. Taking (...) rationing decisions in the political realm means that the values and priorities of individual patients are marginalized and the preferences of powerful organized groups able to capture the political process dominate. The key lesson for international health care reform is that the politicization of health care via the NHS has not led to the realization of egalitarian ends but rather has empowered vested and organized interests at the expense of individual patients. (shrink)

An increasing recognition over the past five decades of the importance of patients’ autonomy and the right to be able to choose to limit medical treatment at the end of life has led to the development of a number of documents related to advance care planning, including the advance directive, medical power of attorney, and portable orders for life-sustaining treatment (POLST). While these documents are important aspects of advance care planning, without having goals-ofcare conversations, a specific (...) plan, and necessary supports to achieve these goals, the documents alone offer a false promise. Healthcare professionals must be trained on how to have indepth goals-of-care conversations with patients and their families, and effectively document the decisions. Advance care planning needs to be viewed as a process that must continue as the patient’s health status, social support system, and living environment change. Designating a healthcare representative who participates in goals-of-care conversations and can work with the healthcare team to make “just in time” decisions about care reduces the burden and stress on friends and family. In this article we discuss the strengths and limitations of advance directives, medical power of attorney forms, and POLST forms; propose concrete changes to optimize the effectiveness of each; and present a comprehensive approach to advance care planning that we hope will improve care for those nearing the end of life, and ensure that their wishes and goals to have or to limit treatment are more consistently honored. (shrink)

State law requirements for health care advance directive documents were reviewed in every state and the District of Columbia to determine whether they are consistent and/or flexible enough to permit the utilization by the public of “universal” advance directive forms, specifically a health care power of attorney, that would be valid under every state's advance directive statutes. Such documents would have to overcome the wide variability of state legal formalities for validity. If this could (...) be accomplished, the public would benefit from having a variety of multi-state or truly universal forms available that could be used with confidence in their validity.The review found that a basic, multi-state health care power of attorney appears to be feasible in 41 States and the District of Columbia, compared to 36 states and the District in 2005. Only nine states prevent recognition of a truly universal form. Some barriers were surmountable, including differing agent and witness requirements, execution requirements, and effectiveness triggers. Other barriers were insurmountable, including mandatory forms, mandatory disclosures, and decision-specific language requirements. The strategies identified for overcoming some barriers can be used by lawyers in drafting true multi-state directives. More importantly, states should simplify state advance directive laws to facilitate a more meaningful communication model of advance care planning. (shrink)

German legislation demands that decisions about the treatment of mentally incompetent patients require an ‘informed consent’. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the (...) person under his/her care. This includes ‘end-of-life decisions’. Deviations from this procedure are only allowed in acute emergencies or cases of ‘medical futility’. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical ‘end of life-decisions’ and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like• the assessment of mental competence• the options for exercising patient self-determination via advance directives and durable powers of attorney• the improvement of palliative care facilities,• the clarification of formal procedures for surrogate decision-making in health care and towards the end of life• and the possibilities and their limitations of controlling these decision-making processes ‘externally’ (e.g., by Guardianship Courts or committees).The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of substitute decision making will be highlighted: (...) (1) Should there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

After reviewing some of the insurance-related obstacles to access to health care, some ethical criteria for evaluating proposals aimed at reforming the health insurance marketplace to achieve universal access are developed. The additional reforms needed to eliminate many of the deficiencies in the current health insurance marketplace are discussed. It is suggested that without such substantial reforms some of the other goals such as expanded consumer choice and overall societal health care cost savings may (...) not be effectively promoted. (shrink)

The care of patients with many illnesses often appears fragmented by many boundaries in the health care system when the care is provided in several locations of primary and secondary care. In the article, boundaries are examined in an interaction between patients and multiple providers in an effort to develop collaboration in inter-organizational provision in a Change Laboratory intervention. Firstly, it will be traced how the boundaries are expressed in the interaction. Secondly, it will be (...) studied how the boundaries expressed in the interaction relate to health care organizations and patient care practices. Thirdly, the practical activity that was embedded in the interaction between patients and providers will be focused on at the laboratory. The expression of boundaries was examined in activity theoretical terms as discursive actions. In discursive actions the ‘lived past’ becomes involved in the situational actions that orient towards future activity. The findings suggest that expressing boundaries uses various linguistic means and it seems relevant to propose that boundaries cannot be studied in a formal way; the analysis needs to be related to the organizational context of the specific study. However, the linguistic means may serve as useful “landmarks” or “pointers” of boundaries that are often expressed implicitly in the interaction. The laboratory session provides an opportunity to study boundaries “on the spot”, or “in their own right”. The realization of the emergent inter-organizational care at the session created challenges for the provision while contradicting some elements of the prevailing provision. During these kinds of interaction, the boundaries between providers became obvious. Furthermore, challenging the boundaries in the normal flow of interaction may be a potential for boundary crossing and even further, a re-constitution of boundaries. Consequently, a boundary crossing represents an interesting unit of analysis for future studies of boundaries and boundary crossing in interaction and discourse. At the laboratory setting was displayed the ability to control others through an indirect use of power that may reflect a simultaneous value system supported by the prevailing hierarchies. In the studies to come, it will be important to pay attention to these implicit power linkages when monitoring the boundaries in horizontal collaborations. (shrink)

Clark, Robert Victorian Attorney-General the Hon Robert Clark was guest speaker at the 2012 Annual General Meeting of the Caroline Chisholm Centre for Health Ethics. In this extract from his speech, he discusses the relationship between the law and ethics, and the reform of Victoria's laws on guardianship and powers of attorney. While some ethical obligations should not be made into legal duties, he argues that every legal duty is founded upon a moral obligation. The reform of (...) Victoria's laws on guardianship and powers of attorney seeks to make it easier for individuals and their families to provide for their current and future needs, while strengthening the last resort roles of the Office of the Public Advocate and the Victorian Civil and Administrative Tribunal to protect vulnerable people from neglect, abuse and exploitation. (shrink)

This book is a critical examination of certain basic issues and themes crucial to understanding how ethics currently interfaces with health care and biomedical research. Beginning with an overview of the field, it proceeds through a delineation of such key notions as trust and uncertainty, dialogue involving talk and listening, the vulnerability of the patient against the asymmetric power of the health professional, along with professional and individual responsibility. It emphasizes several themes fundamental to ethics and (...) health care: (1) the work of ethics requires strict focus on the specific situational understanding of each involved person. (2) Moral issues, at least those intrinsic to each clinical encounter, are presented solely within the contexts of their actual occurrence; therefore, ethics must not only be practical but empirical in its approach. (3) Each particular situation is in its own way imprecise and uncertain, and the different types and dimensions of imprecision and uncertainty are critical for everyone involved. (4) Finally, medicine and health care more broadly are governed by the effort to make sense of the healer's experiences with the patient, whose own experiences and interpretations are ingredient to what the healer seeks to understand and eventually treat. In addition to providing a way to develop ethical considerations in clinical life and research projects, the book proposes that narratives provide the finest way to state and grapple with these themes and issues, whether in classrooms or real-life situations. It concludes with a prospective analysis of newly emerging issues presented by and within the new genetics, which, together within a focus on the phenomenon of birth, leads to an clearer understanding of human life. (shrink)

End-of-life issues and questions are complex and frequently cause confusion and anxiety. In _Death with Dignity_,_ _theologian, medical ethicist, and pastoral caregiver Peter A. Clark examines numerous issues that are pertinent to patients, family members, and health care professionals, including physiology, consciousness, the definition of death, the distinction between extraordinary and ordinary means, medical futility, “Do Not Resuscitate” orders, living wills, power of attorney, pain assessment and pain management, palliative and hospice care, the role of (...) spirituality in end-of-life care, and physicians’ communication with terminal patients. Patients, family members, medical students, and health care professionals will find in _Death with Dignity _the_ _practical and ethical knowledge they need to capably and confidently cope with end-of-life challenges. (shrink)

Continuing medico-technical progress has led toan increasing medicalisation of pregnancy andchildbirth. One of the most common technologiesin this context is ultrasound. Based on someidentified `pro-technology feminist theories',notably the postmodernist feminist discourse,the technology of ultrasound is analysedfocusing mainly on social and political ratherthan clinical issues. As empirical researchsuggests, ultrasound is welcomed by themajority of women. The analysis, however, showsthat attitudes and decisions of women areinfluenced by broader social aspects. Furthermore, it demonstrates how the visualtechnology of ultrasound, in addition to otherreproductive technology (...) in maternity care, islinked to the `personification' of the foetusand has therefore contributed to a new image ofthe foetus. The exploration of these issueschallenges some arguments of feministdiscourse. It draws attention to possibleadverse implications of the technology forwomen's reproductive freedom and indicates theimportance of the topic for politicaldiscussions. (shrink)

It is critical to remember details about meetings with healthcare providers. Forgetting could result in inadequate knowledge about ones' health, non-adherence with treatments, and poorer health outcomes. Hearing the health care provider plays a crucial role in consolidating information for recall. The recent COVID-19 pandemic has meant a rapid transition to videoconference-based medicine, here described as telehealth. When using telehealth speech must be filtered and compressed, and research has shown that degraded speech is more challenging to (...) remember. Here we present preliminary results from a study that compared memory for health information provided in-person to telehealth. The data collection for this study was stopped due to the pandemic, but the preliminary results are interesting because the pandemic forced a rapid transition to telehealth. To examine a potential memory deficit for health information provided through telehealth, we presented older and younger adults with instructions on how to use two medical devices. One set of instructions was presented in-person, and the other through telehealth. Participants were asked to recall the instructions immediately after the session, and again after a 1-week delay. Overall, the number of details recalled was significantly lower when instructions were provided by telehealth, both immediately after the session and after a 1-week delay. It is likely that a mix of technological and communication strategies by the healthcare provider could reduce this telehealth memory deficit. Given the rapid transition to telehealth due to COVID-19, highlighting this deficit and providing potential solutions are timely and of utmost importance. (shrink)

BackgroundWith the enactment of Bill C-7 in Canada in March 2021, people who are eligible for medical assistance in dying (MAiD), whose death is reasonably foreseeable and are at risk of losing decision-making capacity, may enter into a written agreement with their healthcare provider to waive the final consent requirement at the time of provision. This study explored healthcare providers’ perspectives on honouring eligible patients’ request for MAiD in the absence of a contemporaneous consent following their loss of decision-making capacity. (...) MethodA critical qualitative methodology, using a feminist ethics theoretical lens with its focus on power and relationality, was used to examine how socio-political and environmental contexts influenced healthcare providers' moral agency and perspectives. Semi-structured interviews were conducted with 30 healthcare providers (13 physicians, six nurse practitioners, nine nurses and two social workers) from across Canada who provide MAiD-related care.ResultsThemes identified include; (1) balancing personal values and professional responsibilities, (2) anticipating strengths and limitations of the proposed waiver of final consent amendment, (3) experiencing ethical influences on decisions to enter into written agreements with eligible patients, (4) recognizing barriers to the enactment of MAiD in the absence of a contemporaneous consent and (5) navigating the potential for increased risks and burden.DiscussionTo our knowledge, this is the first study in Canada to explore healthcare providers’ perspectives on waiving the final consent for MAiD using a written agreement. Most participants supported expanding eligible people’s access to MAiD following loss of capacity, as they believed it would improve the patients’ comfort and minimize suffering. However, the lack of patients’ input at the time of provision and related ethical and legal challenges may impact healthcare providers’ moral agency and reduce some patients’ access to MAiD. Providers indicated they would enter into written agreements to waive final consent for MAiD on a case-by-case basis. This study highlights the importance of organizational, legal and professional support, adequate resources, clear policies and guidelines for the safety and wellbeing of healthcare providers and to ensure equitable access to MAiD. (shrink)

With increasing momentum for health care reform, attention is shifting to finance reform that will provide for direct methods for controlling health care spending. This article outlines the two principal paths to direct cost control and outlines a national plan that retains our multiple sources of payment, yet also contains a powerful direct cost control technique: a single fund to finance all health care.

Bester offers powerful arguments for why the harm principle cannot replace the best interest standard (BIS) as a guide for, and limit on, surrogate healthcare decision making (Bester 2018). Since B...

Empowerment and user participation represents an ideal of power with a strong position in the health sector. In this article we use text analysis to investigate notions of power in a program plan for health workers focusing on empowerment. Issues addressed include: How are relationships of power between users and helpers described in the program plan? Which notions of user participation are embedded in the plan? The analysis is based on Foucault’s idea that power (...) which is made subject to attempts of redistribution will re-emerge in other forms. How this happens, and with what consequences, is our analytical concern. The analysis is contrasted with ‘snapshots’ from everyday life in a nursing home. The program plan communicates empowerment as a democracy-building instrument that the users need. It is a tool for providing expert assistance to the user’s self-help. User participation is made into a tool which is external to the user him-/herself. Furthermore, the analysis shows that the plan’s image of empowerment presupposes an ‘élite user’ able to articulate personal needs and desires. This is not very applicable to the most vulnerable user groups, who thereby may end up in an even weaker position. By way of conclusion, we argue that an exchange of undesirable dominating paternalism for a desirable empowerment will not abolish power, but may result in more covert and subtle forms of power that are less open to criticism. The paper offers insights that will facilitate reflections on the premises for practising empowerment-oriented health care. (shrink)

The article focuses on the impact of the concept of self-care on persons who are understood as incapable of self-care due to their physical and/or mental ‘incapacity’. The article challenges the idea of this health care concept as empowerment and highlights the difficulties for persons who do not fit into this concept. To exemplify this, the self-care concept is discussed with regard to persons with Alzheimer’s disease (AD). In the case of persons with AD, self- (...) class='Hi'>care is interpreted in many different ways—depending on the point of view, for instance as an affected person or a carer. To prevent a marginalisation of the growing group of elderly persons with dementia, the article argues that concepts such as those of personhood, wellbeing, autonomy, rationality and normality have to be re-thought with regard to an increasingly ageing population. Taking into account that AD as a socio-medical construct has to be understood in the context of power relations, the article focuses on the mutual influence between the concepts of self-care and of AD and its possible impact on governing dementia and AD in particular. Michel Foucault’s considerations on ‘technologies of the self’ provide the basis for the discussion of the self-care concept within existing societal power relations. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managed Health Care: New Ethical Issues for All*Martina Darragh (bio) and Pat Milmoe McCarrick (bio)Changes in the way that health care is perceived, delivered, and financed have occurred rapidly in a relatively short time span. The 50-year period since World War II encompasses enormous growth in medical technology, soaring health care costs, and significant fragmentation of the two-party patient- physician relationship. This relationship (...) first grew to include the third-party payer, the health insurance industry, and now “with great speed and relatively little public awareness, a significant change has occurred in the way some decisions are made about a patient’s medical care” (III, Institute of Medicine 1989).The new means of providing health care bring an increasing number of parties into clinical decision-making processes. With this change, ethical issues that once concerned only health care professionals, the physician or the nurse, have expanded to include the patient and the groups who “manage” care—e.g., health maintenance organizations (HMOs), preferred provider organizations (PPOs), point of service groups (POSs), independent practice associations (IPAs), insurance reviewers, hospital administrators, institutional managers, and, the most recent players, purchasers of group health care who base their decisions on competitive pricing.The term “managed care” refers to a variety of continually adapting and developing arrangements that involve four groups. These groups, which have been labeled by the world of business, not health, are the “consumer” (once the patient), the “provider” (the physician and other health care professionals), the “insurer” (the reimburser for any care), and the “purchaser of care” or the primary buyer of health services (the large employer organization). Capitation is a common way to pay for health services in managed care systems. A certain dollar amount is negotiated for health services for a specified number of patients whether the care is delivered or not; the provider shares with the [End Page 189] insurer any financial risk for the actual cost of care (III, Centers for Disease Control 1995).When the Clinton administration’s health care reform movement failed to gain support in the U.S. Congress, the use of managed care to control rising health care costs accelerated. The literature on managed care and its effect on the patient-physician relationship reflects this shift. During the era of health care reform, “debate centered on how managed care could control costs, on the use of technology and patient satisfaction, [and] on access and barriers to care” (IV, Emanuel and Dubler 1995). When managed care organizations began contracting with physicians to provide health care services subject to the plans’ provisions, these plans became agents in clinical decision making on a wide-spread basis. HMO enrollment grew to 51 million persons by 1994 (III, Centers for Disease Control 1995). This “corporatization” of health care has sparked a plethora of articles about the effects of the marketplace on the physician’s ability to do what is best for the patient, and on the patient’s ability to trust the physician to do so.Many authors make it clear that managed care itself is not the problem, but rather the development of for-profit managed care plans by “corporate conglomerates with billions of dollars in assets that compensate their executives as grandly as basketball players” (V, Kassirer 1995) “in a marketplace that is largely unregulated” (I, Zoloth-Dorfman and Rubin 1995). “Some, mostly older plans that were created when cost containment was an unexpected benefit rather than their central purpose, deliver high-quality care economically. Unfortunately, others cut costs by recruiting the healthiest patients, excluding the sickest, rationing care by making it inconvenient to obtain, and denying care by a variety of mechanisms” (V, Kassirer 1995).These cost-containment features now play an intimate role in clinical practice. When a managed care plan contracts with a physician, the doctor becomes a “double agent” with contractual obligations to the plan to provide a preset amount of services and professional responsibilities to each patient to authorize necessary treatment (V, Angell 1993). This duality can undermine the physician’s fiduciary responsibility to the patient wherein the physician “has power over the affairs of [the patient]...and is required by law to act on that person’s... (shrink)

Current advances in connectivity, sensor technology, computing power and the development of complex algorithms for processing health-related data are paving the way for the delivery of innovative long-term health care services in the future. Such technological developments will, in particular, assist the elderly and infirm to live independently, at home, for much longer periods. The home is, in fact, becoming a locus for health care innovation that may in the future compete with the hospital. (...) However, along with these advances come valid privacy and security questions arising from the fact that the data collected and transmitted through these technologies could also allow for individual monitoring as well as unauthorized access to critical diagnostic and other health data. (shrink)

Health‐care and public sector institutions are high‐risk settings for workplace bullying. Despite growing acknowledgement of the scale and consequence of this pervasive problem, there has been little critical examination of the institutional power dynamics that enable bullying. In the aftermath of large‐scale failures in care standards in public sector healthcare institutions, which were characterised by managerial bullying, attention to the nexus between bullying, power and institutional failures is warranted. In this study, employing Foucault's framework of (...) power, we illuminate bullying as a feature of structures of power and knowledge in public sector institutions. Our analysis draws upon the experiences of a large sample (n = 3345) of workers in Australian public sector agencies – the type with which most nurses in the public setting will be familiar. In foregrounding these power dynamics, we provide further insight into how cultures that are antithetical to institutional missions can arise and seek to broaden the debate on the dynamics of care failures within public sector institutions. Understanding the practices of power in public sector institutions, particularly in the context of ongoing reform, has important implications for nursing. (shrink)

The next steps in health reform, like all such efforts before it, will have to engage the issue of American health care federalism – the relationship between the federal and state governments in the realm of health law and policy. Since its enactment in 2010, the Patient Protection and Affordable Care Act has offered a robust example of modern federalism and revealed new complexities. This article recounts the findings of our five-year study of the federalist (...) and nationalist features of ACA implementation. Contrary to the claims of ACA opponents that the law marked a federal “takeover,” the ACA's governance structures have advanced rather than suppressed state power. But we also found that the advances in state power occurred seemingly independently of the statute's structural arrangements; that is, the ACA's nationalist and federalist features both enhanced state power over health policy. These findings raise questions about whether cherished American federalism values are unique to federalist structures; they also raise the question of what exactly health care federalism is for, and why we continue to design health policy with federalism front and center. It is not clear that enhanced state power has brought better health policy. If it has not, is federalism for its own sake worth the trade-off? (shrink)

This article seeks to shed light on the beliefs that influence nurses’ intention of respecting or not respecting an advance directive document, namely a living will or a durable power of attorney. Nurses’ beliefs were measured using a 44-statement questionnaire. The sample was made up of 306 nurses working either in a long-term care centre or in a hospital centre offering general and specialized care in the province of Québec. The results indicate that nurses have a (...) strong intention of complying with advance directives written by patients. The analysis also shows that four variables determine the strength of this intention: respect for autonomy; the location of the workplace; justice; and the dimension of relationships and emotions. Although these documents favour the expression of patients’ wishes, nurses should be aware that they do not systematically guarantee respect of a patient’s autonomy, nor do they replace a relationship based on trust between patients and health care professionals. (shrink)

The factions debating health care reform in the United States have gravitated toward one of two positions: that just health care is an individual responsibility or that it must be regarded as a national concern. Both arguments overlook a third possibility: that justice in health care is multilayered and requires the participation of multiple and diverse communities. _Communities of Health Care Justice_ makes a powerful ethical argument for treating communities as critical moral (...) actors that play key roles in defining and upholding just health policy. Drawing together the key community dimensions of health care, and demonstrating their neglect in most prominent theories of health care justice, Charlene Galarneau postulates the ethical norms of community justice. In the process, she proposes that while the subnational communities of health care justice are defined by shared place, including those bound by culture, religion, gender, and race that together they define justice. As she constructs her innovative theorization of health care justice, Galarneau also reveals its firm grounding in the work of real-world health policy and community advocates. _Communities of Health Care Justice_ not only strives to imagine a new framework of just health care, but also to show how elements of this framework exist in current health policy, and to outline the systemic, conceptual, and structural changes required to put these justice norms into fuller practice. (shrink)

Mr. M is an eighty-five-year-old who presented to the hospital with congestive heart failure exacerbation, pneumonia, altered mental status, and sepsis. A physician determines that he lacks capacity, and the team in the intensive care unit looks to the patient's daughter, Celia, as his surrogate decision-maker because she is named as an agent in his medical power of attorney form. While in the ICU, Mr. M suffers acute respiratory distress secondary to pneumonia and thus requires intubation. Celia (...) accepts several life-sustaining interventions, but she sporadically refuses other medically indicated therapies. Although providers explain the importance of the ICU insulin regimen for glucose control, she either refuses the insulin or requests a lower dose. The health care team believes that it is providing substandard care and that Celia's medical decisions are not in the patient's best interests, so they request an ethics consultation. When the clinical ethicist attempts to talk with Celia, she refuses to speak with him, saying flatly, “I am not interested in talking with you.” The clinical ethicist meets with Celia on a couple of occasions, but she consistently refuses to have a conversation with him. He wonders if the patient's surrogate decision-maker can refuse a clinical ethics consultation and is unsure what his next steps should be. (shrink)

With the introduction of general management and then of planned markets into the National Health Service (NHS), health care in the UK has gone through a massive amount of change. The effect on those working for the NHS has been ‘challenging’ and often confusing. This paper aims to clarify what is happening by taking an ideological perspective: what ideologies exist, how they are changing and the strategies being used to ensure their survival. Ideologies are basically about (...) class='Hi'>power. The relationship between market, managerial and professional ideologies is analysed using charters, codes of conduct and other associated documents. A tentative conclusion is reached that professional ideologies are able to adjust to the overriding market/consumerist ideology. However, the managerial ideology is having difficulty in gaining any real ground against the professional ideology and is having to move strategically by using audit, not just of finance, but also of clinical judgement, to gain power. (shrink)

Advertising by health care institutions has increased steadily in recent years. While direct-to-consumer prescription drug advertising is subject to unique oversight by the Federal Drug Administration, advertisements for health care services are regulated by the Federal Trade Commission and treated no differently from advertisements for consumer goods. In this article, we argue that decisions about pursuing health care services are distinguished by informational asymmetries, high stakes, and patient vulnerabilities, grounding fiduciary responsibilities on the part (...) of health care providers and health care institutions. Using examples, we illustrate how common advertising techniques may mislead patients and compromise fiduciary relationships, thereby posing ethical risks to patients, providers, health care institutions, and society. We conclude by proposing that these risks justify new standards for advertising when considered as part of the moral obligation of health care institutions and suggest that mechanisms currently in place to regulate advertising for prescription pharmaceuticals should be applied to advertising for health care services more broadly. (shrink)

In bioethics, discussions of justice have tended to focus on questions of fairness in access to health care: is there a right to medical treatment, and how should priorities be set when medical resources are scarce. But health care is only one of many factors that determine the extent to which people live healthy lives, and fairness is not the only consideration in determining whether a health policy is just. In this pathbreaking book, senior bioethicists (...) Powers and Faden confront foundational issues about health and justice. How much inequality in health can a just society tolerate. The audience for the book is scholars and students of bioethics and moral and political philosophy, as well as anyone interested in public health and health policy. (shrink)

Purpose This paper aims to use the writings of Mikhail Bakhtin to reveal new insights into the role and impact of social media in health-care settings. Design/methodology/approach With the help of Bakhtin’s constructs of dialogism, polyphony, heteroglossia and carnival, the power and influences of the social media phenomenon in health-care settings, are explored. Findings It is apparent from the in-depth analysis conducted that there is a delicate balance between the need to increase dialogue and the (...) need to safeguard public health, in the use of social media for health-related communication. Bakhtin‘s constructs elucidate this delicate balance and highlight the need for health-care providers that use social media to find the right balance between these competing communicational priorities. Originality/value This paper advances a nascent theoretical approach to social media research. By applying Bakhtinian ideas to consumer health informatics, this paper has the potential to open a new approach to theorizing the role of social software in health-care settings. Stakeholders in digital health will find this paper useful, as it opens up dialogue to further discuss the role of social media in health care. (shrink)

Abstract:This paper utilizes a qualitative case study of the health care industry and a recent legal case to demonstrate that stakeholder theory’s focus on ethics, without recognition of the effects of incentives, severely limits the theory’s ability to provide managerial direction and explain managerial behavior. While ethics provide a basis for stakeholder prioritization, incentives influence whether managerial action is consistent with that prioritization. Our health care examples highlight this and other limitations of stakeholder theory and demonstrate (...) the explanatory and directive power added by the inclusion of the interactive effects of ethics and incentives in stakeholder ordering. (shrink)

Although the field of surgical ethics focuses primarily on informed consent, surgical decision‐making, and research ethics, some surgeons have started to consider ethical questions regarding justice and solidarity with poor and minoritized populations. To date, those calling for social justice in surgical care have emphasized increased diversity within the ranks of the surgical profession. This article, in contrast, foregrounds the agency of those most affected by injustice by bringing to bear an ethic of accompaniment. The ethic of accompaniment is (...) born from a theological tradition that has motivated work to improve health outcomes in those at the margins through its emphasis on listening, solidarity against systemic drivers of disease, and proximity to individuals and communities. Through a review of surgical ethics and exploration of a central patient case, we argue for applying an ethic of accompaniment to the care of surgical patients and their communities. (shrink)

Background In Scandinavia 13–28% of gynecology patients have experienced abuse in health care in their life time, which contradicts the ethical obligations not to harm the patient and to protect the patient's dignity. Concerning learning to act ethically, scholars have emphasized the importance of combining theoretical and practical dimensions. This article explores Forum Play as a way of learning to act ethically in abusive situations in health care. Method Ten health-care workers participating in a (...) Forum Play course took part in this study. To explore participants' experiences of Forum Play, semi-structured interviews were conducted and processed by using the grounded theory analysis techniques of coding and constant comparison. Results The analysis resulted in the core category “developing response–ability.” It encompasses the processes bringing about the ability to respond adequately to situations where abuse occurs and the conditions for these processes, as well as the participants' achieved understanding of the third person's potential to act in a situation with a power imbalance. Forum Play allows participants to reflect on both verbal and body language, and gives them time to enact and think through issues of moral agency. Conclusion The simulated reality of Forum Play offers a platform where learning to act ethically in abusive situations in health care is facilitated by providing a safe space, suspending constricting structural conditions such as hierarchies and lack of time, fostering moral imagination, allowing creativity in developing and trying out a variety of acting alternatives, and reflecting upon the observed and experienced situation. (shrink)

Postdisciplinarity in mental health‐care: an Australian viewpointThis paper outlines some of the powerful forces progressively undermining the conceptual and practical foundations upon which the major disciplines have been established, and dissolving the boundaries which have traditionally distinguished them from each other, particularly those disciplines involved in the healthcare enterprise. It discusses some of the implications of these processes for mental health nursing, and champions a new cadre of ‘postdisciplinary’ staff, comprising a graduate generic mental healthcare worker and (...) a postgraduate clinical specialist. It is argued that such a specialist — a ‘Generic Mental Health Worker’— should be welcomed by all those who want to see improved quality of care in mental health services rather than defend a failing system. (shrink)

This article analyzes the contribution Christian ethics might be able to make to the ethical debate on policy and caregiving in health and social care in the United Kingdom. The article deals particularly with the concepts of solidarity and subsidiarity which are essential in Christian social ethics and health care ethics, and which may be relevant for the ethical debate on health and social caregiving in the United Kingdom. An important argument in the article is (...) that utilitarian and market-driven policies in the National Health Service (NHS) and the social care system have marginalized the position of the elderly and have seriously impoverished the quality of care for the elderly. The neglect of the elderly and other vulnerable groups is also the result of widespread consumerist attitudes among patients and of libertarian models of noninterference which are affirmed by a public ethos of self-sufficiency and counter-dependency. Those who need care dare not make their need known to others and ask for help, while simultaneously those who could help are so intimidated by the public affirmation of privacy and negative rights that they do not dare to offer help except if this is explicitly demanded. This distant and standoffish attitude is in an important way responsible for the fact that the voice of those in need is altogether lost to the public forum. Christian ethics puts much emphasis on responsibility and solidarity with the needy other but is not able to have much impact on the delivery of care in a secularized society and health care system like the NHS. Nonetheless, Christianity still has a powerful and respected voice, by speaking up for those who cannot speak for themselves, such as the elderly and the handicapped. Christians can find allies in the ethics of care and other relational approaches in health care ethics in order to combat libertarianism, consumerism, and utilitarianism. (shrink)

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health (...) class='Hi'>Care Ethics Consultants, the American Society for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here. (shrink)

American bioethics has served as a safety net for the rich and powerful, often failing to protect minorities and the economically disadvantaged. For example, minorities and the economically disadvantaged are often unduly influenced into participating in clinical trials that promise monetary gain or access to health care. This is a violation of the bioethical principle of “respect for persons,” which requires that informed consent for participation in clinical trials is voluntary and free of undue influence. Promises of access (...) to health care invalidate the voluntariness of informed consent not only because it unduly induces minorities and the economically disadvantaged to participate in clinical trials to obtain access to potentially life saving health care, but it is also manipulative because some times the clinical trial is conducted by the very institutions that are denying minorities and the economically disadvantaged access to health care. To measure whether consent is voluntary and free of undue influence, federal agencies should require researchers to use the Vulnerability and Equity Impact Assessment tool, which I have created based on the Health Equity Impact Assessment tool, to determine whether minorities and the economically disadvantaged are being unduly influenced into participating in clinical trials in violation of the “respect for persons” principle. (shrink)

Many journalism organizations have published codes of ethics in recent years. The Association of Newspaper Editors, for example, lists 47 different codes on its website. But an organization of health care journalists felt that none of those codes addressed the unique challenges of covering complex health care topics. The Association of Health Care Journalists (AHCJ) is an independent, non-profit organization dedicated to advancing public understanding of health care issues. Its mission is to (...) improve the quality, accuracy and visibility of health care reporting, writing and editing. AHCJ has written a statement of principles for its 750 members. In it, AHCJ states some of the unique challenges faced by journalists covering health care, and offers suggestions on how to face those challenges. Bioethicists are invited to comment on the statement, and to help generate continued discussion of the issues addressed therein. (shrink)

Lifestyle diseases constitute an increasing proportion of health problems and this trend is likely to continue. A better understanding of the responsibility argument is important for the assessment of policies aimed at meeting this challenge. Holding individuals accountable for their choices in the context of health care is, however, controversial. There are powerful arguments both for and against such policies. In this article the main arguments for and the traditional arguments against the use of individual responsibility as (...) a criterion for the distribution of scarce health resources will be briefly outlined. It is argued that one of the most prominent contemporary normative traditions, liberal egalitarianism, presents a way of holding individuals accountable for their choices that avoids most of the problems pointed out by the critics. The aim of the article is to propose a plausible interpretation of liberal egalitarianism with respect to responsibility and health care and assess it against reasonable counter-arguments. (shrink)