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J Clin Ethics [journal]
- Modern clinical research: guidelines for the practicing clinician or source of confusion? [Journal Article]
- J Clin Ethics 2013; 24(4):395-6.
There is a dilemma in modern medicine, and, as a general family practitioner, this dilemma has great impact on me as a professional with a responsibility to my patients, and on the treatments I prescribe. Every day we receive a lot of updated information about relevant issues in treatment of various conditions we encounter in our daily practice. There is a great deal of interesting, serious research; however, frequently results and conclusions are very different and at times, contradictory. It is extremely difficult to evaluate updated research information, and to understand trends in current medicine. Our responsibility to our patients is to find a solution for this problem.
- Problems with the consensus definition of the therapeutic misconception. [Comment, Journal Article]
- J Clin Ethics 2013; 24(4):387-94.
In a previous article,' I attempted to assess the likely impact of the most prominent versions of the therapeutic misconception (TM) on research subjects' informed consent. I concluded that the TM is not nearly as significant a concern as is commonly thought, and that focusing on it is more likely to undermine than promote research subjects' informed consent. A recent commentary rejects these conclusions, as least as they pertain to the "consensus" definition of the TM.2 The authors of the commentary argue that work on the TM remains central to ensuring the appropriateness of research subjects' consent and, by implication, the ethical acceptability of clinical research. The present work evaluates the arguments offered in support of these claims. This analysis reveals that the authors offer few substantive responses to my arguments, and the responses they do offer fail to undermine my prior conclusions. Furthermore, consideration of an additional issue-the emergence of learning healthcare systems-suggests that the TM is likely to be even less significant in the future, hence, focusing on it may be even more problematic than I argued previously.
- Why we should continue to worry about the therapeutic misconception. [Comment, Journal Article]
- J Clin Ethics 2013; 24(4):381-6.
In a recent article in The Journal of Clinical Ethics, David Wendler argues that worries about the therapeutic misconception (TM) are not only misconceived, but detract from the larger agenda of a proper informed consent for subjects involved in clinical research.1 By contrast, we argue that Wendler mischaracterizes those who support TM research, and that his arguments are fragmentary, often illogical, and neglect a critical difference between clinical care and clinical research. A clear explanation about the chief aim of research is, in fact, what gives the other elements in a consent process their meaning. We argue that informed consent must be both trial-specific and context-sensitive, and that concern about the TM is needed now more than ever.
- Ethically informed pragmatic conditions for organ donation after cardiocirculatory death: could they assist in policy development? [Journal Article]
- J Clin Ethics 2013; 24(4):373-80.
The modern practice of organ donation after cardiocirculatory death (DCD) emerged in the 1990s as a response to the alarmingly wide gap between the number of transplantable organs available through organ donation after neurological death and the urgent organ transplantation needs of persons in end-organ failure. Various important ethical dimensions of DCD have been considered and debated by prominent organ donation/transplantation theorists and clinicians. In this article, consideration of some of these ethical elements provides a foundation for a proposed set of ethically informed, pragmatic conditions that could assist in the development of health policies to guide the practice of organ donation after cardiocirculatory death.
- Organ donation among undocumented hispanic immigrants: an assessment of knowledge and attitudes. [Journal Article]
- J Clin Ethics 2013; 24(4):364-72.
Undocumented immigrants can donate their organs, but lack access to organ transplantation.This challenges foundational principles of organ donation: fairness and informed consent. Little is known about undocumented immigrants' knowledge of barriers to their access to organ transplantation or how this might affect their decision to donate their organs.The study was performed in an urban, university-affiliated, safety-net hospital.We interviewed hospitalized patients who self-identified as undocumented immigrants and were unaware of having any contraindication to organ donation (for example, cancer). We first recorded their demographic characteristics and knowledge and attitudes regarding organ donation. We then assessed the effects of informing participants about limits to their access to organ transplants on their willingness to donate.This group of 59 uninsured Hispanic immigrants had adequate knowledge about organ donation. Participants were suspicious about inequality within the medical system, but most were willing to donate their organs (74 percent). Most participants (74 percent) were aware that they would have to pay to receive an organ, but they dramatically underestimated the out-of-pocket expenses.Yet willingness to donate their organs was unaffected by participants being explicitly informed of the low likelihood that they would be able to afford to receive an organ transplant.Despite being well informed about the organ donation system, undocumented Hispanic immigrants underestimate the costs and overestimate their likelihood of receiving an organ. Even when they are given this information, they remain willing to donate their own organs.
- Patients' experiences with disclosure of a large-scale adverse event. [Journal Article, Research Support, Non-U.S. Gov't, Research Support, U.S. Gov't, P.H.S.]
- J Clin Ethics 2013; 24(4):353-63.
Hospitals face a disclosure dilemma when large-scale adverse events affect multiple patients and the chance of harm is extremely low. Understanding the perspectives of patients who have received disclosures following such events could help institutions develop communication plans that are commensurate with the perceived or real harm and scale of the event.A mailed survey was conducted in 2008 of 266 University of Washington Medical Center (UWMC) patients who received written disclosure in 2004 about a large-scale, low-harm/low-risk adverse event involving an incomplete endoscope cleaning process. The survey measured patients' satisfaction with this disclosure, their concerns about healthcare outcomes, and their recommendations for future communication, given similar circumstances.Surveys were received from 127 of 266 (48 percent) of eligible respondents; 98 percent thought that UWMC was right to inform them about this event, and mean satisfaction with the disclosure was 7.7 on a 0 to 10 scale. Of the 127 respondents, 64 percent were somewhat or very concerned that the endoscope cleaning problem might cause them health problems; 60 percent reported their impressions of UWMC's honesty and integrity had increased; 31 percent said their perceptions of the quality of care had increased; 94 percent agreed that institutions should tell patients about any error in their care, even when the risk of harm was low, although 28 percent agreed that such notifications would make them anxious. Respondents who reported concern that the event could cause them health problems were less likely to be satisfied with the institution's disclosure. Patients cited their right to know information material to their own health and healthcare as an important reason for disclosure.Recipients of disclosure of a large-scale, low-harm/low-risk event overwhelmingly supported being told of the event and endorsed notification of patients for similar events in the future. Although informing patients may cause concern for some, institutions should ensure their disclosure policies and procedures reflect their patients' preferences.
- Challenges to culturally sensitive care for elderly chinese patients: a first-generation chinese-american perspective. [Journal Article]
- J Clin Ethics 2013; 24(4):343-52.
Physicians and medical institutions in the United States are placing increasing emphasis on providing culturally sensitive care for patients, such as implementing a Confucian family-based model of medical decision making when caring for elderly Chinese patients. In this article, I articulate various reasons why deferring to the family is not a guarantee of culturally sensitive care, particularly when family members are first-generation Chinese-Americans. Nonetheless, I offer several suggestions to help physicians, medical institutions, and family members to provide more culturally sensitive care for elderly Chinese patients.
- Familiar interests and strange analogies: baergen and woodhouse on extra-familial interests. [Journal Article]
- J Clin Ethics 2013; 24(4):338-42.
The article by Professor Baergen and Dr. Woodhouse makes a succinct and serious contribution to progress in bioethical understanding of deciding for others. They begin with what is by now a familiar claim: family proxy decision makers may sometimes make decisions on behalf of incapacitated relatives that depart from what might be optimal from the patient's point of view, since the well-being of family members, or of the family as such, may be substantially affected by the direction of a patient's care.They then develop this idea, noting that others apart from family members can also be substantially affected by a patient's treatment, and arguing that the interests of strangers ought also to sometimes have a role in determining the aims and means of a patient's treatment. Baergen and Woodhouse also devote attention to how extra-familial interests might be implemented in medical decision making. While I unearth a troubling consequence of the effort to realize their theoretical conclusion practically, my chief task is to point to some disanalogies between families and strangers, and consider the extent to which they call into question the relevance of the interests of strangers to the treatment of patients.
- Surrogates and extra-familial interests. [Journal Article]
- J Clin Ethics 2013; 24(4):332-7.
A case is presented in which the therapeutic interests of the patient conflict with the safety of a community, and in which the surrogate decision maker has very limited knowledge of or concern for the patient's preferences. The substituted judgment and best interest (or rational patient) standards for surrogate decision making are problematic in this case. It is argued that the interests of even those outside the family ought to be taken seriously when making decisions about such cases, and it is proposed that clinical ethics committees could play a new role here. This case also illustrates the difficulties of making decisions regarding the treatment of a very unlikable patient.
- On the lingua franca of clinical ethics. [Journal Article]
- J Clin Ethics 2013; 24(4):323-31.
In this 25-year retrospective on the state of clinical ethics, and the anniversary of the founding of The Journal of Clinical Ethics, the author comments on the state of the field. He argues that the language of bioethics, as used in practice, seems dated and out of touch with a clinical reality marked by emerging technologies and the advent of new fields like palliative medicine. Reflecting on his experiences as a clinician and clinical ethicist, the author worries about the emergence of a shallow bioethics, which is the product of a lingua franca. This linguistic amalgam is a weak composite in which concepts are simplified and nuance is overlooked, leading to interpretative errors. The best of ethical reasoning or clinical decision making can be lost in translation. Instead of the well-worn arguments over the relative worth of modes of ethical analysis, like principlism or pragmatism, the author argues that the emphasis should be on the cultivation of the "linguistic" skills necessary for translating any critical method in order to replace the lingua franca of clinical ethics with a more substantial discourse worthy of the complexity of the clinic.Through the emergence of such a shared language, at the interface of the sciences and the humanities, this multidisciplinary field can evolve towards more authentic interdisciplinarity.