Bioethics for Breakfast: Demystifying End-of-Life Care

Bioethics for Breakfast Seminars in Medicine, Law and Society

Leonard M. Fleck, PhD, and Karen Smith, LMSW, PhD, HEC-C, presented at the October 13 Bioethics for Breakfast session, offering their insight and expertise on the topic “Demystifying End-of-Life Care.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. The presentation portion of the session was recorded and is available to watch on our website.

The State of Michigan has recently approved the MI POST (Michigan Physician Order for Scope of Treatment), which allows a patient and physician to have in place directions (orders) on care to go between levels of treatment. Such orders typically specify the kind of care a terminally ill patient would want or refuse in an emergency situation outside a hospital setting. Such orders are agreed to by a competent patient or their representative and the attending physician. A POST document is often part of a larger advance care planning document.

Most patients do not have an advance directive or a POST. What happens when that patient is actively dying and the attending physician believes a Do Not Attempt Resuscitation order (DNAR) is in the best interest of that patient? Should that decision by the physician require the written consent of the patient’s family for that DNAR order? And what are the consequences for the patient if the family cannot reach agreement? If you were that patient, what would you regard as the most reasonable course of action? How would you ensure your wishes are followed?

Presenters Fleck and Smith gave some background on what it means to have a natural death and a managed death, noting that the majority of Americans today die a managed death. Smith explained that durable power of attorney and MI POST are the two state-authorized methods for directing end-of-life wishes. Fleck asked attendees to consider the following questions: Are the policies and practices in place regarding terminally ill incapacitated patients good enough? Are they the best we can do? What might we do better? What do we see as the main deficiencies in current policy and practice?

The presentation also explored how policy can protect patients and prevent suffering at the end of life and presented multiple case examples regarding terminal care in the ICU. Discussion during the Q&A portion focused on family disagreements in the ICU, the value of healthcare literacy and common misconceptions that stem from popular culture, and what happens when the court system is involved with end-of-life decisions.

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About the speakers

Leonard M. Fleck, PhD, is a Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University. Fleck’s interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has completed a book-length manuscript that addresses a number of ethical and policy issues related to precision medicine, primarily in a cancer treatment context. He also completed another book that addresses several contemporary issues related to bioethics and religion from a Rawlsian public reason perspective.

Karen Smith, LMSW, PhD, HEC-C, has been a member of hospital ethics committees for over 20 years. She is currently the Director of Ethics Integration for Henry Ford Health, a six-hospital system in metro Detroit. Smith publishes on issues related to clinical ethics the hospital setting. She specializes in death and dying issues and often works to educate the public on Advance Directive issues. She has been on the National Board for the Funeral Consumers Alliance which is a non-profit organization dedicated to providing the public education and advocacy related to after death needs.

Dr. Stahl and co-authors published in ‘Journal of Pain and Symptom Management’

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl is co-author of an article published in the February 2018 issue of the Journal of Pain and Symptom Management. “Addressing a Patient’s Hope for a Miracle” was written by Myrick C. Shinall Jr. (Vanderbilt University Medical Center Section of Palliative Care), Dr. Stahl, and Trevor M. Bibler (Baylor College of Medicine).

Abstract: Ill patients may make decisions to continue aggressive life-prolonging care based on hope for a miraculous recovery, and clinicians can find goals of care discussions with these patients extremely challenging. Thus, palliative care providers may be asked to help in these discussions. The concept of “miracle” can express a multitude of hopes, fears, and religious commitments. Effective, sensitive engagement requires the palliative care provider to attend to these variegated hopes, fears, and commitments. This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by palliative care providers.

The full text is available online through Elsevier/Journal of Pain and Symptom Management (MSU Library or other institutional access may be required to view this article).

Killing Children in Belgium

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By James Lindemann Nelson, PhD

Marie and Paul are both in the late stages of a terminal illness. Both know that they’ve only a short time to live and, despite good palliative care, both find waiting for their deaths to be unbearably awful. Their caregivers are having a very tough time controlling their pain and aren’t at all confident that they’ll be able to do much better. Marie and Paul are as clear about the irrevocable character of death as anyone can be; they’re each equally clear that they want to die as soon as possible.

Paul and Marie live in a country where euthanasia is legal and carefully monitored. Their requests have been vetted by an interdisciplinary team of professionals who certify their competence in general and their grasp of their own situations in particular. Should they be killed?

This is tough question. There are many thoughtful people of good will who think that, legal or not, it is always seriously wrong to take human life, or innocent human life, or who aren’t convinced that there are no realistic options that will relieve suffering without killing. Others think that, while in principle it might not be immoral to satisfy some requests for euthanasia, no general policy can reliably sort out the justifiable cases, or that there could be no policy whose bad consequences wouldn’t outweigh any good they might do.

Yet there are many equally thoughtful and well disposed people who think that, in carefully identified circumstances—for example, circumstances like those in which Marie and Paul find themselves—euthanasia is a morally acceptable option. If you’re inclined to share this view, consider this: Marie just passed her 18th birthday; Paul is six months shy of his. Does that difference mean that, while killing Marie is allowable, killing Paul is wrong?

In Belgium, they tend to think not. Euthanasia has been legal there since 2002, but only available to people eighteen year of age or older. In March of this year, King Philippe signed into law a measure passed by parliament removing the age limit; euthanasia is now available to terminally ill patients who are undergoing unbearable and unrelievable suffering without an age limit. Those younger than eighteen have to request euthanasia explicitly and voluntarily, have the concurrence of both parents (or of their guardians), and be free of intellectual impairment or of mental illness. Further, a multidisciplinary panel must determine that the child requesting euthanasia has the kind of discernment necessary to understand what they are requesting.

Now, if the thoughtful critics are right, and euthanasia is as such immoral, or as such impossible or highly unlikely to turn into a legitimate medical procedure without doing more harm than good, than this legislation is ill considered. Yet if euthanasia’s thoughtful champions are right—if, say, the standing Belgian law were defensible—what then? Has an irrationally arbitrary barrier been eliminated, as the story of Paul and Marie is supposed to suggest? Or have the gates been open to killing terminally ill children, highly vulnerable to manipulation, who may be more of a burden to their caregivers than to themselves?

In a new article in JAMA, “Pediatric Euthanasia in Belgium: Disturbing Developments,” Arthur Siegal, Arthur Caplan, and MSU alumnus Dominic Sisti argue that limiting euthanasia to adults is not arbitrary. They don’t rely on speculation that other people would pressure terminally ill kids into requesting euthanasia. Rather, assuming (for sake of argument) that killing patients is a defensible response to the triggering conditions specified in Belgian law, they claim that a necessary condition for euthanasia’s justification—unbearable, unrelievable suffering—is one to which children are not vulnerable. They write:

What the law does not consider, however, is that adults choose euthanasia for reasons that go beyond pain. For adults, the decision to end their life can be based upon the fear of a loss of control, not wanting to burden others, or the desire not to spend their final days of life fully sedated. These desires might be supported by the experience they have had witnessing a loved one express a loss of dignity or because they understand what terminal sedation is and wish to refuse it. Children, however, lack the intellectual capacity to develop a sophisticated preference against palliative interventions of last resort. Instead, in the case of the new Belgian law, children seem to be asked to choose between unbearable suffering on the one hand and death on the other. (JAMA. Published online April 17, 2014. doi:10.1001/jama.2014.4257)

This seems open to an immediate rejoinder: even if children are not susceptible to the affront to dignity that some last resort palliative interventions might be thought to present, even if they don’t (or oughtn’t to?) worry about burdening others, and even if they don’t experience loss of control as humiliation, they can still suffer intense pain. The rebuttal seems equally immediate: there is no need for those kids to suffer agonizing pain, and no need to kill them to avoid it. If all other palliative resources fail, there is always terminal sedation as a possibility. While some adults might have well-considered reasons to reject that option, no child could.

The problem here is that “child” covers a lot of territory. The image that really powers the Siegal-Sisti-Caplan argument is the specter of giving lethal injections to 10 year olds. It isn’t clear that their argument is at all compelling in a case like Paul’s. Is it really out of the question that a 17 year old might have a sense of his own dignity, a mature interest in maintaining some measure of control over what befalls him, or a loving concern for the sufferings of his family, such that euthanasia would seem preferable to terminal sedation? If so, then we need to worry about cases like Marie’s as well; there is nothing magic about a few months. If not, perhaps the lesson of Siegal, Sisti, and Caplan’s paper is the need for the Belgians to be sure that their “discernment” criterion is alert to whether minors who request euthanasia can suffer in ways that opiates can’t extinguish.

There are, of course, rather deep complications remaining. The JAMA authors hold that, for children anyway, aggressive palliative care—even care that risks hastening death—is morally preferable to interventions whose use must involve an intention to kill. They call for more education and clinical guidance, and there’s reason to think it’s needed, even when aggressive palliation is available. According to a recent article on the use of terminal sedation in pediatric populations in Flanders, Belgium, by Pousset and colleagues, nearly a quarter of the physicians involved reported that they had intended to secure the child’s death via terminal sedation, which ought to be worrisome for those like Siegal, Sisti, and Caplan, who place great moral weight on the notion of intent. Of more general concern might be the following findings: very few of the children Pousset et al. studied had requested terminal sedation, and in over twenty percent of cases, there was no parental consent. (J Pain Symptom Manage. 2011 Feb;41(2):449-55. doi: 10.1016/j.jpainsymman.2010.04.025. Epub 2010 Dec 10.)

One place, then, that the “Disturbing Developments” article might take us is into the arcana of action theory and the lore of double effect to explore further whether the notion of intention can do the work that Siegal, Sisti, and Caplan ask it to do. (For those so inclined, a place to start might be the entry, “Doctrine of Double Effect” in the Stanford Encyclopedia of Philosophy.)

My own inclination at this point in the discussion is to look harder at the idea of arbitrariness. If euthanasia has a legitimate place in end-of-life care, the new Belgian law invites reflection on how serious a matter is it to deny that option it to those who might want to choose it. No one is confused about the arbitrariness of age limits in general terms: there will always be some people younger that the stipulated limit who could out-perform some of those older—who could, for example, vote more wisely or drive more safely. Still, as a matter of social policy, we are willing to withhold franchise from those bright, well-informed, and politically passionate 17 year olds who could vote much more thoughtfully that many 18 year olds (or 60 year olds, for that matter); we’re quite willing to force mature and highly coordinated 14 year olds who could drive competently to wait, rather than set up less crude ways of detecting readiness. Yet if this is an injustice to the young people involved, it seems a small one; almost before they know it, they will cross the age line. At least for many gravely ill children, the same remedy is, most sadly, not to hand.


Gerlin A. Child Euthanasia Law in Belgium First to End Age Limits. Bloomberg. Mar 26, 2014. Retrieved from:
Pousset G, Bilsen J, Cohen J, Mortier F, Deliens L. Continuous deep sedation at the end of life of children in Flanders, Belgium. J Pain Symptom Manage. Feb 2011;41(2):449-455. doi: 10.1016/j.jpainsymman.2010.04.025. Epub 2010 Dec 10.
Siegel MA, Sisti DA, Caplan AL. Pediatric Euthanasia in Belgium: Disturbing Developments. JAMA. 2014;():. doi:10.1001/jama.2014.4257. Epub Apr 17, 2014.

jim-nelsonJames Lindemann Nelson, PhD, is a Professor of Philosophy in the College of Arts and Letters at Michigan State University.

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