Autonomy Rights and Medical Information

Autonomy Rights and Medical Information

Children born today have a fifty-fifty chance of living to see their hundredth birthday, and even those who do not reach the century mark will likely live far longer lives than most people today. As more and more people join the ranks of the elderly in the years to come, there will be an inevitable concomitant increase in the amount of healthcare they require. Likewise, innovations in healthcare technology are helping to defeat many diseases that have long plagued humankind. These trends will inevitably create new ethical dilemmas for healthcare practitioners concerning the conditions under which patients and related parties should have control over medical information and decision-making as well as how health care professionals should manage and protect medical information. To gain further insights into these issues, this paper provides a review of the relevant literature to provide the ethical background, the positive and negative aspects of the ethical dilemma, and the rationale in support of its selection. Finally, a description of the selected ethical decision-making model is followed by its application to the ethical dilemma, followed by a summary of the research and important findings based on the model application in the conclusion.

REVIEW AND DISCUSSION

Ethical Background

There has been an ongoing debate in the medical community concerning how much information patients should be provided concerning their conditions, but a growing trend indicates that healthcare consumers have acquired a significant amount of autonomy that is widely recognized and respected by clinicians. For instance, according to Parens and Asch (2000), "While autonomy is an important value in medicine, it has never been absolute. In recent decades, negative autonomy rights have become quite strong, meaning that autonomous patients have the right to refuse interventions (i.e., to be left alone), even when such refusals will lead to death" (p. 302). By contrast, Parens and Asch note that positive autonomy rights are far more restrictive. Positive autonomy rights to obtain information or healthcare services are limited by "what reasonable people would want to know, what services are reasonably expected to be beneficial, and what services the provider believes are ethical to provide" (2000, pp. 302-303). The distinction between positive and negative patient rights is important, Parens and Asch (2000) emphasize, because although healthcare providers do not have an ethical duty to disclose information beyond these reasonable levels, some healthcare providers remain confused concerning just how much information or services should be offered and these issues are discussed further below.

Positive and Negative Aspects of the Ethical Dilemma

While the specific positive and negative aspects of an ethical dilemma involving patient autonomy will relate to the specifics involved, for the sake of illustration, an ethical dilemma involving the sharing of genetic information provides a useful point of departure. A hypothetical couple (a Hispanic father and white mother), seeks out the assistance of a physician specializing in assisted reproduction to help them conceive a child. Following the successful conception of a fetus, the physician discovers a marker on a DNA chromosome strand in the mother when the fetus is 3 weeks old that points to a possible, but currently unproven, birth defect that could have life-altering implications for the child and the physician is uncertain whether to inform the parents or not given the unproven nature of the potential threat. The positive aspect of this ethical dilemma is the likelihood that the child will be born normally and the parents will have enjoyed their absolute autonomous right to reproduce. In sum, Talbott (2007) reports that, "Autonomy rights are the rights necessary to develop and exercise one's own voice" (p. 113). The offsetting negative aspect of this ethical dilemma is the potential for a having a child that will require a lifetime of intensive care with questionable quality of life factors when this outcome could have been avoided through an abortion.

Stakeholders

There are a number of stakeholders involved in this ethical dilemma, including the mother and father (whose negative autonomy rights to conceive or not conceive at their discretion are virtually absolute in this area) (Parens & Asch, 2000) and the physician, of course, but it is reasonable to suggest that the members of the larger community in which these decisions are made are also stakeholders since these types of decisions can also affect them because of the healthcare burden and enormous costs that lifelong disabilities involve.

Rationale in Support of Dilemma Selection

In an increasingly multicultural society, identifying relevant ethical dilemmas and ethical decision-making models that provide a cultural component can help overcome potentially disruptive cross-cultural barriers to communication. In addition, as innovations in healthcare technology continue to introduce new ways to test for problems in vitro, there will likely be an inevitable increase in these types of ethical dilemmas for healthcare practitioners in the future as well.

Description of the Selected Ethical Decision-Making Model

The transcultural integrative decision making model developed by Garcia, Cartwright, Winston, and Borzuchowska (2003) was selected for this analysis. According to Bowles, Collingridge, Curry and Valentine (2006), many ethical decision-making models such as the rational model (which is based on the moral rightness of an act or decision) fail to draw on the broad range of ethical theories that is needed to develop informed and timely decisions. In response to these constraints, Cottone (2001) developed a social constructivist model that is based on the assumption that the ethical decision-making process is a social or interactional phenomenon that draws on both sociological as well as psychological theories. Using the Cottone constructivist model as a basis, Garcia, Cartwright, Winston, and Borzuchowska (2003) incorporated elements from Tarvydas's (1998) integrative ethical decision-making model as well as the collaboration model proposed by Davis (1997), which added collaboration and group discussion, to create a "transcultural integrative decision making model" that takes into account potentially important cross-cultural differences between the players involved the decision.

The transcultural integrative decision making model developed by Garcia et al. (2003) operates in a step-wise fashion as set forth in Table 1 below.

Table 1

Steps to the transcultural integrative decision making model

Step

Description

Application to Ethical Dilemma

Step One

This step involves interpreting the situation through awareness and fact finding, with a particular emphasis on sensitivity to all parties' cultural identities, acculturations and role socialization, including any intragroup differences that might affect the ethical decision-making process.

This step would require an analysis of the mother's right to be informed about the possibility of a birth defect as well as the Hispanic husband's perceptions concerning the potential damaged DNA chromosome should also be taken into account.

Step Two

Formulating an ethical decision. This involves an assessment of all salient perspectives, including cross-cultural issues, as well as controlling laws and regulations.

Healthcare consumers have an overarching legal right as well as a legal duty to be informed in such cases (Ost, 1984).

Step Three

The penultimate step requires weighting competing non-moral values and affirming the course of action. In other words, reflect on personal blind spots and any contextual and/or cultural issues that can influence the values and decisions selected. This step also involves an analysis of any legal constraints, organizational costs, and other practical limitations.

In this step, the healthcare provider would be required to re-review the facts in the case to ensure these were not interpreted without taking all sides into consideration based on personal bias, stereotypes or prejudices that might not be consciously or readily recognized. This step would also require an assessment of the various "what-if" outcomes that might result from sharing the genetic information with the mother only, both the mother and the father, or neither of them.

Step Four

The final step involves planning, implementing, and evaluating the selected course of action, including anticipating any contextual and cultural barriers that could interfere with the decision or course of action.

Based on the foregoing considerations, the physician would appear to have an ethical responsibility to share his discovery with the mother, but the decision to share this information with the father would be at the discretion of the mother.

Source: Adapted from Bowles et al., 2006

Application of the Transcultural Integrative Decision-Making Model to the Ethical Dilemma

An application of the transcultural integrative decision-making model described in Table 1 above to the ethical dilemma in question is provided in Table 2 below.

Table 2

Application of the transcultural integrative decision-making model to the ethical dilemma