Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical (...) analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement. (shrink)

About a week after Maran Wolston was prescribed Copaxone, a drug for multiple sclerosis, she got a phone call from a nurse at an organization called Shared Solutions. The organization was familiar to Wolston; when her neurologist had asked permission to share her health information with Shared Solutions, Wolston had agreed, assuming it was connected to her health insurance.The nurse who called Wolston was checking in to see how the treatment was going. It was not going well. While Copaxone is (...) not typically associated with some of the unpleasant side effects of other MS drugs, it does have at least one serious drawback: the drug must be injected every day. The injections can be brutally painful. “No matter where I injected the drug each day, the injection site swelled up into a huge welt and felt like a gigantic bee sting,” Wolston writes. (shrink)

Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute ‘right’ of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw.This does not imply (...) that that there should be a complete absence of rights, or, indeed, an abandonment of the right to withdraw. The point of this paper is to show that the supposed unconditional or absolute nature of these rights may be self‐defeating and so fail to respect the autonomy of participants. In addition, and on a more positive note, I suggest that, attaching certain conditions on the right to withdraw, may better respect the autonomy of these participants by underlining the idea that autonomy is more than mere whim or indifference to the fate of others. On the contrary, research staff are currently unable to ‘push’ participants, who may merely have logistical difficulties unrelated to the research itself, but who really want to stay the course, for fear of coercing them. Furthermore, researchers now try to ‘screen out’ people they think may be unreliable to protect the science of the study and so groups at risk of dropping out may be unfairly denied access to research treatments. I conclude that on‐going negotiation between the relevant parties could be on balance the only truly acceptable way forward but concede certain important limitations to take into account. (shrink)

Modern parents, particularly in countries with highly developed public health systems, are not short of guidance about how to feed their children.1 Advice flows freely from many sources. State organs, particularly health departments and health care providers, offer advice with a reassuringly official provenance. Nutritional and pediatric societies, health-related charities, childcare manuals, parenting websites, and nutrition publications draw on scientific research in formulating their advice. Newspapers and magazines report the findings of the latest nutrition studies. Advice is also relayed informally (...) and personally, often with glosses drawn from personal experience.. (shrink)

Advocates of “concordance” describe it as a new model of shared decision-making between physicians and patients based on a partnership of equals. “Concordance” is meant to make obsolete the notion of “compliance,” in which patients are seen as, ideally, following doctors’ orders. This essay offers a critical view of concordance, arguing that the literature itself on concordance, including materials at the web site of Medicines Partnership, the implementation arm in Great Britain of the concordance model, is full of contradiction; concordance, (...) in fact, harbors an ideology of compliance. The essay suggests that an improvement in patient medication use will more likely come from a frank consideration of the relation of compliance issues and commercial ones, and that a key question across domains is, “how are patients/health agents/consumers persuaded to acquire certain drugs and take them as directed?”. (shrink)

In 2013, in accordance with a provision in the Patient Protection and Affordable Care Act, the U.S. government began fining hospitals with “excessive” patient readmission rates. Those working to respond to this issue have identified discharge communication with patients as a critical component. In response to this exigency and to contribute to the conversation in the medical humanities about the field’s purview and orientation, this article analyzes studies of and texts about communication in health and medicine, ultimately arguing that the (...) on-going circulation of compliance rhetoric and assumptions has limited efforts to improve patient communication. The article, furthermore, considers that humanist ideals of agentic action, the patient-centered care movement’s emphasis on the patient, and biomedicine’s tendency to treat evidence-based knowledge as fixed and given may have combined to support a rationale for using patient adherence to treatment guidelines as metrics in measurement studies designed to identify effective communication strategies. Finally, the article proposes that those working in the medical humanities consider the value of interdisciplinary posthumanist scholarship—specifically, its treatment of agency and knowledge as emergent, distributed, and contingent—and its potential to transform or extend in productive ways the conversation about what constitutes effective communication with patients. (shrink)

Noncompliance exasperates health care professionals, leaves them worrying about the effective outcome of medical care, and results in noncompliant patients being labelled as 'difficult' or 'troublesome'. It is suggested that professionals who label a patient as noncompliant are following convenient paternalistic principles rather than considering the impact of a prescribed regimen on an individual patient. In this paper, the author considers autonomy and respect to be foremost in patient care. Further, compliance does not necessarily indicate that both professional and patient (...) have developed a collaborative understanding relationship. Noncompliance is described as a lack of recognition by the health care professional of the meaning of the regimen to the patient. Treatment interventions will be most successful when the patient participates in the prescription. Without acknowledgement of the patient as an equal partner, and listening to his or her narrative, care will be, at best, paternalistic. Les soignants peuvent devenir exasperes par les malades qui n'acquiescent pas à leur traitement. Cela laisse les soignants souciant des résultats de leurs soins et abouti à ce que les malades sont qualifiés de difficiles ou insoumis. On propose ici que le personnel qui traite les malades d'insoumis suit des principes paternalistes plutôt que de considérer les suites des regimes prescrits pour les particuliers. Dans cet article l'auteur considère l'autonomie et le respet comme primordiaux pour les soins. L'acqiescement ne veut pas toujours dire que malades et infirmiers/ères ont développés des rapports collaborateurs. Le refus d'acquiescer est aperçu comme un manque de reconnaissance par la personne soignante de la significance du traitement médical du malade. Les interventions réussissent le mieux quant les malades participent à leurs soins. Si l'on n'accepte pas les malades comme partenaires en écoutant leurs récits, les soins sont au plus du paternalisme. Die Ablehnung der verordneten Behandlung durch die Patienten kann das Pflege personal zur Verzweiflung bringen und den Ausgang der Behandlung in Frage stellen und führt dazu, die Patienten als schwierig oder problematisch einzustrafen. Hier wird die Ansicht vertreten, dass das Pflegepersonal, das Patienten als unkooperativ oder ablehnend bezeichnet, einem paternalistischen Prinzip folgt und nicht an die Wirkung denkt, die die verschriebene Behandlung auf einzelne Patienten hat. In diesem Artikel bezeichnet die Autorin die Selstbestimmung der Patienten und den Respekt ihnen gegenüber als das Wichtigste in der Krankenpflege. Fügsamkeit deutet nicht unbedingt auf eine Zusammenarbeit zwischen Patienten und Pflegenden hin. Zuwiderhandlung der Patienten wird als Mangel an Verständnis von Seiten des Pflegepersonals gesehen, das die Bedeutung, die die Behandlung für Patienten hat, nicht einzuschatzen weiss. Die Behandlung wird nur dann den grösstmöglichen Erfolg bringen, wenn die Patienten daran teilnehmen. Wenn Patienten nicht als gleichberechtigte Partner angesehen werden, deren Meinungen gehört und respektiert werden, ist die Pflege höchstens patemalistisch. (shrink)

ABSTRACT Accurate self‐administration of antiretroviral medication therapy for HIV/aids is a significant clinical and ethical concern because of its implications for individual morbidity and mortality, the health of the public, and escalating healthcare costs. However, the traditional construction of patient medication adherence is oversimplified, myopic, and ethically problematic. Adherence relies on existing social power structures and western normative assumptions about the proper roles of patients and providers, and principally focuses on patient variables, obscuring the powerful socioeconomic and institutional influences on (...) behaviour. Some professionals advocate for alternate approaches to adherence, but many of the available alternatives remain conceptually underdeveloped. Using HIV/aids as an exemplar, this paper presents medication practice as a theoretical reconstruction and explicates its conceptual and ethical evolution. We first propose that one of these alternatives, medication practice, broadens the understanding of individuals’ medication‐taking behaviour, speaks to the inherent power inequities in the patient‐provider interaction, and addresses the ethical shortcomings in the traditional construal. We then integrate medication practice with feminist thought, further validating individuals’ situated knowledge, choices, and multiple roles; more fully recognizing the individual as a multidimensional, autonomous human being; and reducing notions of obedience and deference to authority. Blame is thus extricated from the healthcare relationship, reshaping the traditionally adversarial components of the interaction, and eliminating the view of adherence as a patient problem in need of patient‐centred interventions. (shrink)

In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients’ preferences and autonomy in decision making around treatments. This ‘adherence-paradigm’ thus encompasses shared decision-making as an ideal and patient perspective and autonomy as guiding goals of care. What (...) this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter. (shrink)

Scientific reports about clinical research appear objective and straightforward. They describe a study's findings, methods, subject population, number of subjects, and contribution to existing knowledge. The overall picture is pristine: the research team establishes the requirements of study participation and subjects conform to these requirements. Readers are left with the impression that everything was done correctly, by the book.In other places, however, one finds a different and messier picture of clinical research. In this picture, research subjects deviate from the prescribed (...) plan. One author contrasted the “tidy graphics” and “crisp prose” of the New England Journal of Medicine's HIV/AIDS trial publications with reports that subjects shared medications and broke other trial rules. Awareness of this behavior, he wrote, could lead insiders to “conclude that knowledge was resting on something rather less solid than bedrock.”. (shrink)

ABSTRACT Accurate self‐administration of antiretroviral medication therapy for HIV/aids is a significant clinical and ethical concern because of its implications for individual morbidity and mortality, the health of the public, and escalating healthcare costs. However, the traditional construction of patient medication adherence is oversimplified, myopic, and ethically problematic. Adherence relies on existing social power structures and western normative assumptions about the proper roles of patients and providers, and principally focuses on patient variables, obscuring the powerful socioeconomic and institutional influences on (...) behaviour. Some professionals advocate for alternate approaches to adherence, but many of the available alternatives remain conceptually underdeveloped. Using HIV/aids as an exemplar, this paper presents medication practice as a theoretical reconstruction and explicates its conceptual and ethical evolution. We first propose that one of these alternatives, medication practice, broadens the understanding of individuals’ medication‐taking behaviour, speaks to the inherent power inequities in the patient‐provider interaction, and addresses the ethical shortcomings in the traditional construal. We then integrate medication practice with feminist thought, further validating individuals’ situated knowledge, choices, and multiple roles; more fully recognizing the individual as a multidimensional, autonomous human being; and reducing notions of obedience and deference to authority. Blame is thus extricated from the healthcare relationship, reshaping the traditionally adversarial components of the interaction, and eliminating the view of adherence as a patient problem in need of patient‐centred interventions. (shrink)

Recent literature has highlighted issues of racial discrimination in medicine. In order to explore the sometimes subtle influence of racial determinants in decisions about resource allocation, we present the case of a 53-year-old Australian Aboriginal woman with end-stage renal failure. The epidemiology of renal failure in the Australian Aboriginal population and amongst other indigenous peoples is discussed. We show that the use of utilitarian outcome criteria for resource allocation may embody subtle racial discrimination where consideration is not given to issues (...) of justice, race, culture and gender. It is only where the processes by which resources are allocated are transparent, clearly defined and based upon consultation with individual patients that issues and justice are likely to be adequately addressed. (shrink)

When a patient fails to follow the advice or prescription of a physician, she is termed to be "noncompliant" by the medical community. The medical community’s response to and understanding of patient noncompliance fails to acknowledge noncompliance as either a relational failure between physician and patient or as a patient choice. I offer an analysis of Immanuel Kant and Emmanuel Levinas that refocuses the issue of noncompliance by examining the physician role, the doctor–patient relationship, and the nature of responsibility.