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19 - Ethics in and for the organization
- Edited by D. Micah Hester, Toby Schonfeld, Emory University, Atlanta
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- Guidance for Healthcare Ethics Committees
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- 05 August 2012
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- 02 August 2012, pp 147-154
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Summary
Objectives
Recognize the HEC as one contributor to the ethical operation of the healthcare organization (HCO).
Identify the ethical implications of the structures, processes, and systems within which the HEC functions.
Suggest ways in which the traditional activities of the HEC contribute to the wider ethical enterprise of the HCO.
Propose additional tasks suitable for a proactive HEC.
Case 1: Hard choices
Nurse Elwood, a member of the St. Nowhere ethics committee, is nurse manager of the PICU, and is overseeing the discharge of Jimmy G, a ventilator-dependent 5-year-old. As the family is about to leave the unit, Jimmy’s mother asks the nurse a question that makes it clear that the family has not been adequately trained on the technology that will allow Jimmy to be maintained at home. The distressed discharging nurse comes to Elwood with a dilemma: she must choose between the welfare of her present patient, keeping him in the unit while further training the parents, and that of the new admission scheduled for Jimmy’s room later that day.
At the next committee meeting, Elwood describes the situation and expresses her concern at the difficulty the team had having to decide between two patients in need of the same bed. Further investigation reveals a pattern of prolonged ICU stays, resulting in decreased access to ICU care for other patients; and several other cases when a necessary delay in discharge disrupted planned resource allocation for the unit.
10.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Book:
- Ethical Dilemmas in Pediatrics
- Published online:
- 18 August 2009
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- 10 June 2005, pp 236-238
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Summary
Coordination between services
The structural organization of the contemporary hospital can constitute an obstacle in its own right to effective communication with patients and their parents about the plan of care in complex medical cases. Intensive care units providing technically sophisticated support are typically staffed with specialists in critical care, but the patients whose illnesses have reached a critical point can be referred to those services from a variety of different specialties – transplant, cardiology, pulmonary medicine, oncology. When the attending physician on the referring service and the ICU attending have different priorities, opinions, or treatments for the same patient, whose opinion governs care? This is not a question that should be determined by power within the institution or hierarchy of medical specialties, but realistically, there are few areas of human interaction in which relative power does not play a role. Coordination, communication, and cooperation between services is a problem of organizational structure, too important to be left prey to the personalities and varying skills of individuals.
The problem of coordination and communication arises on many levels. In many hospitals, the physicians in training, the residents, have more contact with individual patients than their supervisors, the physicians who are training them in their specialty, but quite rationally might fear to challenge their decisions. The various professional groups among clinicians, united by a Hippocratic commitment to the well-being of their patients, nonetheless may have differing priorities, reflecting their different professional ethics.
7.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 166-169
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Summary
Palliative care
Palliative care has been defined as care that seeks to prevent, relieve, reduce, or soothe the symptoms produced by serious medical conditions or their treatment, and to maintain patients' quality of life. Ideally it is a part of the treatment plan from diagnosis on, but if it is considered an alternative rather than supplement to curative medical interventions and identified only with end-of-life treatment it can pose ethical dilemmas to physicians and families. If it is necessary to accept that death is imminent for a child with a life-threatening or chronic illness, introducing palliative care might be seen as a decision to “abandon hope” and thus may be resisted, both by families and by caregivers who have an emotional stake in the success of their treatment, risking undertreatment of pain and inadequate communication and discharge planning.
In the USA this bifurcation is resisted by considering palliative care to include end-of-life care planning and inpatient or outpatient hospice care, as well as pain management, but there are reimbursement obstacles as well as conceptual ones that make it difficult to more tightly integrate palliative care with mainstream medical therapies. As a result, palliative care is more likely to be a focus in children with terminal illnesses than in children facing chronic or life-threatening illness. It is to be hoped that the growing presence of multidisciplinary palliative care programs in US hospitals, as well as increasing emphasis on pain control and end-of-life care in medical education, will eventually mitigate this compartmentalization and bring the USA more in line with standard practices elsewhere.
Contents
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp v-vii
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Part IV - Institutional impediments to ethical action
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 217-220
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Summary
Institutional arrangements can impede or facilitate ethically excellent medical care. As clinical ethics matures, increasing attention is being paid to the institutional contexts in which health care is provided, and the ethical impact of recent changes in methods of care delivery. The growth of this new area of bioethical focus is adumbrated in the third of the articles in this section. Thinking about ethics in organizations, as well as in the interactions between individuals, can take various forms. Clinical ethics problems can be caused or exacerbated by structural arrangements within institutions. Recurrence of similar clinical ethics problems can sometimes be prevented by institutional changes in staffing, accountability, or interventions. Further, many clinical ethics issues, such as confidentiality, informed consent, or disclosure and truth telling, have institutional analogues which must be addressed by different strategies than their individual-level counterparts. Institutional structures or routines can cause ethical problems in particular cases, and sources of ethical distress which are out of the control of individual caregivers can sometimes be ameliorated by scrupulous attention to institutional processes. Heightened sensitivity to ethical issues in clinical practice opens the door to considering ways in which the organizations within which clinicians practice can improve their ethical climate.
The three cases in this part call attention, in different ways, to structural sources of ethical perplexities. In one case, the structure of medical practice causes difficulties that thoughtful structural interventions can ameliorate; in another an institutional component, the ethics committee, carries out its function in a way that impedes, rather than facilitates, the ethical climate of an institutional unit.
Preface
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp xi-xii
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Summary
The editors would like to offer their thanks to the authors of the chapters in this book for their thoughtful contributions. Inheritors of a long tradition of silent service, they have been willing to add their voices to an ongoing dialogue between providers of and observers of medical care in the late twentieth and early twenty-first centuries, for which we are grateful.
The children and the families for whom we have had the privilege of caring during their various illnesses are honored as well in these pages, though the details of the cases have been changed by the authors to prevent any identification of particular patients.
Although it is the physician's voice that is most often heard in this volume, we gratefully acknowledge that the work of the hospital involves many helping professions, including nurses, therapists, chaplains, social workers, and clinical ethicists.
The areas of pediatric medicine and of medical ethics have been impoverished by the loss of William A. Silverman, who died as this volume was in preparation.
The book has been greatly helped by the thoughtful comments of anonymous reviewers and the scrupulous and authoritative editorial work of Hugh Brazier, and is dedicated to our families, who support our work, and to the children.
5.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 131-134
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Summary
PVS
Intense debate persists about the terminology, clinical diagnosis, and criteria for decision making for patients in vegetative states. The acronym PVS technically refers to persistent vegetative state, but as noted by our authors “persistent” vegetative state typically becomes “permanent” vegetative state after a period of time, and diagnosis of the state cannot be absolutely certain. Various court cases in the USA have established parameters for bases on which to consider forgoing life-sustaining treatment and who has the moral (or legal) standing to make such decisions, but it is not the case in the USA, as it is in some other countries, that all such decisions must undergo judicial review. Support for patients in PVS involves patients, their families and friends, the organizations providing the care, the organizations funding the care, and the individual care providers, and while some cases proceed with little disagreement, as in this case, there is considerable opportunity for disagreement and ethical quandary.
There has been a spate of literature discussing the “minimally conscious” state, a description of patients for whom the criteria of PVS are not met. The medical discussion is bedeviled by the difficulty of drawing a bright line in a continuum of conscious states, and the ethical discussion by the inevitable fact that an argument for treating (or withdrawing) at any point on that continuum can equally well justify the same course of action for the case next to it on that continuum – a conundrum sometimes called the “slippery slope.”
Part II - Medical futility
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 85-88
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Summary
“Futility” is one of the most controversial issues facing contemporary health care – both in theory and in application. The three cases in this section illustrate the difficulty faced in theory and practice.
The term itself can be confusing. The futility of a particular treatment may be evident in either quantitative or qualitative terms. That is, futility may refer to an improbability or unlikelihood of an event happening, an expression that is quasi-numeric, or to the quality of the event that treatment would produce. In the absence of specific objective criteria consistently applied across different diagnoses and settings, subjective judgments about what is appropriate in a specific case can and do clash. A treatment judged “futile” from one perspective is liable to be termed “desirable” or “necessary” by another participant or affected party: “You may think it is futile, but it does not seem futile to me.” Such conflicting reactions to a situation may reflect different formulations of the goals of treatment. One party may consider an intervention “futile” which only postpones death; another may find an extended time to resolve emotional or family issues priceless. The reliability of factual information cannot settle conflicts arising from these different value positions.
Even in cases where considerable outcomes research has generated probabilistic data about the likelihood of positive results for life-sustaining treatments such as cardiopulmonary resuscitation or mechanical ventilation under some medical conditions, the chance, however minimal, of postponing death can be of great psychological value to grieving parents.
List of contributors
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp viii-x
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Ethical Dilemmas in Pediatrics
- Cases and Commentaries
- Edited by Lorry R. Frankel, Amnon Goldworth, Mary V. Rorty, William A. Silverman
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- Published online:
- 18 August 2009
- Print publication:
- 10 June 2005
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Children in precarious health present particular problems for healthcare professionals because of their intimate relation to their family, and because of the family's need to provide major long-term source of support and to be actively involved in the decisions about their children's care. This collection of cases and commentaries in pediatrics highlights the difficult ethical dilemmas that can arise during high-tech hospital care of children in precarious circumstances. It serves as a teaching tool for clinical ethics and as an introduction for medical students and residents. Clinical cases are described in detail by the physicians involved, who focus on the ethical issues arising during treatment. Each case is then commented on in detail by a philosopher or other bioethicist. It thus serves well as an introduction to contemporary clinical bioethics, but with a firm grounding in the practicalities of real-life pediatric care in the hospital setting.
Frontmatter
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp i-iv
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4.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 108-112
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Summary
Futility
Despite wide recognition that it cannot be meaningfully and univocally defined, the term “futility” is sometimes invoked in medical cases where there is reason to doubt (1) the medical efficacy of the treatment (“it won't work”), or (2) whether it will improve quality of life (“it's not worth it”). Its ordinary-language connotations make it very difficult to convert the term into a technical term with a specific and limited meaning, but since its first introduction in 1987 in connection with CPR it has been used with increasing frequency as a shorthand for a variety of scientific and subjective reasons for not offering, or for suggesting withdrawal of, medical therapies.
The court cases related to futility are of two kinds. In the first kind, if the family or surrogates wish to withhold or withdraw life-sustaining treatments, they may do so (with evidence of patient preferences, as in the Quinlan case of 1976), including withdrawal of medical nutrition and hydration (if the state allows it, as in the Cruzan case of 1990). In the other kind of case, surrogates wish to institute or continue care that the team or facility considers ineffective or inadvisable. If the team are unable to reconcile themselves to offering life-sustaining treatment, they must transfer the patient to an alternative physician or facility which will provide the care (as happened with Baby Ryan Nguyen in 1994) or, if that facility is not equipped for emergency care, must continue to provide the care themselves (as occurred in the Baby K case).
Index
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 296-303
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References
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 282-295
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8.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 185-189
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Summary
Transplantation
Like the child in Dr. Burne's case (Chapter 7), the infant in Dr. Chin's case suffered from hypoplastic left heart syndrome. The main indication for cardiac transplantation in children under one year of age is congenital heart disease in more than 75% of those infants, and hypoplastic heart is at the top of the list. Overall survival in the pediatric age group after five years is approximately 65%; however, patients receiving transplants at younger than one year of age have a slightly lower survival rate (62%).
Some ethical dilemmas associated with donors and procurement of organs were briefly visited in Chapter 4. Some additional dilemmas associated with recipients and access to organs are raised in this chapter. The scarcity of organs in relation to the number of possible recipients involves considerations of distributive justice. Some of the most complex issues in transplantation ethics surround the distribution and allocation of organs that become available. The competing and sometimes incompatible principles driving allocation are fairness (allowing equal access to transplantation to as many as possible), efficiency (getting the most and best use possible out of the scarce resource), and need (allocating the organs on the basis of medical urgency). From the standpoint of the best utilization of a scarce resource, an available organ might best be transplanted to the candidate who will derive the greatest benefit, in terms such as number of life years extended or extent to which function is improved.
12.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 18 August 2009
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- 10 June 2005, pp 277-281
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Summary
Information and decision making
In an ideal world, in which each patient can assess the quality of medical care and the MCO can determine what maximum profit is, one could determine the Pareto optimal point, i.e., the point of compromise achieved between the competing aims of the patient and MCO in which each can veto the other.
In the real world, quality assessments of medical care by the patient (and for that matter by other individuals or groups of individuals, whether they be part of the healthcare system or not) are fragmented and distorted by economic concerns (“can I afford it?” or “can I reduce costs?”). In addition, it is not at all clear whether the concept of maximum profit has a determinate meaning, or an appropriate application, in the healthcare arena. Furthermore, the patient does not have decision-making powers that are equal to that of the MCO. He or she may opt out of a particular MCO but cannot directly bargain with the MCO for better terms, however these are understood. Indeed, the marketplace itself places powerful constraints on the competing demands of both the patient and the MCO. Thus, the point of compromise is not likely to be the Pareto optimal point.
Conflicts of interest and conflicts of commitment
A complex and difficult feature of professionalism is the level of autonomy of the practitioner.
3.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 10 June 2005, pp 80-84
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Summary
Munchausen syndrome by proxy (MSBP)
Munchausen syndrome, poetically named in 1951 after German fables of the fictitious Baron Munchausen, denotes factitious or imaginary illnesses intentionally feigned in order to gain access to medical care. The label of Munchausen syndrome by proxy entered the literature in 1977. Confusion about whether it is a diagnosis of the perpetrator or the victim has been recently resolved by distinguishing between “pediatric condition falsification” (PCF), a diagnosis of the victim, some cases of which have other causes, and “factitious disorder by proxy” (FDP), a diagnostic category for the caretaker, referring to fabricating or inducing illnesses in another person in order to assume the sick role by proxy. MSBP is then characterized as the disorder that includes a diagnosis in both the child and the caretaker.
One reason for wishing to abandon the terminology of MSBP is the recognition that a caretaker may be led to fabricate or induce illness in another by a number of different psychiatric disorders, not only through projected Munchausen syndrome. As there is no single psychological profile and the label makes assumptions about the parent's mental state and motivation, the label is gradually falling out of use in clinical contexts, although still common in the popular press and imagination. Further, it appears to be a diagnosis of a parent rather than of the true patient, the child.
11.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 10 June 2005, pp 253-256
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Summary
Ethics committees and case consultation
The nation's experience with “Baby Doe” laws in the 1980s led to a reaction against deciding problematic ethical cases through the courts. Institutional ethics committees established to deal with particular clinical areas such as dialysis allocation or treatment of newborns served as a model for clinical ethics committees, intended to serve as an intermediary between individual physician decisions and extramural judicial interventions in ethically troubling cases. By 1993, the Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) began to require all hospitals of more than 200 beds to have ethics committees with responsibility for education, policy formation, and case consultation. No specific procedures are required, but the multidisciplinary committee described in this case has become widely accepted as standard. Not all committees are equally effective within their institutions, and attention to supporting the role and processes of those committees is an important organizational concern.
The Society for Bioethics Consultation (now the American Society of Bioethics and Humanities) has developed guidelines for clinical ethics consultation. They emphasize the importance of working to ensure that all involved parties with a moral stake in the outcome of a given case have a chance to have their voices heard, and recommend documentation of the results of all consults.
Authority and responsibility
The traditional and legal authority of physicians to determine medical care has long been mediated by nurses and other allied health professionals who are given the responsibility of carrying out their decisions.
Part III - Life by any means
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Ethical Dilemmas in Pediatrics
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- 10 June 2005, pp 153-156
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Summary
Treatment decisions in complex cases depend on a variety of factors: parental (or patient) wishes, informed medical judgment, and the predictions of the physicians about the results of any given treatment. But contextual factors, such as what treatments are available or feasible, are crucial as well. In the three cases in this part, only very complex, invasive, and high-risk interventions can postpone the death of a pediatric patient. The availability of such treatments influences the goals of medical treatment of this patient in this situation. In different ways, each of the authors meditates on the impact that the very availability of such options has on treatment decisions. Two of the three cases in this section involve transplantation, and provide useful insights into the current success rates of various organ transplantations, as well as sensitive discussions of the various factors taken into consideration in the allocation of organs.
The stage is set in Chapter 7 by an English physician, Robert Burne, who introduces William, the sixth of eight children. After what appeared to be a normal birth, William was discovered to have a complicated form of congenital heart disease. His hypoplastic heart was surgically treated, and his parents were informed of his poor prognosis and the likelihood of his developing problems leading to heart failure in his early adulthood. His condition worsened at the age of two following a major stroke, and when he was five his shunt was modified to halt progressive cyanosis.
2.3 - Topical discussion
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- By Lorry R. Frankel, M.D. Department of Pediatrics, Division of Gastroenterology, Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Amnon Goldworth, Ph.D., Senior Medical Ethicist Lucile Packard Children's Hospital, Palo Alto, California 94304, USA, Mary V. Rorty, Ph.D. Stanford University Center for Biomedical Ethics, 701 Welch Road, Suite 1105, Palo Alto, California 94304, USA, William A. Silverman, M.D., Professor of Pediatrics (retired) Columbia University College of Physicians & Surgeons, New York 10032, USA
- Edited by Lorry R. Frankel, Stanford University, California, Amnon Goldworth, Stanford University, California, Mary V. Rorty, Stanford University, California, William A. Silverman, Columbia University, New York
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- Book:
- Ethical Dilemmas in Pediatrics
- Published online:
- 18 August 2009
- Print publication:
- 10 June 2005, pp 52-54
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- Chapter
- Export citation
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Summary
The paradoxical neonate
The treatment of the extremely low-birth-weight baby, as in this case, is as challenging ethically as it is medically. A fragile baby able to fit in the palm of a hand can have remarkable reparative and adaptive potential, but short-term (and long-term) morbidity is unknowable. The parameter of “viability” is itself a moving target: it shifts downward with new technologies or treatment modalities, and varies among institutions as well as among infants. The difference of one week of gestational development can, as in this case, alter expectations for the medical course of a newborn.
For infants born at a gestational age of 26 or more weeks, or weighing more than 800 g, treatment is the standard of care. There is some consensus that for an infant of less than 23 weeks or 500 g at birth, the presumption should be against resuscitation. This recommendation, based on empirical results in such cases, is like the writing on ancient mariner's maps warning “here be dragons.” It is all very well to be told not to go there – but, as in this case, you may find yourself there anyway.
Acting for the best in the face of uncertainty
Despite the availability of statistical compilations of complications of prematurity, the long-term results of any short-term intervention can be unpredictable for any given infant. For the extremely low-birth-weight baby, there is, in addition, a vulnerability that is based on the fact that the neonate is uniquely individual and resistant to classification.