Forgoing life-sustaining treatment: limits to the consensus. Part 2

While substantial progress has been made in reaching a moral and policy consensus regarding forgoing life-sustaining treatment, several holes exist in that consensus where more public discussion and moral analysis is needed. First, among patients who have not been found to be legally incompetent there is controversy over whether certain treatments can be refused. Controversies also remain over damages for treatment without consent, limits based on third-party interests and the ethical integrity of the medical profession, and cases where it cannot be agreed whether the patient is competent. Even greater dispute exists over care of incompetent patients. Perhaps the greatest gap in the consensus arises over limits to the use of the best interests standard. This article proposes replacing it with a "reasonableness standard" that takes into account disputes about what is literally the best for the patient and conflicts of interest between the patient and others.     

Procuring organs from a non-heart-beating cadaver: a case report

Organ transplantation is an accepted therapy for major organ failure, but it depends on the availability of viable organs. Most organs transplanted in the U.S. come from either "brain-dead" or living related donors. Recently organ procurement from patients pronounced dead using cardiopulmonary criteria, so-called "non-heart-beating cadaver donors" (NHBCDs), has been reconsidered. In May 1992, the University of Pittsburgh Medical Center (UPMC) enacted a new, complicated policy for procuring organs from NHBCDs after the elective removal of life support. Seventeen months later only one patient has become a NHBCD. This article describes her case and the results of interviews with the health care team and the patient's family. The case and interviews are discussed in relation to several of the ethical concerns previously raised about the policy, including potential conflicts of interest, the definition of cardiopulmonary death, and a possible net decrease in organ donation. The conclusion is reached that organ procurement from non-heart-beating cadavers is feasible and may be desirable both for the patient's family and the health care providers.     

Adolescent acting out when a parent has cancer

The psychological stresses which cancer exerts on a family system can be immense, both situationally and developmentally. These stresses can be unusually intense for the adolescent who has a parent ill with cancer. They can impact upon the adolescent in overt ways, such as increased household or child care duties, or in more covert ways such as in subtle role shifts in the relationship between the adolescent and both the ill and the well parent. The covert role shifts are especially thought to promote acting out and potential decompensation on the part of the adolescent. The acting out can have system-defecting and sytem-unifying properties, with the decompensation secondary to unbearable role shifts that reintensify the adolescent emotional contact with parents in the midst of a developmental process of separation. General clinical intervention points are suggested to reduce the crisis and ameliorate the negative developmental potential.     

Adolescent acting out when a parent has cancer

The psychological stresses which cancer exerts on a family system can be immense, both situationally and developmentally. These stresses can be unusually intense for the adolescent who has a parent ill with cancer. They can impact upon the adolescent in overt ways, such as increased household or child care duties, or in more covert ways such as in subtle role shifts in the relationship between the adolescent and both the ill and the well parent. The covert role shifts are especially thought to promote acting out and potential decompensation on the part of the adolescent. The acting out can have system-defecting and system-unifying properties, with the decompensation secondary to unbearable role shifts that reintensify the adolescent emotional contact with parents in the midst of a developmental process of separation. General clinical intervention points are suggested to reduce the crisis and ameliorate the negative developmental potential.1979, Fall     

Managed care at the bedside: how do we look in the moral mirror?

Managed care per se is a morally neutral concept; however, as practiced today, it raises serious ethical issues at the clinical, managerial, and social levels. This essay focuses on the ethical issues that arise at the bedside, looking first at the ethical conflicts faced by the physician who is charged with responsibility for care of the patient and then turning to the way in which managed care exacts costs that are measured not in dollars but in compromises in the caring dimensions of the patient-physician relationship.     

Therapeutic Misconceptions: When the Voices of Caring and Research Are Misconstrued as the Voice of Curing

Research on doctor-patient communication has characterized such interactions as being asymmetrical. The present article tries to shift emphasis away from the different orientations individuals bring to the communicative setting and attempts to highlight the different orientations ("voices") within a given individual. We draw on an in-depth analysis of discourse between a 2 l-year-old man who can be ascribed the roles of both patient and potential research subject and an interviewer who acts in both the role of medical staff and researcher. Focusing our analysis on a limited number of linguistic forms (pronouns and demonstratives), it is argued that the use of the same form for different referents signals a conflation of two voices—the voice of health care ("caring") and the voice of "research." Furthermore, we argue that the voice of research is most likely to be interpreted by the patient/research subject within the framework of curing. As such, the present article promotes a shift in emphasis from different institutional—and as such often assumed to be preexisting—orientations between the communicating parties to differing orientations within the individual that cannot help but be misconstrued in terms of the curing voice. Our conclusion focuses on the ethical and discourse analytic implications of analyzing voices in a discussion.     

Therapeutic misconceptions: when the voices of caring and research are misconstrued as the voice of curing

Research on doctor-patient communication has characterized such interactions as being asymmetrical. The present article tries to shift emphasis away from the different orientations individuals bring to the communicative setting and attempts to highlight the different orientations ("voices") within a given individual. We draw on an in-depth analysis of discourse between a 21-year-old man who can be ascribed the roles of both patient and potential research subject and an interviewer who acts in both the role of medical staff and researcher. Focusing our analysis on a limited number of linguistic forms (pronouns and demonstratives), it is argued that the use of the same form for different referents signals a conflation of two voices -- the voice of health care ("caring") and the voice of "research." Furthermore, we argue that the voice of research is most likely to be interpreted by the patient/research subject within the framework of curing. As such, the present article promotes a shift in emphasis from different institutional -- and as such often assumed to be preexisting -- orientations between the communicating parties to differing orientations within the individual that cannot help but be misconstrued in terms of the curing voice. Our conclusion focuses on the ethical and discourse analytic implications of analyzing voices in a discussion.     

Innovation,research integrity,and change: A conflict of interest management framework for program developers

Psychology and the social sciences have an important role to play in developing innovative solutions to pressing global mental health and social problems. Programs developed by psychologists and other social scientists have immense potential to alleviate suffering and to promote healthy human development across the lifespan. In order to realise this potential program developers must manage the research and development challenges involved in testing an intervention, evaluating, and then preparing it for wider dissemination and scaling. Particular challenges and conflicts can occur in managing the joint roles of being a program developer and a researcher evaluating an intervention or innovation. This article examines the management of various forms of conflicts of interest that have the potential to produce bias and decrease the confidence of policy makers, funders, practitioners, fellow researchers, and the public in the value of psychological interventions. We argue that best practice guidelines are needed to assist developers negotiate the predictable, sometime unavoidable but challenging conflicts of interest that arise in the research process.     

Clinical ethics and the suffering Christian.

Contrary to the ecumenical spirit of our time, the differences among the Christian religions bring into question what one can say or do in common with fellow Christians. This issue, echoing the program of this journal, accentuates those differences, specifically when we focus on the Christian who is ill and suffering. At the bedside, it is the specifics of a religion, including not only its doctrines, but its informing and sustaining narratives, that must particularly be brought into play for the sake of the patient. Given this, our focus in this article regards what such a view implies for the clinician who is caring for a Christian patient whose religion he may or may not share, in general or in its specifics. Our basic conclusion is that the tendency for the clinician to act as both the patient's spiritual counselor, as well as his clinician, is generally neither prudent nor appropriate. Both hats should not be worn concurrently. This view is advanced not only because of concerns regarding patient vulnerability and the possible abuse of power, but also because the two roles may collide with or undermine each other.     

Anticruelty care: commentary

The anticruelty policy is a best-interests test for treatment plans including decisions to forgo life-sustaining therapy for certain incompetent patients. In connection with specific proposed therapy, the policy requires no reference to the patient's unknowable values, subjective experiences, or quality of life. The decision to undertake a treatment plan derives from the caregiver's knowledge of burdens and benefits of that treatment when used in caring for the competent or for those incompetents capable of growth or repair. The caregiver should weigh the potentially cruel effects of treatment against the likelihood of reducing suffering or encumbrance with the treatment. The terms "burden" and "benefit," in fact, are replaced by the terms "cruelty" and "beneficence," as the relevant opposing outcomes that must be weighed. Thus, the anticruelty policy shifts our scrutiny from experiences of the patient that we cannot evaluate to the proposed actions of the competent decision makers and caregivers. Notably, it is a protreatment policy when the goals of medicine are attainable; and it is an anticruelty policy when they are not. The policy does evaluate the world of the patient to the extent that it requires a judgment based upon external appearances about patient pleasure or happiness in living. It presumes to universalize larger societal values about cruelty, beneficence, compassionate concern for the helpless, and certain rights of individuals. And it presumes to universalize on the patient's behalf specific medical values about hopeless injury, timely death, the goals of medicine, and cruelty, which should remain open to societal discussion and revision. The presented definition of hopeless injury does not require brain death, coma, or persistent vegetative state. Specifically, the policy holds that death is timely for a patient with hopeless injury, and that prevention of death for such patients is not a goal of medicine but a cruelty.     

An “actively caring” model for occupational safety: A field test

Actively caring refers to individuals caring enough about the health and safety of others to act accordingly. Actively caring behavior in an industrial context can take the form of looking for environmental hazards and unsafe work practices and implementing appropriate corrective actions when unsafe conditions or behaviors are observed. Individuals presumed most likely to actively care are those high in self-esteem (i.e., feel valuable), optimism (i.e., feel they can make a difference), and group belongingness or cohesiveness (e.g., feel close to members of their work group). In order to test the actively caring model, this study assessed the relationship between self-esteem, group cohesion, and optimism with employees' self-reports of willingness to actively care. In addition to self-report data, we assessed the occurrence of certain actively caring behaviors in the work setting. Specifically, actively caring was measured by counting the number of “actively caring thank-you cards” given or received for actively caring behaviors. Self-esteem, group cohesion, and optimism scores predicted significant and independent variance in self-reported willingness to actively care. Furthermore, those workers who either gave or received thank-you cards scored significantly higher on measures of self-esteem and group cohesiveness than those workers who did not give or receive thank-you cards. Implications for future research and application of the actively caring concept are discussed.     

Non-heart-beating organ donation: personal and institutional conflicts of interest

While procurement of organs from donors who are not "brain dead" does not appear to pose insurmountable moral obstacles, the social practice may raise questions of conflict of interest. Non-heart-beating organ donation opens the door for pressure on patients or families to forgo possibly beneficial treatment to provide organs to save others. The combined effects of non-heart-beating donation and organ shortages at major transplant centers brought about by the 1991 United Network for Organ Sharing (UNOS) local-use organ allocation policy created potential conflicts, including the fact that candidates for organs become potential donors far more frequently than previously. Hospitals with a major emphasis on transplantation have economic and academic interests that may have been hurt by the relative organ shortage. Some may view non-heart-beating organ donation as a way to restore weakened programs and thus unconsciously compromise recognition of problems associated with non-heart-beating donation.     

A comparison of conflict of interest policies at peer-reviewed journals in different scientific disciplines

Scientific journals can promote ethical publication practices through policies on conflicts of interest. However, the prevalence of conflict of interest policies and the definition of conflict of interest appear to vary across scientific disciplines. This survey of high-impact, peer-reviewed journals in 12 different scientific disciplines was conducted to assess these variations. The survey identified published conflict of interest policies in 28 of 84 journals (33%). However, when representatives of 49 of the 84 journals (58%) completed a Web-based survey about journal conflict of interest policies, 39 (80%) reported having such a policy. Frequency of policies (including those not published) varied by discipline, from 100% among general medical journals to none among physics journals. Financial interests were most frequently addressed with relation to authors; policies for reviewers most often addressed non-financial conflicts. Twenty-two of the 39 journals with policies (56%) had policies about editors’ conflicts. The highest impact journals in each category were most likely to have a published policy, and the frequency of policies fell linearly with rank; for example, policies were published by 58% of journals ranked 1 in their category, 42% of journals ranked third, and 8% of journals ranked seventh (test for trend, p = 0.003). Having a conflict of interest policy was also associated with a self-reported history of problems with conflict of interest. The prevalence of published conflict of interest policies was higher than that reported in a 1997 study, an increase that might be attributable to heightened awareness of conflict of interest issues. However, many of the journals with policies do not make them readily available and many of those policies that were available lacked clear definitions of conflict of interest or details about how disclosures would be managed during peer review and publication.     

Understanding public opinion relating to the establishment of community mental health facilities: implications of a discourse analytic approach

This paper demonstrates a novel approach to investigating the problem of public opposition to community mental health facilities. With the move towards community care, organizations setting up mental health facilities have encountered public opposition. It has been argued that this is due, in part, to the attitudes held by the public towards mentally ill people. A knowledge and understanding of attitudes towards this client group therefore has the potential to be of practical use to policy makers and practitioners who have a responsibility to consult on, and implement, community care for mentally ill people. The survey approaches and hypothetical situations used in previous British studies of community attitudes towards mentally ill people have, however, failed to take account of the rhetorical richness and complexity of the attitudes likely to be expressed in real‐life community care contexts. By contrast, the study reported in this paper used a discourse analytic approach to explore the views expressed about mentally ill people in a ‘hot situation’. Specifically, people's views were explored in the contexts of the arguments they used to challenge or advocate a supported accommodation project for mentally ill people in their community. This paper examines some of these arguments and discusses the theoretical implications for traditional approaches to attitude research. In conclusion, the potential practical utility of the findings is considered. Copyright © 1999 John Wiley & Sons, Ltd.     

Surrogate medical decision making on behalf of a never-competent, profoundly intellectually disabled patient who is acutely ill

With the improvements in medical care and resultant increase in life expectancy of the intellectually disabled, it will become more common for healthcare providers to be confronted by ethical dilemmas in the care of this patient population. Many of the dilemmas will focus on what is in the best interest of patients who have never been able to express their wishes with regard to medical and end-of-life care and who should be empowered to exercise surrogate medical decision-making authority on their behalf. A case is presented that exemplifies the ethical and legal tensions surrounding surrogate medical decision making for acutely ill, never-competent, profoundly intellectually disabled patients.     

Views on Aging: How Caring for an Aging Parent Influences Adult Daughters’ Perspectives on Later Life

Approximately 24 million Americans provide informal (unpaid) care to a family member or friend who is disabled or ill. The most common informal caregiving relationship is that of an adult child providing assistance to an elderly parent. Women in midlife represent most of the unpaid caregivers for older adults, yet little is known about how providing care affects women’s beliefs about and desires for their own aging. The purpose of this study was to understand how being a caregiver affected adult daughters’ perspectives on their own late life. In-depth interviews were conducted with a diverse sample of 15 women between the ages of 50 and 65 who were providing care to an ill and disabled parent or parent-in-law. Analysis of the qualitative data revealed that caregivers were affected by the caregiving experience in five ways: gaining awareness, provoking fears, providing a comparison for current functioning, providing firsthand knowledge about aging, and providing an example of how to age. This study offers an alternative perspective on the well-documented negative consequences of caring for an older person, suggesting that caregiving encourages personal growth for adult daughters in midlife.     

The telltale heart: public policy and the utilization of non-heart-beating donors

The transplant community has quietly initiated efforts to expand the current pool of cadaver organ donors to include those who are dead by cardiac criteria but cannot be pronounced dead using brain-based criteria. There are many reasons for concern about "policy creep" regarding who is defined as a potential organ donor. These reasons include loss of trust in the transplant community because of confusion over the protocols to be used, blurring the line between life and death, stress on family members, and burdens imposed on health care providers when a long-standing policy regarding who can serve as a cadaver organ donor is unilaterally changed. While these concerns are not sufficient reason for abandoning efforts to broaden existing eligibility standards for cadaver donation, they are sufficient reasons for the transplant community to desist in changing existing standards without widespread professional and public discussion.     

Caring: from philosophical concerns to practice

I read Hilde L. Nelson's article with great interest. To be "against caring" is tantamount to being against apple pie and motherhood. Caring as philosophy, theory, behavior, and ontology is pervasive in the literature of almost all socially interactive professions. Nelson's article raises common concerns about caring....My difficulties with Nelson's argument against caring center around three issues: misunderstanding of caring in nursing practice, discomfort with ambiguity, and heroism as a replacement for the ethics of care....     

Private-sector care for chronically mentally ill individuals. The more things change, the more they stay the same

Two profit-making industries, nursing homes and board-and-care homes, care for about one million chronic mental patients. This care is primarily custodial and probably not very different from the care patients received in the public sector prior to deinstitutionalization. Moreover, certain characteristics of privately owned facilities encourage poor patient care so as to maximize profit. The problem could be ameliorated if chronic mental patients were strong and informed consumers or if the public sector strongly regulated proprietary care. However, neither of these two conditions now hold. Perhaps the apparent difficulties in significantly improving care for chronically mentally ill individuals despite seemingly major changes in policy reflect a fundamental problem in overall social policy--a reluctance to care for chronically indigent individuals of all kinds.