Seven in ten older Americans who require medical decisions in the final days of life lack capacity to make them. For many of us, our biggest life-and-death decisions—literally—will therefore be made by someone else. But how will they decide for us? Despite their critical role in choreographing the end of another’s life, we know remarkably little. Susan Shapiro’s new book, Speaking for the Dying, fills that void. Drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital, Shapiro will share how loved ones actually speak for the dying, the criteria they use in medical decisions on behalf of patients without capacity, and the limited role of advance directives in this process.
Join us for Dr. Shapiro’s lecture on Wednesday, November 13, 2019 from noon until 1 pm in person or online.
Susan P. Shapiro is a sociologist and research professor at the American Bar Foundation. She works at the intersection of law and relationships of trust in which one acts of behalf of a vulnerable other—for example, medical decision making for patients without capacity. Her publications examine the role of law at life’s end, ethics, agency theory, conflict of interest, the professions, securities fraud and regulation, and white-collar crime. In addition to scores of articles, she is the author of Speaking for the Dying: Life-and-Death Decisions in Intensive Care (U of Chicago Press), Tangled Loyalties: Conflict of Interest in Legal Practice (U of Michigan Press) and Wayward Capitalists: Target of the Securities and Exchange Commission (Yale U Press).
In person: This lecture will take place in C102 Patenge Room in East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.
On Monday, April 16, Center Assistant Professor Dr. Devan Stahl presented a lecture titled “Ethical Challenges to Advance Care Planning” to Muskegon Community College as part of their annual lecture series. The event was also in conjunction with National Healthcare Decisions Day. Dr. Stahl discussed the ethical challenges that patients, surrogates, and health care providers face when drafting and implementing advance directives, how those challenges are resolved, and strategies for enabling patients to creative effective and clinical useful advance directives. The event was attended by students and local health care providers.
A Letter to the Editor published at the end of November in The New England Journal of Medicine excited a lot of comment and mass media coverage. The letter by Holt and colleagues, “An Unconscious Patient with a DNR Tattoo,” made the news throughout the U.S., and internationally.
This was treated as an unusual oddity, but DNR tattoos are a lot more common than one might think. Try searching for images of them. The first I heard of them was a news report in the late ’80s of an ICU nurse who had one done, to guard against a fate that had befallen too many of her patients.
Acting on the advice of their ethics consultants, the University of Miami physicians decided to honor the tattoo and wrote a DNR order for the patient, but in the article they studiously avoided taking any position for or against DNR tattoos.
I think they were right to honor the tattoo, but maybe more timid than they needed to be on the general question. I’ll put up three cheers for DNR tattoos.
First, once I’ve got that tattoo, my advance directive goes wherever I go, always there when I need it. Unlike written directives, which are virtually never found in the ER, too seldom presented on admission, and often devilishly hard to get into the medical record for those patients who purportedly have one.
Second, unlike state-authorized advance directives, the DNR tattoo does not require anyone to witness my signature as evidence that the wishes expressed therein were indeed mine. Unless you imagine I was somehow unconscious or blind drunk when I got my tattoo, the wishes expressed thereupon are undoubtedly mine. And getting a witness for a state-authorized advance directive can be more difficult than it sounds, with all the people prohibited from serving under many statutes. Still, for the legally scrupulous among you with high pain tolerance, it may still be possible to have your DNR tattoo witnessed.
Third, “do-not-resuscitate” on the chest is no more ambiguous a directive than “do-not-resuscitate” in a written document. Neither of them provides a clue regarding the motivation for that instruction. What circumstances did the person have in mind at the time? What fate did they hope to avoid? Is the medical situation they are now in similar enough to what they had in mind? These may have been the “uncertainties” the University of Miami team had in mind when they initially decided not to honor the tattoo, deferring to “the principle of not choosing an irreversible path when faced with uncertainty.”
As I’ve just pointed out, these are not uncertainties unique to tattooed advance directives. Just as importantly, these are uncertainties that can be resolved by two factors that can tip the balance in favor of honoring the tattoo. First is knowledge of the circumstances in which the patient got the tattoo. Was it sometime during the course of a progressive, worsening illness? Then it is entirely reasonable to infer that the patient did not want to be resuscitated from the cardiac arrest waiting at the end of that decline. Second (and related) is prognosis. Given the severity of the patient’s condition, what are the chances of a successful resuscitation that at least might return them to their pre-admission baseline? If the chances are small, then consideration of their best interest does not carry enough weight to justify acting against the literal meaning of their tattoo. A little reading between the lines suggests that this combination of considerations is what persuaded the team at the University of Miami to honor their patient’s tattoo, just as it would have had the same directive been documented on paper.
Of course, there are some advantages to the paper version, and it would be irresponsible for me not to mention them.
First, unless I’m willing to tattoo a lot of skin, the paper version gives me the space I might use to elaborate on my preferences, not only about specific interventions, but more importantly about my goals, especially those outcomes I want to avoid.
Second, since the tattoo probably won’t meet the requirements as to form set under state statutes, it is an advance directive that won’t offer the liability immunities such statutes provide. Not an ethical objection, I note, but a powerful motivator for risk management departments to be more skittish than they need to be in most circumstances, making it less likely that my wishes will be honored.
Finally, a not inconsiderable factor favoring the paper version is the significantly lower risk of getting a nasty infection.
Looks like a virtual tie on paper, but on balance, I’m not about to toss out my paper advance directive for a tattoo. If I see one as an ethics consultant, however, I will give it very serious consideration.
Tom Tomlinson, PhD, is Director and Professor in the Center for Ethics and Humanities in the Life Sciences and Professor in the Department of Philosophy at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, January 23, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.
You must provide your name and email address to leave a comment. Your email address will not be made public.
Center Assistant Professor Dr. Devan Stahl recently presented at the Michigan Advance Care Planning Conference: Strengthen Best Practices & Community Engagement. The conference was held October 13-14 in Lansing and presented by the Michigan Primary Care Consortium.
Dr. Stahl presented on “Recurrent and Neglected Ethical Challenges in Advance Directives.” The presentation reviewed the ethical challenges providers and surrogates face when implementing advance directives. Those in attendance discussed how to evaluate and resolve these ethical challenges that commonly occur in the acute setting, as well as how to develop strategies for helping patient patients to create meaningful and clinically useful advance directives. The group also discussed the potential use of patience preference predictors as described by Drs. Stahl and Tomlinson in their recent podcast episode: The Patient Preference Predictor: Tomlinson and Stahl – Episode 1.
No Easy Answers in Bioethics is a new podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
In Episode 1, Center Director Dr. Tom Tomlinson and Assistant Professor Dr. Devan Stahl discuss the Patient Preference Predictor (PPP), a tool they are developing that could potentially supplement advance directives or surrogate decision makers for patients, or that could aid decision making for the “unbefriended” patient who has no family or friend to make their wishes known. Could the PPP be even better than a patient’s family member at predicting what a patient may want in a given scenario?
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript is forthcoming and will be available on the Center’s website.
Rose Seavolt, BSN, RN, CCP, presented at the Bioethics for Breakfast event on October 8th, offering insight perspective on the topic, “Is it just the money? Reimbursement for Advance Care Planning.”
In 1991 Congress passed the Patient Self Determination Act as a way of encouraging individuals to do advance care planning for future situations in which they, as patients, were incapable of making health care decisions for themselves. The law required hospitals and other health care facilities to inquire whether patients already had such directives, or would like the opportunity to complete such a directive. But no one would be paid to spend time with a patient to help them formulate more thoughtful directives. In 2009 the Obama Administration proposed paying physicians to provide this service as part of the health reform effort, but inflammatory “death panel” rhetoric resulted in that proposal’s quick demise. The innuendo was that physicians would counsel patients to accept an earlier death in order to save money for their hospital or health care system.
The Centers for Medicare and Medicaid Services (CMS) is again proposing to pay physicians and other health care providers to offer this service. In this Bioethics for Breakfast session we considered a more thoughtful assessment of this proposed legislation, both from a policy perspective and from the perspectives of patients, families, and health care professionals charged with carrying out this responsibility.
Rose Seavolt, BSN, RN, CCP
Rose Seavolt is an Advance Care Planning Coordinator and Next Steps Organizational Faculty for Spectrum Health System, Grand Rapids, MI, and certified in the Respecting Choices® model of advance care planning as a facilitator in all three steps and an instructor in First and Last Steps. Rose has clinical and leadership experience with individuals across the lifespan from neonates to geriatrics and various levels of engagement within healthcare systems. Rose has been instrumental in the development and introduction of each of the steps of advance care planning within Spectrum Health and the greater Grand Rapids area.
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.
The Clinical Ethics Interest Group will host an interactive workshop on Michigan’s advance directive laws and talking with patients about end-of-life decisions. Tom Tomlinson, Director of the Center for Ethics, will be the featured speaker.
The workshop will take place on September 19 from 12-1 pm and can be attended on MSU’s East Lansing Campus in room B105, Life Sciences building, or the Grand Rapids campus in room 220, Secchia Center.
It is the goal of the Clinical Ethics Interest Group to make the College of Human Medicine student body more aware of clinical ethical issues and help them understand which actions are considered right or wrong in a clinical setting. The Clinical Ethics Interest Group is sponsored by the Center for Ethics and Humanities in the Life Sciences.