Center for Ethics Assistant Director Libby Bogdan-Lovis has an essay in the latest issue of Narrative Inquiry in Bioethics. In her essay, “The Trip to the Dentist,” Bogdan-Lovis writes about her mother, and of a specific experience that would greatly influence subsequent end-of-life decision-making.
The essay appears in the Summer 2020 issue of the journal, which is published by Johns Hopkins University Press. The issue is centered on “Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers.”
The full text is available online via Project MUSE (MSU Library or other institutional access may be required to view this article).
Kevin Foley, MD, and Leonard Fleck, PhD, presented at the Bioethics for Breakfast event on December 8, 2016, offering perspective and insight on the topic, “Advanced Dementia and the ICU Siren’s Song: When We Build It, Why Do They Come?”
When nursing home patients with late-stage Alzheimer’s or other advanced forms of dementia develop sepsis or pneumonia, should they be sent to an ICU and hooked up to a ventilator? This is the question that was posed in a couple recent medical journal articles. This question can be seen as a medical care issue, an ethics issue, and a policy issue. Is this practice in the best interest of these patients? Why does this seem to be happening with greater frequency? Is there an ethically preferable alternative? Given the relative scarcity of ICU beds, is this a good use of an ICU bed? Are there changes in policy and practice that need to be considered? What should those changes look like?
We start with a statistical picture. About 7.4% of adults over age 75 live in nursing homes; that rises to 16% for adults over age 85. Somewhere between 50% and 70% of nursing home patients have some form of dementia. For the vast majority of these patients who have dementia, their caregivers see comfort care as the goal of care. In spite of that, many of these patients receive more aggressive care than they desire. A common enough scenario is that these patients in late-stage dementia (no longer able to take food by mouth) develop a pneumonia, perhaps related to aspiration as a result of trying to provide food by mouth, and staff at the nursing home cannot provide what they see as necessary medical treatment. Such patients are then sent to a hospital Emergency Department. A palliative care consult would be appropriate at this point but most Emergency Department physicians are reluctant to request such a consult because of pre-existing beliefs and lack of knowledge. This deficiency has more recently been addressed in two publications, one of which is a consensus statement from the Society of Academic Emergency Medicine. See Naomi George et al. “Shared Decision Making to Support the Provision of Palliative and End-of-Life Care in the Emergency Department: A Consensus Statement and Research Agenda.”Academic Emergency Medicine 23 (2016): 1394-1402. See also Jason Bowman et al. “Acceptability and Reliability of a Novel Palliative Care Screening Tool Among Emergency Department Providers.”Academic Emergency Medicine 23 (2016): 694-702.
If these patients with late-stage dementia reach the ICU, then intensivists in the ICU are faced with another set of ethical issues. Very often they will judge that these patients have a very poor prognosis that can be made worse by the surgical placement of feeding tubes to correct for the inability of these patients to be fed by mouth. But the intensivists may have to deal with a family member who is a surrogate decision maker or a court-appointed guardian in the case of an unbefriended patient, and those individuals may, for various reasons, insist on more aggressive life-sustaining care. Those decision makers might represent the earlier expressed wishes by that patient, or fears of legal repercussions in the case of court-appointed guardians. Physicians then might need to be extraordinarily persuasive to prevent what they regard as choices that are contrary to the best interests of those patients. They may feel that they are being paternalistic in considering overriding what might be the preferences of that patient (albeit likely less informed than desirable at the time). Still, the American Medical Association Council on Ethical and Judicial Affairs says explicitly that physicians have as a first obligation not harming their patients in these circumstances. Consequently, they have the professional responsibility to act against the expressed wishes of that surrogate decision maker when that individual wishes to make a medical decision clearly contrary to the best interests of that patient. Obviously, the physician should make every effort to explain sensitively why such decisions are necessary.
These sorts of conversations can be very painful and confrontational. It is clearly better to avoid them through a more preventive approach. At the very least when patients are first diagnosed as being in the very early stages of dementia, conversations regarding various scenarios in late stage dementia should be addressed with both the patient and any surrogate decision maker. It may be difficult for those individuals to imagine vividly enough and accurately enough what those late stages might really be like when the issue of feeding tubes, ICU care, or use of ventilators might be broached. What some research has shown is that videos of patients in late-stage dementia allow for a much more accurate understanding of what choosing life-sustaining care might mean, the consequence of which is that virtually no one is then motivated to want such care in those circumstances.
Kevin Foley, MD, FACP, AGSF
Associate Professor and Associate Chair for Senior Health
Department of Family Medicine
Michigan State University College of Human Medicine
Director of Education and Clinical Operations
Division of Geriatrics and Gerontology
Michigan State University Clinical Center
Leonard M. Fleck, PhD
Professor of Philosophy and Medical Ethics
Center for Ethics and Humanities in the Life Sciences
College of Human Medicine
Michigan State University
About Bioethics for Breakfast: In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Ethics to partner on a bioethics seminar series. The Center for Ethics and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.