Robert S. Olick

Defining features of advance directives in law and clinical practice.

In the > 30 years since the New Jersey Supreme Courts seminal opinion in the case of Karen Ann Quinlan, all 50 states and the District of Columbia have enacted legislation to recognize the legal right of competent adults to write advance directives. The purpose of advance directives is to provide direction for health-care decisions near the end of life, when the ravages of illness, disease, or injury have taken the ability to decide for ones self. This article reviews the defining features of advance directives and the governing law, discusses some common practical concerns regarding the use and effectiveness of advance directives, and identifies several significant ethical-legal challenges for honoring advance directives at the bedside. With a primary focus on the health-care proxy, the anatomy of advance directives is analyzed under four general rubrics: formal requirements, decisional capacity and when the directive takes effect, rights and responsibilities of proxies and health-care providers, and the scope and limitations of decisions to forego life-sustaining treatment. There is much common ground among state laws, but particular legal provisions may vary from state to state. Physicians, nurses, social workers, and other health-care professionals should be familiar with the law of their home state.

It's ethical, but is it legal? Teaching ethics and law in the medical school curriculum.

While Western medical ethics has ancient roots in the teachings of Hippocrates, its standing in the undergraduate medical curriculum is a distinctly modern development. Today, all of the 127 accredited U.S. medical schools offer formal biomedical ethics instruction, and nearly all offer instruction in the related discipline of health law. This article describes how biomedical ethics and health law are taught at the University of Iowa College of Medicine, one of 12 medical schools that offers separate required courses in both ethics and law. Often ethics and law overlap; often, to act ethically is to act legally. But medical students and practicing physicians also regularly confront dilemmas that pose the question, “Its ethical, but is it legal?” This article discusses the goals, methods, and core themes of teaching issues at the intersection of medicine, ethics, and law, and how the approach to this instruction is designed to offer students a tool kit to begin to deal effectively with these complex issues in professional life. Anat Rec (New Anat) 265:5–9, 2001.

“You Can’t be Cold and Scientific” Community Views on Ethical Issues in Intellectual Disability Research

Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety.

Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

Rationing the flu vaccine.

In October 2004, the CDC announced that Chiron Corporation, chief supplier of inactivated influenza vaccine for the United States for the 2004–2005 flu season, would not be providing the 50 million vaccinations it had promised—half of the anticipated 90–100 million doses from all sources projected for the flu season. The resultant shortage set off a firestorm of concern. Well known to health care providers, but less so to the general public, flu is a major killer. Last year, flu-related illnesses caused more than 36,000 deaths and approximately 200,000 hospitalizations in the United States alone. The ethical challenge was how to decide who should receive this scarce life-saving preventive treatment. This column sketches one approach to addressing this dilemma that explains and justifies core features of the rationing scheme followed by the Centers for Disease Control and Prevention (CDC) and local public health officials. I also identify a number of related issues that emerged in the face of the vaccine shortage.

Is It Worth It? Benefits in Research With Adults With Intellectual Disability

Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

What's the harm? Harms in research with adults with intellectual disability

Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

Should a Teenager Be Allowed to Leave the Hospital AMA to Attend His Father’s Funeral?

A teenager needs urgent medical treatment, but it will prevent him from attending his father’s funeral. His mother supports his decision. What should his doctors do? What should physicians do when an adolescent wishes to risk his physical health and leave the hospital to attend the funeral of his late father? What if the young man’s mother, and only remaining guardian, both supports and encourages such a decision? In this Ethics Rounds discussion, we examine the legality, morality, and safety of discharging a minor under such conditions.

A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

BACKGROUND Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. OBJECTIVE/HYPOTHESIS We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. METHODS We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. RESULTS We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. CONCLUSIONS Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights.

On the Scope and Limits of Advance Directives and Prospective Autonomy

In the US, most patients near the end of life die after a decision is taken to withhold or withdraw life-sustaining interventions. The ethical-legal consensus holds that families and healthcare providers called upon to decide on behalf of patients who lack capacity to speak for themselves should seek to determine what patients would choose for themselves and should also act in the patient’s best interests. Grounded in the ethical principle of prospective autonomy, law across the US recognizes the right of competent adults to write advance directives to direct and control healthcare decisions near the end of life, at a time of future decisional incapacity. This chapter discusses key features of advance directives and their scope and limits from both ethical and legal perspectives. Case examples are used to examine common ethical-legal challenges for honouring directives—in particular, dilemmas where it is reasonable to ask, “Although it’s ethical, is it legal?” My primary focus is the healthcare proxy, the preferred and most widely used form of advance directive in the US. Whether advance directives should be understood as binding documents is also considered. I argue that proxy directives should be considered prima facie binding, and that only in the case of the rebel proxy who fails to meet their fiduciary duty to the patient is there good and compelling ethical justification to override patient wishes and proxy authority.