Ethics Roundtable: Annotated Bibliography

Topics in Ethics for Audiologists and Speech-Language Pathologists

Truth-Telling

Girgis, A & Sanson-Fisher, RW. Breaking bad news: Consensus guidelines for medical practitioners. Journal of Clinical Oncology. 1995; 13(9): 2449-2456.

Position paper prepared by New South Wales Cancer Council Education & Research Program team. Conveying bad news regarding an individual's state of health or prognosis is an arduous task for many in the health professions. The authors include a thorough review of the literature and examine three models of disclosure: nondisclosure, full disclosure, and individual disclosure. The guideline statement covers the advantages and disadvantages of each approach to delivering bad news. In addition, these authors present 13 principles by which to abide when breaking bad news. These principles, implemented by various health care facilities in Australia, are based on an individual disclosure model that includes elements of trust, patience, and empathy with an open comprehensible exchange of information, hopeful yet realistic treatment goals, referral to support services, and concise documentation. These authors state that although individualized disclosure is the model of choice for many practitioners, further study is necessary in order to compose a universal set of principles for breaking bad news. The ethics pertaining to truth telling and disclosure has changed over the years and existing methods seem inadequate. Appropriate delivery of information is crucial given that professional recommendations have a significant impact on an individual's decision-making regarding his or her health care and may have ramifications for patients' quality of life.

Herbert, P.C., Hoffmaster, B., Glass, K.C., Singer, P.A. (1997). Bioethics for clinicians: 7. Truth telling. Canadian Medical Association Journal, 156 (2): 225-228.

This article addresses issues surrounding truth telling to patients and reviews (1) what truth telling means, (2) why truth telling is important from a legal, ethical, and policy perspectives, and (3) how physicians should approach truth telling in their practices. The article provides a discussion of a number of factors (cultural, patient outcome, and patient right-to-know) that should be considered when a physician is deciding on what information should be shared with a given patient. A case is provided to demonstrate how these issues relate to patient care.

Lederberg, M. (1997). The psychological repercussions of New York State's do not resuscitate law: An American experience with mandated "truth-telling." Annals New York Academy of Sciences, 809: 223-236.

The author reviews the pressures and events that led to the passage of the New York State's Do-Not-Resuscitate Law in 1988 and the repercussions that occurred as a result. The law establishes a legal presumption for CPR unless such intervention is explicitly refused by the patient or family in a formal discussion in the presence of witnesses. The new law substantially increased the number of intubated patients in the special care units of New York hospitals. A myriad of psychological reactions on the part of medical staff as well as patients and their families also resulted. These psychological reactions are discussed, as well as how these circumstances laid the foundation for a number of positive outcomes (e.g., greater education of the public about the use of advance directives, the selection of health proxies, and increased training for medical staff).

Surbone, A. (1997). Information, truth, and communication: For an interpretation of truth-telling practices throughout the world. Annals New York Academy of Sciences, 809: 7-16.

This article defines ethics in medicine as the dimension in which both the physician and the patient find themselves "at home." The author considers truth-telling within the larger framework of making the truth--that is, the co-creation of a truth by physician and patient that evolves as a matter of discovery, creating and recreating the truth, and within and outside the field of medicine as well as the disease entity. The author discusses several factors that contribute to the evolution of the truth. These include (1) objective information--the nature of the disease, its likely course, the likely side effects, and the likely prognosis, (2) subjective dimensions, including the patient's perception of the disease, and (3) contextual dimensions that vary according to the historical, cultural, and religious backgrounds of the patient and the physician. The author stresses that the sharing of information and the evolution of truth can only occur through communication. Finally, the article reviews some of the obstacles that the physician may encounter when attempting to communicate with his or her patient.

Thomasma, D.C. (1994). Telling the truth to patients: A clinical ethics exploration. Cambridge Quarterly of Healthcare Ethics, 3: 375-382.

This article begins with an overview of the reasons why truth is important to communication in general. This is followed by a discussion of various types of truth (i.e., direct truth, factual truth, personal truth, and interpretative or hermeneutical truth) and the reasons why truth is only a relative value. The author discusses five different instances within the clinical setting when the requirement for truth or full disclosure may be viewed as a secondary good as other primary values may take precedence over the truth in these cases.

Mistakes

Hilfiker, D. (1984). Facing our mistakes. New England Journal of Medicine, 310(2): 118-122.

The implications of one's decisions and errors as a physician are discussed in this personal account of a practitioner in a small town in Minnesota. This author brings to light issues of coping with one's professional decisions and the impact those decisions have on patients and their families. Hilfiker suggests that physicians are trained not to make mistakes. Errors are rarely admitted or discussed with patients or amongst colleagues. Medical training offers no forum for dealing with one's mistakes as a physician in a healthy, open manner. This is unfortunate, considering the potential for making a mistake is present with each and every patient. Hilfiker states that given the complexity of the human body and patient care, it may be difficult to determine whether it was your professional recommendation that lead to a bad outcome or someone else's. As such, physicians may only deal with the decisions they know or feel to be directly their responsibility. The inability for physicians to openly admit their mistakes coupled with the implications of those mistakes present a rigid and heavy burden on physicians. Hilfiker proposes a number of solutions for physicians to approach errors in medical care.

Confidentiality

Dodek, D. Y and Dodek, A. (1997) From Hippocrates to facimile. Canadian Medical Association Journal. 156 (6): 847-852.

The authors provide a thorough discussion and literature review of confidentiality of patient records and information including their use in retrospective research. Their coverage of how team management, computer processing and fax transmission create the potential for ethical dilemmas are a must-read for every clinician.

Kleinman, I., Baylis, F., Rodgers, S., Singer, P. (1997). Bioethics for clinicians: 8. Confidentiality. Canadian Medical Association Journal, 156 (4): 521-524.

This article addresses the conflicts that occur between a patient's right to confidentiality and the ethical and legal imperatives for disclosure. The importance of confidentiality as a foundation for trust in the physician-patient relationship is discussed, as are the legal, professional, and ethical bases for confidentiality. The authors outline the potential conditions for disclosure of confidential information, including disclosure mandated by state or federal legislation as well as the "duty to warn" if an individual's condition or disease is likely to result in harm either to the individual himself or to others. Three cases are used to demonstrate the various factors that should be considered when determining if disclosure is necessary.

Siegler, M. (1982) Confidentiality in medicine: A decrepit concept. New England Journal of Medicine. 307:1518-1521.

An insightful overview of the barriers to traditional medical confidentiality. Siegler emphasizes the team approach to managing patients as a particular barrier in academic medical settings. This article raises questions about the necessary dynamism of certain principles in most codes of ethics.

Ubel, PA, Zell, M.M., Miller, D.J., Fischer, G.S., Peters-Stefani, D., Arnold, R.M. (1995) Elevator talk: observational study of inappropriate comments in a public space. American Journal of Medicine. 99:190-194.

In 1982, Siegler suggested that the medical confidentiality is compromised in numerous places including elevators, cafeterias, and at cocktail parties - 13 years elapsed before this assertion was evaluated. This article is a somewhat shocking report of samples of elevator conversations in five hospitals in the Pittsburgh area. The findings support the contention that breaches of patient confidentiality do occur in elevators. Other types of inappropriate statements and conversations are also reported.

Decision-Making Capacity, Competence, and Informed Consent

Appelbaum, P.S., & Grisso, T. (1988). Assessing patients' capacities to consent to treatment. New England Journal of Medicine, 319(25): 1635-1638.

Competency is a legal concept that can only be truly decided upon in a court of law. The clinical assessment of an individual's capabilities to make their own decisions regarding healthcare can often be difficult. This article presents several basic and commonly accepted skills that adults in healthcare settings must possess in order to demonstrate decision-making capacity. The components of decision-making capacity include: 1) the ability to communicate choices, 2) the ability to understand relevant information, 3) the ability to appreciate the situation and its consequences, and 4) the ability to manipulate information rationally. This article also presents various tasks by which to assess these related skills. These tasks should be carried out in the most optimal environment to help ensure the patient's best and most consistent performance. These authors also emphasize the role of decision-making capacity in achieving informed consent. The examiner's role is simply to gather accurate, relevant information and decide whether legal intervention is necessary. This decision should be approached cautiously. The authors stress tha examiners should exhaust all tests at their disposal and within their scope of practice before moving on to the legal system for formal determinations of competency.

Finucane, P, Myser, C & Ticehurst, S. "Is she fit to sign, doctor?"- Practical ethical issues in assessing the competence of elderly patients. Medical Journal of Australia. 1993: 159: 400-403.

The article highlights the sliding scale of competence depending on the person's ability to make the decision at hand. The authors give a series of suggestions for assessing decisional capacity and for maximizing patients' participation in decision-making. The legal information is pertinent to the U.S., although written for an Australian audience.

Lidz, C. W. , Meisel, A., Osterweis, M., Holden, J. L., Marx, J. H. & Munetz, M. R. (1983). Barriers to informed consent. Annals of Internal Medicine, 99: 539 - 543.

Using participant observation methods, the authors studied the application of the legal doctrine of informed consent in several hospital settings. The authors describe barriers to patient participation in decision making regarding their own care. Barriers include organizational factors, patient inexperience, the complexity of the decisions being made, and the patients' faith in their own physicians. The full consideration of these obstacles to the implementation of legal informed consent is well-done and goes far beyond typical explanations of lack of cooperation on the part of medical staff and ignorance on the part of the patients.

Steffen, G. E. & Franklin, C. (1985). Commentaries: Who speaks for the patient with locked-in syndrome? Hastings Center Report, Dec., 13 - 15.

These article uses a case and two commentaries that offer opposing reflections about a man who had "locked-in" syndrome resulting from a brainstem stroke. He could neither speak nor move except for opening and closing his eyes. The patient's prognosis was considered zero for even minimal recovery of function by two neurologists. Questions posed include whether or not the patient is competent to consent or to refuse treatment; how the guardian could justify decisions made regarding life-sustaining treatment; and how the physicians should proceed in this case. The commentaries are thoughtful and carefully reasoned reflections on how to arrive at defensible positions in making these medical decisions. The Pro-Con format is well-balanced and thought provoking and presents a variety of factors that need to be considered in making these difficult decisions.

Patients Who Lack Decision-Making Capacity or Competence

Bourgeois, M.S. (1991) Communication Treatment for Adults with Adults with Dementia, Journal of Speech & Hearing Research, 14: 831-844.

An exhaustive review of the literature (over 100 articles) was conducted in order to examine intervention studies with patients suffering from communication disorders secondary to dementia. Only a short segment dealt with ethical issues regarding providing treatment to patients with degenerative disorders. It was noted that speech-language pathologists may be reluctant to treat individuals when the potential for gain is questionable. Often, family members do not provide active therapeutic interventions because they believe that these efforts are not productive. The authors suggest that more research is needed to demonstrate positive effects of intervention so that professionals and family members will be less reluctant to provide intervention. Such cooperative efforts should result in the ethical and humane treatment of patients with dementia.

Ethical Issues for Neonates, Children, and Adolescents

Sigman, G.S., Kraut, J., La Puma, J. (1993). Disclosure of a diagnosis to children and adolescents when parents object: A clinical ethics analysis. American Journal of Disabilities in Children, 147 (7): 764-768.

This article addresses the dilemma raised for physicians and other clinicians when parents request nondisclosure of a diagnosis to their child. The authors use a case (a patient with cystic fibrosis) to examine the issues and conflicts which arise when parents request such nondisclosure. Specific clinical factors that should be considered when facing such an ethical dilemma are identified and discussed. These include: (1) physician factors, (2) disease-specific factors, (3) patient factors, and (4) family factors. The authors stress that decisions regarding disclosure/nondisclosure are context specific and, as such, should be re-examined as the clinical situation changes.

Weir, R.F., Peters, C. (1997). Affirming the decisions adolescents make about life and death. Hastings Center Report, 27 (6): 29-40.

This article discusses changes in the attitudes of parents, legal experts, and medical professionals toward the capacity and rights of adolescents with mature decision-making abilities to participate in major health care decisions and to give informed consent in both clinical and research settings. The authors review current state statues that govern the ability of minors to participate in health care decisions. They propose a set of practice guidelines for medical professionals and researchers who deal with adolescent patients and subjects.

Health Law in the Literature

Davis, Dena S. Legal Trends in Bioethics (review), Journal of Clinical Ethics. 1996: 7(2): 187-90

This article reviews current legislative and judicial action in the areas of abortion, AIDS, death and dying, payments to Christian Science practitioners, reproductive issues and torts.

Schneider, C.E. (1994). Bioethics In the language of the law. Hastings Center Report. 24(4): 22.

The author argues that law is a language of social regulation. But, as a vehicle for discussing morally consequential issues like those in bioethical disputes, that legal language is limited and often inadequate.

Ethics Education

Paier, G., Miller, P. (1991). The Development of Ethical Thought in Long-Term Care. J. Gerontol. Nursing. 17(10): 28-31.

This is a description of a staff education program about ethical principles and how they influence decision-making in a long-term care facility. This educational program helped to define patients' rights and the caregivers' responsibilities.

Care at the End of Life

Bone, R. C. (1996). Lemonade: The Last Refreshing Taste. JAMA. 276(15): 1216.

A physician with a terminal disease offers peace to terminally ill patients in the hospital through a "physician-to-patient" sharing of feelings and thoughts. He states that physicians and other clinicians must learn to participate in human-to-human contact. He has found that all patients want help and hope even if at peace with their imminent death.

Byock, I. (1996). The Nature of Suffering and the Nature of Opportunity at the End of Life. Clinics in Geriatric Medicine 12 (2): 237-252.

A philosophic article on the process and nature of dying including the stages of preparation for death, the role of a life review, cultural and religious differences extant in the perception of suffering, and the role of suffering in dying. Byock states:" The touchstone of dying well -the sense of growing in the midst of dying- is for the experience to be important, valuable and meaningful for the person and his or her family." The touchstone of participation in dying well is for the clinician to be present, steadfastly providing care and support.

Health Care Reimbursement/ Managed Care

Friedman, E. (1997). Managed Care, Rationing, and Quality: A Tangled Relationship. Health Affairs.16 (3): 172-182.

"A profound redistribution of power and money" are ensuing as a result of a "massive increase in managed care enrollment." Regulatory governmental participation has been minimal even though the government spends huge sums on health. Critics' fears center on issues of quality, access for all, rationing, and fairness to all sectors of society (issues of social justice and equity). The author indicates that empirical information not patient satisfaction surveys are needed to evaluate patient care. Explanations to the public about managed care must be scrupulously honest and clearly communicated for acceptance.

Research Ethics

Rothman, D.J. (1982). Were Tuskegee & Willowbrook 'studies in nature'? Hastings Center Report, April, 5-7.

The author reviews two research studies that were carried out in the U.S. --the Tuskegee syphilis experiment and the Willowbrook hepatitis study. The author poses a number of questions about which research designs should be considered permissible when researchers want to observe the natural course of a disease, if that study requires that subjects be deprived of health care interventions. He raises serious ethical questions about these investigations and argues that the researchers in both cases based their natural experiments upon social rather than biological conditions and that neither ethics nor science gained much from observing the conditions of social deprivation in these investigations.

Weir, R.F., Peters, C. (1997). Affirming the decisions adolescents make about life and death. Hastings Center Report, 27 (6): 29-40.

This article discusses changes in the attitudes of parents, legal experts, and medical professionals toward the capacity and rights of adolescents with mature decision-making abilities to participate in major health care decisions and to give informed consent in both clinical and research settings. The authors review current state statues that govern the ability of minors to participate in health care decisions. They propose a set of practice guidelines for medical professionals and researchers who deal with adolescent patients and subjects.