Journal of Clinical Ethics, Fall 2010, volume 21, number 3
Original Contribution: All Careproviders Need More Opportunities to Share their Ethical Concerns with Others
Edmund G. Howe, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 179-88.
Abstract: Attention to the ethical concerns of healthcare aides can provide important information about patients’ needs to careproviders, improve the ethical environment of an institution, and benefit aides who suffer from bearing ethical concerns alone. All persons benefit from sharing their ethical concerns with others. Among other benefits, ethics consultation offers careproviders, caregivers, healthcare aides, patients, and patients’ loved ones an opportunity to have their concerns heard.
John Fletcher tried to follow every ethics consultation with a debriefing for all participants, including patients and family members, to increase the possibility for continued healing after the conclusion of the consultation, and there are good reasons to follow this practice.
Original Contribution: The Rational Choice Model in Family Decision Making at the End of Life
Alison Karasz, Galit Sacajiu, Misha Kogan, and Liza Watkins, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 189-200.
Abstract: Background. Most end-of-life decisions are made by family members. Current ethical guidelines for family decision making are based on a hierarchical model that emphasizes the patient’s wishes over his or her best interests. Evidence suggests that the model poorly reflects the strategies and priorities of many families.
Methods. Researchers observed and recorded 26 decision-making meetings between hospital staff and family members. Semi-structured follow-up interviews were conducted. Transcriptions were analyzed using qualitative techniques.
Results. For both staff and families, consideration of a patient’s best interests generally took priority over the patient’s wishes. Staff generally introduced discussion of the patient’s wishes for rhetorical purposes, such as persuasion. Competing moral frameworks, which de-emphasized the salience of patients’ autonomy and "right to choose," played a role in family decision making.
Conclusions. The priority given to the patients’ wishes in the hierarchical model does not reflect the priorities of staff and families in making decisions about end-of-life care.
Original Contribution: “Broken Covenant”: Healthcare Aides’ “Experience of the Ethical” in Caring for Dying Seniors in a Personal Care Home
Susan McClement, Michelle Lobchuk, Harvey Max Chochinov, and Ruth Dean, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 201-11.
Abstract. Canada’s population is aging, and seniors constitute the fastest growing demographic in the nation.1 The chronic health conditions, limited social support, functional decline, and cognitive impairment experienced by seniors may necessitate admission to a personal care home (PCH) setting up until the time of their death.2 The ethical problems that arise in the care of dying patients are numerous and complicated.3 The care of dying seniors in PCHs, however, is largely provided by frontline workers such as healthcare aides (HCAs), who usually have little training in palliative care or ethics. Research examining the identification and resolution of ethical problems in care of the dying has been conducted from the perspectives of nurses and physicians in various clinical settings,4 but the voice of HCAs in PCHs is virtually absent from clinical ethics. Given that the inability to satisfactorily resolve ethical issues in clinical practice is associated with feelings of guilt, powerlessness, avoiding contact with patients, failing to provide good physical care, and increased staff turnover,5 an empirical examination of HCAs’ experiences of ethically challenging situations is warranted.
We conducted a phenomenological study to access the lived experience of HCAs (N=12) working in proprietary and nonproprietary care homes as they encountered situations they deemed ethically challenging in providing end-of-life care to dying seniors. The findings reported here explicate: (1) the types of situations that are ethically problematic for HCAs; (2) the meanings they assign to these situations, and (3) the impact such situations have on the provision of end-of-life care.
Original Contribution: Characterizing the Risk in Pediatric Research: An Ethical Examination of the Federal Regulations
Maynard Dyson and Kayhan Parsi, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 212-20.
Abstract: Federal regulations require that the level of risk posed by pediatric research be classified as "minimal," "greater than minimal," or "a minor increase over minimal." Interpretation of the meaning of the levels has produced a significant literature exploring the ethical basis for making these determinations. This article examines the ethical basis of a variety of approaches proposed in the literature for classifying pediatric research risk. These approaches strive to take into account how society decides which risks are routinely accepted for children outside of research. It is concluded that ways of classifying risk should compare research risks to normal risks for children without special disability and take into account the concerns of the research subject’s community.
Original Contribution: Protection of Children in Research: Beyond Pediatric Risk Levels: The Emergence of the Research Subject Advocate
Tomas J. Silber, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 221-3.
Abstract: The author describes the role of the research subject advocate (RSA), inaugurated in 2001, which adds a fourth level of protection for human research subjects.
Original Contribution: Infant Heart Transplantation after Cardiac Death: Ethical and Legal Problems
Michael Potts, Paul A. Byrne, and David W. Evans, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 224-8.
Abstract: The removal of hearts from infants who have been declared dead after very brief periods of apparent circulatory arrest, as reported by Boucek and his colleagues,1 brings into sharp focus the questionable propriety of non-heart-beating organ donation (NHBOD) — or donation after cardio-circulatory death (DCD) — in general. "Controlled DCD," in which there is "planned withdrawal of life-sustaining treatment," and "uncontrolled DCD," in which "DCD occurs after unanticipated cardiac arrest,"2 raise the issues of violation of the dead-donor rule and "treatment" that is oriented toward the end of preserving donor organs, rather than toward helping the donor. These procedures have acquired a measure of acceptance,3 seemingly on the grounds of their potential for increasing the supply of donor organs.4 We believe that this acceptance, in the face of the ethical and legal problems widely represented in the medical literature, suggests that the transplant community has moved too quickly to adopt a morally problematic procedure.5 We hold that these problems are of such fundamental importance that there is urgent need for a fully informed consideration of their consequences for the community and profession.
Original Contribution: Dying But Not Killing: Donation after Cardiac Death Donors and the Recovery of Vital Organs
Armand H. Matheny Antommaria, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 229-31.
Abstract: Michael Potts, Paul A. Byrne, and David W. Evans are critical of donation after cardiac death (DCD).1 Contrary to the authors’ assertion that the removal of vital organs is the proximate cause of death, the eventual fulfillment of the neurological criteria of death is solely dependant on the rate of brain cell death in the absence of circulation. Consistent with the "dead donor rule," DCD is not the cause of death. There are also procedural mechanisms to address the potential conflicts of interest that concern the authors. Rather than being prohibited, DCD may be an ethically justifiable exception to the rule that organ donors must be dead prior to organ recovery.
Original Contribution: Building Esprit de Corps: Learning to Better Navigate between “My” Patient and “Our” Patient
Evan G. DeRenzo and Jack Schwartz, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 232-7.
Abstract: Excellence in the care of hospital patients, particularly those in an intensive care unit, reflects esprit de corps among the care team. Esprit de corps depends on a delicate balance; each clinician must preserve a sense of personal responsibility for "my" patient and yet participate in the collaborative work essential to the care of "our" patient. A harmful imbalance occurs when a physician demands total control of the decision-making process, especially concerning end-of-life treatment options. Although emotional factors may push a physician to claim decision-making exclusivity, compounded by a legal framework that overemphasizes individual responsibility, esprit de corps can be preserved through timely communication among clinicians and a recognition that optimal care for "my" patient requires effective team practice.
Original Contribution: Esprit de Corps: The Possibility for the Best Care a Hospital Can Provide
Norman Quist, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 238-42.
Abstract: What is best for the hospitalized patient? How do we increase the prospects that a patient will receive the best care a hospital can provide, and how is this accomplished? It has been argued that what is best for the patient is to be in the care of highly functioning collaborative teams, teams with certain unique qualities, teams that have esprit de corps. But how do we get there? In furtherance of this discussion, the author, in a Quintilian-like spirit, deliberates about "necessity" and "possibility" in what is best for the hospitalized patient and the challenges these teams must navigate: responsibility, accountability, team relationships, leadership, moral distress, dissent, and personal and professional risk.
Original Contribution: Legal Briefing: Organ Donation and Allocation
Thaddeus Mason Pope, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 243-63.
Abstract: This issue’s "Legal Briefing" column covers legal developments pertaining to organ donation and allocation.1 This topic has been the subject of recent articles in JCE.2 Organ donation and allocation have also recently been the subjects of significant public policy attention. In the past several months, legislatures and regulatory agencies across the United States and across the world have changed, or considered changing, the methods for procuring and distributing human organs for transplantation.3
Currently, in the U.S., more than 100,000 persons are waiting for organ transplantation.4 In China, more than 1.5 million people are waiting.5 Given the chronic shortage of available organs (especially kidneys and livers) relative to demand, the primary focus of most legal developments has been on increasing the rate of donation. These and related developments are usefully divided into the following 12 topical categories:
1. Revised Uniform Anatomical Gift Act
2. Presumed Consent and Opt-Out
3. Mandated Choice
4. Donation after Cardiac Death
5. Payment and Compensation
6. Donation by Prisoners
7. Donor Registries
8. Public Education
9. Other Procurement Initiatives
10. Lawsuits and Liability
11. Trafficking and Tourism
12. Allocation and Distribution
Original Contribution: The Ambiguous Effects of Tort Law on Bioethics: The Case of Doctor-Patient Communication
Dena S. Davis, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 264-71.
Abstract: Tort law is an important tool in enforcing a minimal level of good behavior. But what is appropriate for law is not necessarily appropriate for ethics or for norms of professional practice.
Letter: Business Interests versus Informed Consent
Duraiyah Thangathurai and Peter Roffey, The Journal of Clinical Ethics 21, no. 3 (Fall 2010): 271.
Abstract: Risks such as the length of surgery and complications related to instrumentation should be disclosed to the patient.
The Journal of Clinical Ethics, Summer 2010, volume 21, number 2
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.
The Journal of Clinical Ethics, Spring 2010, volume 21, number 1
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.
Original Contribution: Toward Competency-Based Certification of Clinical Ethics Consultants: A Four-Step Process
Martin L. Smith, Richard R. Sharp, Kathryn L. Weise, and Eric Kodish,
The Journal of Clinical Ethics 21, no. 1 (Spring 2010): 14-22.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.
Abstract: In a pandemic situation, resources in intensive care units may be stretched to the breaking point, and critical care triage may become necessary. In such a situation, I argue that a patient’s combined vulnerability to illness and social disadvantage should be a justification for giving that patient some priority for critical care. In this article I present an example of a critical care triage protocol that recognizes the moral relevance of vulnerability to illness and social disadvantage, from the Canadian province of Newfoundland and Labrador.
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. Statutorily mandated abortion disclosures
4. Statutorily mandated end-of-life counseling
5. Other statutorily 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.