Journal of Bioethical Inquiry, Volume 8, Number 2 (June 2011)
Guest Editors: Sarah Winch and Ian Kerridge

Editorials

Editorial

Michael A. Ashby and Leigh E. Rich

Recent Developments

Recent Developments in Law

Bernadette Richards, Bill Madden, and Tina Cockburn

Symposium

No Chance, No Value, or No Way: Reassessing the Place of Futility in Health Care and Bioethics

Sarah Winch and Ian Kerridge

Defining Medical Futility and Improving Medical Care

Lawrence J. Schneiderman
It probably should not be surprising, in this time of soaring medical costs and proliferating technology, that an intense debate has arisen over the concept of medical futility. Should doctors be doing all the things they are doing? In particular, should they be attempting treatments that have little likelihood of achieving the goals of medicine? What are the goals of medicine? Can we agree when medical treatment fails to achieve such goals? What should the physician do and not do under such circumstances? Exploring these issues has forced us to revisit the doctor-patient relationship and the relationship of the medical profession to society in a most fundamental way. Medical futility has both a quantitative and qualitative component. I maintain that medical futility is the unacceptable likelihood of achieving an effect that the patient has the capacity to appreciate as a benefit. Both emphasized terms are important. A patient is neither a collection of organs nor merely an individual with desires. Rather, a patient (from the word “to suffer”) is a person who seeks the healing (meaning “to make whole”) powers of the physician. The relationship between the two is central to the healing process and the goals of medicine. Medicine today has the capacity to achieve a multitude of effects, raising and lowering blood pressure, speeding, slowing, and even removing and replacing the heart, to name but a minuscule few. But none of these effects is a benefit unless the patient has at the very least the capacity to appreciate it. Sadly, in the futility debate wherein some critics have failed or refused to define medical futility an important area of medicine has in large part been neglected, not only in treatment decisions at the bedside, but in public discussions—comfort care—the physician’s obligation to alleviate suffering, enhance well being and support the dignity of the patient in the last few days of life.

Medical Futility and the Death of a Child

Nancy S. Jecker
Our response to death may differ depending on the patient’s age. We may feel that death is a sad, but acceptable event in an elderly patient, yet feel that death in a very young patient is somehow unfair. This paper explores whether there is any ethical basis for our different responses. It examines in particular whether a patient’s age should be relevant to the determination that an intervention is medically futile. It also considers the responsibilities of health professionals and the rights of family members in situations where an interventions is clearly futile.

Same Coin-Different Sides? Futility and Patient Refusal of Treatment

Eleanor Milligan

Minimally Conscious States, Deep Brain Stimulation, and What Is Worse Than Futility

Grant Gillett
The concept of futility is sometimes regarded as a cloak for medical paternalism in that it rolls together medical and value judgments. Often, despite attempts to disambiguate the concept, that is true and it can be applied in such a way as to marginalize the real interests of a patient. I suggest we replace it with a conceptual toolkit that includes physiological futility, substantial benefit (SB), and the risk of unacceptable badness (RUB) in that these concepts allow us to articulate what is at stake in ethical judgments where outcomes are crucial in determining what should be done.

The Futility of Futility: Death Causation Is the “Elephant in the Room” in Discussions About Limitation of Medical Treatment

Michael A. Ashby
The term “futility” has been widely used in medical ethics and clinical medicine for more than twenty years now. At first glance it appears to offer a clear-cut categorical characterisation of medical treatments at the end of life, and an apparently objective way of making decisions that are seen to be emotionally painful for those close to the patient, and ethically, and also potentially legally hazardous for clinicians. It also appears to deal with causation, because omission of a futile treatment cannot surely be a cause of death. The problem is that futility can be argued to be a “false friend”, in that it gives an appearance of representing a reliable conceptual basis, in ethics, for limitation of medical treatment—usually in the context of dying—without actually doing so. In fact, the concept of futility is a conflation of clinical judgement about outcomes of treatment and the quality or even value of life, and has really failed to contribute much to the advancement of decision-making and hence care at the end-of-life. It also has the capacity to medicalise the personal space. Deliberations about the likely outcomes of medical treatment are necessary, and medical expertise is pivotal. However, futility is argued to have a better future in partnership with a broad social action agenda about the process of dying, such as that articulated in health promoting palliative care, as a basis for better “death-ways” in the 21st century (Kellehear 2005). Medicine needs to more honest and upfront about its limits, as death is, after all, the elephant in everybody’s room.

Futility Determination as a Process: Problems With Medical Sovereignty, Legal Issues, and the Strengths and Weakness of the Procedural Approach

Cameron Stewart
Futility is not a purely medical concept. Its subjective nature requires a balanced procedural approach where competing views can be aired and in which disputes can be resolved with procedural fairness. Law should play an important role in this process. Pure medical models of futility are based on a false claim of medical sovereignty. Procedural approaches avoid the problems of such claims. This paper examines the arguments for and against the adoption of a procedural approach to futility determination.

Original Research

Negative “GHIs,” the Right to Health Protection, and Future Generations

Jan Deckers
The argument has been made that future generations of human beings are being harmed unjustifiably by the actions individuals commit today. This paper addresses what it might mean to harm future generations, whether we might harm them, and what our duties toward future generations might be. After introducing the “Global Health Impact” (GHI) concept as a unit of measurement that evaluates the effects of human actions on the health of all organisms, an incomplete theory of human justice is proposed. Having shown that the negative GHIs of our current generation cause unfair harm to future generations, I argue that each human being must be allocated a fair threshold of negative GHIs that should not be exceeded. By emphasising the need to consider all the GHIs of human actions, the theory of human justice developed here is highly relevant to evaluate human actions that might affect future generations, for example those related to climate change.

“Unfit for Life”: A Case Study of Protector-Protected Analogies in Recent Advocacy of Eugenics and Coercive Genetic Discrimination

Mark Munsterhjelm
This paper utilizes Iris Marion Young’s critical, post-9/11 reading of Thomas Hobbes, “as a theorist of authoritarian government grounded in fear of threat” (Young 2003). Applying Young’s reading of Hobbes to the high-profile ethicist Julian Savulescu’s advocacy of genetic enhancement reveals an underlying unjust discrimination in Savulescu’s use of patriarchal protector–protected analogies between family and state. First, the paper shows how Savulescu’s concept of procreative beneficence, in which parents use genetic selection to have children who will have the “best lives” possible, is unjustly discriminatory against marginalized groups. Increasingly, however, he has invoked public security to justify genetic interventions. In recent speeches, Savulescu has argued a global state of emergency is developing due to a combination of the global environmental crisis, the threat of bioterrorism, and the failure of liberalism. To help deal with this emerging state of emergency, Savulescu advocates an unjustly discriminatory array of genetic-based governance practices, including detention and segregation.

Marginalizing Experience: A Critical Analysis of Public Discourse Surrounding Stem Cell Research in Australia (2005–6)

Tamra Lysaght, John Miles Little, and Ian Harold Kerridge
Over the past decade, stem cell science has generated considerable public and political debate. These debates tend to focus on issues concerning the protection of nascent human life and the need to generate medical and therapeutic treatments for the sick and vulnerable. The framing of the public debate around these issues not only dichotomises and oversimplifies the issues at stake, but tends to marginalise certain types of voices, such as the women who donate their eggs and/or embryos to stem cell research and the patients who might benefit from its potential clinical outcomes. This paper draws on empirical research conducted on a recent stem cell policy episode in Australia. From the qualitative examination of 109 newspaper opinion editorials and twenty-three in-depth interviews, it is argued that these voices are marginalised because they are based on discourses that have less epistemological status in public debate. Our results suggest that the personal experiences of women and patients are marginalised by the alliances that form between more powerful discourse communities that use science as a source of authority and legitimation. It is argued that members of these communities establish legitimacy and assert authority in public debate by discursively deploying science in claims that marginalise other epistemologies. Implications are discussed along with suggestions for a more enriched and inclusive public debate.

Reviews

Tortured: When Good Soldiers Do Bad Things

Leonard Rubenstein

The Social Network

Katrina A. Bramstedt

What Is Nanotechnology and Why Does It Matter? From Science to Ethics

Jennifer Kuzma

Case Studies

Republication: Taking the Hard Road

Bill Lukin

Response

Henry Kilham and David Isaacs

Response

Frank Brennan

In That Case: Call for Responses

Paul A. Komesaroff