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Original Contribution: "Third Generation" Ethics: What Careproviders Should Do Before They Do Ethics

Edmund G. Howe, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 3-13.

Abstract: The author suggests that a “first generation” task in bioethics is to give patients the information they need; a “second generation” is to do this in the most effective way; and a “third generation” task is to avoid harming patients by imposing value biases. The author discusses ways to pursue this third generation task.

Abstract: While consensus exists among many practitioners of ethics consultation about the need for and identification of core competencies and standards, there has been virtually no attempt to determine how these competencies and standards are best taught and assessed. We believe that clinical ethics consultation has reached a state of sufficient maturity that expert practitioners can evaluate those who are new to the field. We will outline several steps that can facilitate the creation of a certification process for clinical ethics consultants, assuring the competency and quality of consultation for the patients, families, and healthcare professionals who utilize ethics consultation services.

Original Contribution: Accounting for Vulnerability to Illness and Social Disadvantage in Pandemic Critical Care Triage

Chris Kaposy, The Journal of Clinical Ethics 21, no. 1 (Spring 2010):23-9.

Original Contribution: A Physician’s Role Following a Breach of Electronic Health Information

Daniel Kim, Kristin Schleiter, Bette-Jane Crigger, John W. McMahon, Regina M. Benjamin, and Sharon P. Douglas, for the Council on Ethical and Judicial Affairs, American Medical Association, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 30-5.

Abstract: The Council on Ethical and Judicial Affairs of the American Medical Association examines physicians’ professional ethical responsibility in the event that the security of patients’ electronic records is breached. A physician’s obligation to respect confidentiality and guard a patient’s privacy is a well-established principle of professional ethics that dates back to the Hippocratic Oath.1 The American Medical Association (AMA) Code of Medical Ethics, in Opinion E-5.07, “Confidentiality: Computers,” sets out precautionary steps to protect the confidentiality of electronically stored health information.2 Current AMA policies do not address, however, physicians’ ethical responsibilities in the event that the security of electronic records is breached and patients’ data are inappropriately accessed. This report examines physicians’ professional ethical responsibility in this area.

Original Contribution: Practicing Preventive Ethics, Protecting Patients: Challenges of the Electronic Health Record

Valerie Satkoske and Lisa S. Parker, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 36-8.

Abstract: Implementation of guidelines regarding breaches of electronic health information requires an anticipatory stance and physician and patient  education regarding security and monitoring measures and methods of redress. Adopting a preventive ethics, rather than a crisis management, model may also increase physician awareness of how the information they choose to include and privilege within the health record may expose patients to added harms if not done mindfully.

Original Contribution: Breaches of Health Information: Are Electronic Records Different from Paper Records?

Robert M. Sade, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 39-41.

Abstract: Breaches of electronic medical records constitute a type of healthcare error, but should be considered separately from other types of errors because the national focus on the security of electronic data justifies special treatment of medical information breaches. Guidelines for protecting electronic medical records should be applied equally to paper medical records.

The American Medical Association (AMA) Council on Ethical and Judicial Affairs (CEJA) provides guidelines for the first time on how physicians should respond to a breach in the security of an electronic medical record (EMR). In their report, “A Physician’s Role Following a Breach of Electronic Health Information,” CEJA recommends that physicians do what they can to ensure that a breach of an EMR is reported to the patient promptly, along with a description of how the breach occurred, what information was disclosed, the potential consequences of the breach, any corrective actions that have been undertaken by responsible individuals or agencies, and how the patient might help to minimize adverse consequences. At all times, the report emphasizes, the physician should hold the patient’s interests above those of the physician and any group or institution.

The recommendations that appear at the end of CEJA reports become an opinion in the Code of Medical Ethics (the Code), a body of ethical guidelines that is widely used by state medical licensing boards and by courts at various levels of jurisdiction in adjudicating allegations of physicians’ ethical transgressions. Therefore, this report is important and is worthy of close scrutiny.

Original Contribution: Breach Notification and the Law

Sharona Hoffman, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 42-43.

Abstract: The American Medical Association Council on Ethical and Judicial Affairs (CEJA) has written a position paper on physicians’ ethical responsibilities in the event that the security of patients’ electronic health information has been breached. The report offers compelling ethical and practical justifications for notification requirements and articulates guidelines for clinicians. This commentary addresses a gap in the report. It outlines the new legal duty to disclose security breaches, established by the 2009 HITECH Act, which is only briefly mentioned in the report. The commentary also analyzes the CEJA recommendations in light of the legal mandate and suggests that the guidance would benefit from further clarification.

Original Contribution: Therapeutic Privilege

S. Van McCrary, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 44.

An original poem.

Original Contribution: Patients’ Expressed and Unexpressed Needs for Information for Informed Consent

Rebecca L. Volpe, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 45-57.

Abstract: Informed consent is the practical application of the principle of autonomy, and two of the five core features of informed consent are related to information. Researchers have reported on patients’ expressed needs for information, such as their stated desires forthe quantity of and the source of information. A separate body of research has examined patients’ unexpressed needs for information from the perspective of cognitive psychology, such as the emotional tone and order of information. This article suggests that the autonomy of patients is best served by meeting their expressed and unexpressed information needs in tandem.

Original Contribution: Reasoning in the Capacity to Make Medical Decisions: The Consideration of Values

Michele J. Karel, Ronald J. Gurrera, Bret Hicken, and Jennifer Moye, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 58-71.

Abstract: Purpose. To examine the contribution of “values-based reasoning” in evaluating older adults’ capacity to make medical decisions.

Design and Methods. Older men with schizophrenia (n=20) or dementia (n=20), and a primary care comparison group (n=19), completed cognitive and psychiatric screening and an interview to determine their capacity to make medical decisions, which included a component on values. All of the participants were receiving treatment at Veterans Administration (VA) outpatient clinics.

Results. Participants varied widely in the activities and relationships they most valued, the extent to which religious beliefs would influence healthcare decisions, and in ratings of the importance of preserving quality versus length of life. Most participants preferred shared decision making with doctor, family, or both. Individuals with schizophrenia or dementia performed worse than a primary care comparison group in reasoning measured by the ability to list risks and benefits and compare choices. Individuals with dementia performed comparably to the primary care group in reasoning measured by the ability to justify choices in terms of valued abilities or activities, whereas individuals with schizophrenia performed relatively worse compared to the other two groups. Compared to primary care patients, participants with schizophrenia and with dementia were impaired on the ability to explain treatment choices in terms of valued relationships.

Conclusion. Medical decision making may be influenced by strongly held values and beliefs, emotions, and long life experience. To date, these issues have not been explicitly included in structured evaluations of medical decision-making capacity. This study demonstrated that it is possible to inquire of and elicit a range of healthcare related values and preferences from older adults with dementia or schizophrenia, and individuals with mild to moderate dementia may be able to discuss healthcare options in relation to their values. However, how best to incorporate a values assessment into a structured capacity evaluation deserves further research attention.

Original Contribution: Legal Briefing: Informed Consent

Thaddeus Mason Pope, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 72-82.

Abstract: This issue’s “Legal Briefing” column covers legal developments pertaining to informed consent. Not only has this topic been the subject of recent articles in this journal, but it also been the subject of numerous public and professional discussions over the past several months.Legal developments concerning informed consent can be usefully grouped into nine categories:

        1. General disclosure standards in the clinical context

        2. Shared decision making

        3. Staturorily mandated abortion disclosures

        4. Staturorily mandated end-of-life counseling

        5. Other staturorily mandated subject-specific disclosures

        6. U.S. Food and Drug Administration (FDA) labeling and federal pre-emption of state informed consent law

        7. Relaxed informed consent for HIV testing

        8. General disclosure standards in the research context

        9. Issues on the horizon.

Original Contribution: Legal Update

Thaddeus Mason Pope, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 83-5.

Abstract: This column concisely reviews: significant legal developments concerning medical futility and assisted suicide; three late-2009, early 2010 court cases involving neonatal medical futility disputes; and a number of cases involving the criminal enforcement of assisted suicide laws, as well as recent court cases and legislation aimed to legalize assisted suicide. “Legal Briefing” provides a more comprehensive summary of legal developments on one or two issues, while “Legal Update” more concisely reviews significant recent legal developments that affect clinical bioethics. In the past several months, there have been notable developments concerning medical futility and assisted suicide.

Correspondence: Where Is the Voice of the Man the Child Will Become?

John V. Geisheker, The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 86-8.

A letter to the editor.

Original Contribution: Sliding “Off” the Sliding Scale: Allowing Hope, Determining Capacity, and Providing Meaning When an Illness Is Becoming Worse But a Treatment May Help

Edmund G. Howe, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 91-100.

Abstract: In this issue of The Journal of Clinical Ethics, Emily Bell and Eric Racine are guest editors of a special section focusing on the use of deep brain stimulation (DBS) to treat Parkinson’s disease. In “Deep Brain Stimulation, Ethics, and Society,” Bell and Racine report that DBS already has been used to treat more than 50,000 patients. The ethical issues raised in this special section are important not only in regard to Parkinson’s disease and DBS, but in many areas of medicine. The articles discuss sound, state-of-the-art ethical approaches. This introduction to the issue presents approaches that are adjunctive and intended to increase careproviders’ options, that should increase careproviders’ ability to individualize the care that they provide to their patients.

Original Contribution: Deep Brain Stimulation, Ethics, and Society

Emily Bell and Eric Racine, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 101-3.

Abstract: Discussion surrounding ethical and social issues in deep brain stimulation (DBS) has increased. This article introduces a special section on the ethics of DBS in The Journal of Clinical Ethics.

Original Contribution: Consent to Deep Brain Stimulation for Neurological and Psychiatric Disorders

Walter Glannon, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 104-11.

Abstract: Deep brain stimulation (DBS) of the globus pallidus interna and subthalamic nucleus has restored some degree of motor control in many patients in advanced stages of Parkinson’s disease. DBS has also been used to treat dystonia, essential tremor (progressive neurological condition causing trembling), chronic pain, obsessive-compulsive disorder, Tourette’s syndrome, major depressive disorder, obesity, cerebral palsy, and the minimally conscious state. Although the underlying mechanisms of the technique are still not clear, DBS can modulate underactive or overactive neural circuits and restore disrupted communication between and among groups of neurons in interacting regions of the brain. This can control and relieve many symptoms associated with a range of neurological and psychiatric disorders.

But the procedures of implanting and stimulating the electrodes are brain-invasive and entail significant risks. Some patients receiving DBS have experienced intracerebral hemorrhage, infection, cognitive disturbances such as impulsive behavior, and affective disturbances such as mania. It is not known whether continuous electrical stimulation of the brain would reshape synaptic connectivity and permanently alter neural circuits in ways that may not be salutary. The risk of these effects indicates that DBS should be used only when a patient’s condition is refractory to all other interventions and when there is a high probability that the technique will benefit the patient and improve his or her quality of life. If a patient’s quality of life is poor and all other treatment options have been exhausted, then the likelihood of benefit can justify physicians’ exposing patients to some risk. The clinical and ethical significance of the risk in DBS underscores the obligation of physicians to obtain fully informed consent from patients undergoing the procedure.

Original Contribution: Hope and Patients’ Expectations in Deep Brain Stimulation: Healthcare Providers’ Perspectives and Approaches

Emily Bell, Bruce Maxwell, Mary Pat McAndrews, Abbas Sadikot, and Eric Racine, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 112-24.

Abstract: In this article we report relevant data that shed light on the topic of hope and patients’ expectations in the use of DBS, for standard, approved, and established indications, based on a broader qualitative study on the ethical and social challenges that healthcare providers face in the field of DBS.

Original Contribution: Conflicts of Interest in Deep Brain Stimulation Research and the Ethics of Transparency

Joseph J. Fins and Nicholas D. Schiff, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 125-32.

Abstract: In this article we will draw on experiences from our own research on deep brain stimulation of the central thalamus in the minimally conscious state. We describe ethical challenges faced in clinical research involving medical devices and offer several cautionary notes about its funding and the interplay of market forces and scientific inquiry and suggest some reforms.

Original Contribution: Philosophical Reflections on Narrative and Deep Brain Stimulation

Marya Schechtman, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 133-39.

Abstract: Deep brain stimulation (DBS) has in some cases been associated with significant psychological effects and/or personality change. These effects occur sometimes as acute changes experienced intraoperatively or during the initial setting of the stimulator and sometimes as longer term progressive changes in the months following surgery. Sometimes they are the intended outcome of treatment, and in other cases they are an unintended side-effect. In all of these circumstances some patients and caregivers have described the psychological effects of DBS as frightening or disconcerting. I trace the source of these negative reactions to the fear that stimulation-related psychological and personality changes represent a threat to personal identity and agency. This issue has implications both for philosophical theories of personal identity and agency and for clinical concerns. A narrative account of personal identity is developed to illuminate the nature of the threat to identity and agency DBS potentially poses, and to suggest steps that might be taken to mitigate and avoid these threats.

Original Contribution: Consenting to the Ineffable: The Problem of Neuromodulation and Altered Consciousness

T. Forcht Dagi, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 140-2.

Abstract: Both the therapeutic effects and the complications associated with neuromodulation of the brain can result in experiences that are neither reliably predictable nor easily describable. For this reason, protocols for informed consent must be carefully tailored to the procedure, the indication, and the patient, and satisfy very strict, often subjective patient standards of disclosure. These three elements can be combined to categorize procedures for neuromodulation (and as well as others) and optimize the protection of the patient.

Original Contribution: Infants and Children with Hearing Loss Need Early Language Access

Poorna Kushalnagar, Gaurav Mathur, Christopher J. Moreland, Donna Jo Napoli, Wendy Osterling, Carol Padden, and Christian Rathmann, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 143-54.

Abstract: Around 96 percent of children with hearing loss are born to parents with intact hearing, who may initially know little about deafness or sign language. Therefore, such parents will need information and support in making decisions about the medical, linguistic, and educational management of their child. Some of these decisions are time-sensitive and irreversible and come at a moment of emotional turmoil and vulnerability (when some parents grieve the loss of a normally hearing child). Clinical research indicates that a deaf child’s poor communication skills can be made worse by increased level of parental depression. Given this, the importance of reliable and up-to-date support for parents’ decisions is critical to the overall well-being of their child. In raising and educating a child, parents are often offered an exclusive choice between an oral environment (including assistive technology, speech reading, and voicing) and a signing environment. A heated controversy surrounds this choice, and has since at least the late 19th century, beginning with the International Congress on the Education of the Deaf in Milan, held in 1880. While families seek advice from many sources, including, increasingly, the internet, the primary care physician (PCP) is the professional medical figure the family interacts with repeatedly.

Original Contribution: In Addition to Benefits and Harms: The Relevance of the Political

Barbara Russell, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 155-8.

Abstract: When working with parents of deaf children, clinicians and educators should explicitly add political-justice considerations to benefit-harm considerations in their ethical analyses of available interventions to prevent or reverse children’s hearing impairments.

Original Contribution: Language, Identity, and Belonging: Deaf Cultural and Narrative Perspectives

Rebecca Garden, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 159-62.

Abstract: By acquiring an understanding of the cultural meaning of deafness and acting as a bridge to resources and opportunities, clinicians may better serve children and parents.

Original Contribution: Legal Briefing: Conscience Clauses and Conscientious Refusal

Thaddeus Mason Pope, The Journal of Clinical Ethics 21, no. 2 (Summer 2010): 163-80.

Abstract: This issue’s “Legal Briefing” column covers legal developments pertaining to conscience clauses and conscientious refusal. Not only has this topic been the subject of recent articles in this journal, but it has also been the subject of numerous public and professional discussions. Over the past several months, conscientious refusal disputes have had an unusually high profile not only in courthouses, but also in legislative and regulatory halls across the United States.

Healthcare providers’ own moral beliefs have been obstructing and are expected to increasingly obstruct patients’ access to medical services. For example, some providers, on ethical or moral grounds, have denied: (1) sterilization procedures to pregnant patients, (2) pain medications in end-of-life situations, and (3) information about emergency contraception to rape victims. On the other hand, many healthcare providers have been forced to provide medical treatment that is inconsistent with their moral beliefs.

There are two fundamental types of conscientious objection laws. First, there are laws that permit healthcare workers to refuse providing — on ethical, moral, or religious grounds — healthcare services that they might otherwise have a legal or employer-mandated obligation to provide. Second, there are laws directed at forcing healthcare workers to provide services to which they might have ethical, moral, or religious objections. Both types of laws are rarely comprehensive, but instead target: (1) certain types of healthcare providers, (2) specific categories of healthcare services, (3) specific patient circumstances, and (4) certain conditions under which a right or obligation is triggered. For the sake of clarity, I have grouped recent legal developments concerning conscientious refusal into eight categories:

1.   Abortion: right to refuse

2.   Abortion: duty to provide

3.   Contraception: right to refuse

4.   Contraception: duty to provide

5.   Sterilization: right to refuse

6.   Fertility, HIV, vaccines, counseling

7.   End-of-life measures: right to refuse

8.   Comprehensive laws: right to refuse.

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