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.
The Center for Ethics and Humanities in the Life Sciences at Michigan State University is proud to announce the 2019-2020 Bioethics Brownbag & Webinar Series. The series will begin on October 16, 2019. You are invited to join us in person or watch live online from anywhere in the world! Information about the fall series is listed below. Please visit our website for more details, including the full description and speaker bio for each event.
Spinal Cord Injury: Everything You Wanted to Know But Were Afraid to Ask Wednesday, October 16, 2019
There are many dimensions to a happy and healthy life, and everyone would agree that life is complicated. But when multiplied by a spinal cord injury (SCI), the complexity of life can be off the charts—what we used to take for granted becomes a monumental challenge. This talk with explore life with SCI from a first-person perspective.
Mark Van Linden, MSA, is President of Adversity Solutions LLC and a spinal cord injury patient since 2009.
Speaking for the Dying: Life-and-Death Decisions in Intensive Care Wednesday, November 13, 2019
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?
Susan P. Shapiro, PhD, is a Research Professor at the American Bar Foundation.
In person: These lectures will take place from 12:00-1:00 PM in C102 (Patenge Room) East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.
Roi Livne, PhD, presented at the Bioethics for Breakfast event on October 4, 2018, offering perspective and insight on the topic “Values at the End of Life: The Logic of Palliative Care.” Leonard Fleck, PhD, moderated this session.
Over the past forty years, “the end of life” has become the center of extensive economic, policy, ethical, and medical discussions. Health economists measure and evaluate its cost; ethicists debate the morality of various approaches to “end-of-life care”; policymakers ponder alternative “end of life”-related policies; and clinicians apply a specialized approach (hospice and palliative care) to treat patients whom they diagnose as being at “the end of life.” How are those many-faceted conversations emblematic of this particular moment in history? How are the limits of what can be done, both medically and financially, to prolong life communicated to severely ill patients and families? Dr. Livne’s analysis drew from a combination of historical and ethnographic work conducted with palliative care clinicians in three California hospitals.
Roi Livne Roi Livne is an Assistant Professor in the Department of Sociology at the University of Michigan. He received his PhD in sociology from the University of California, Berkeley in 2016. An economic sociologist at heart, he studies everyday economic life and its somewhat awkward intersections with morality. His book, Values at the End of Life: The Logic of Palliative Care is forthcoming this February in Harvard University Press. The book develops a historical and ethnographic account of the deeply personal relationships between financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions in American hospitals. Livne’s other research is on the techno-politics of sovereign debt management. He has published in the American Sociological Review and Socio-Economic Review.
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.
On April 30, Center Assistant Professor Dr. Devan Stahl gave a plenary address at the State of Wisconsin Association of Neonatal Nurses Annual Education Conference, titled “Palliative Care and End of Life Ethics in the NICU.” Using case studies, she discussed the ethical and medical complexities surrounding decisions for the treatment of severely ill infants, strategies for interacting with families who request inappropriate or non-beneficial treatment for their child, and the obligations of care providers to protect the best interests of infants. 150 nurses from Wisconsin and surrounding states were in attendance.
Center 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).
A recently reported study claims to more accurately predict how much longer patients will live. Researchers at Stanford University assigned a neural network computer the task of training itself to develop an artificial intelligence model that would predict if a patient would die within 3-12 months of any given date. The computer trained on the EMR records of 177,011 Stanford patients, 12,587 of whom had a recorded date of death. The model was validated and tested on another 44,273 patient records. You can find the wonky details here.
The model can predict with 90% accuracy whether a patient will die within the window.
Now this is a lot better than individual physicians typically do. It’s not just that such predictions are fraught with uncertainty, given how many complex, interacting factors are at work that only a computer can handle. If uncertainty were the only factor, one would expect physicians’ prognostic errors to be randomly distributed. But they are not. Clinicians overwhelmingly err on the optimistic side, so the pessimists among them turn out to be right more often.
The study takes accurately predicting death to be a straightforwardly useful thing. It gives patients, families and clinicians more reliable, trustworthy information that is of momentous significance, better informing critical questions. Will I be around for my birthday? Is it time to get palliative or hospice care involved?
But making real progress toward these goals will take a lot more than this model can deliver.
The first question is how it could inform decisions about what to do next. The limitation here is that the model uses events from my medical history occurring prior to the time it’s asked to predict my survival. Perhaps the decision I’m facing is whether to go for another round of chemotherapy for metastatic cancer; or whether instead to enter a Phase 3 clinical trial for a new therapeutic agent. The question (one might think) is what each option will add to my life expectancy.
Now if the training database had some number of patients who took that particular chemotherapy option, then that factor would have somehow been accounted for when the computer built the model. Assuming the model reliably predicted the mortality of those earlier patients, all we’d need to do is add that factor to my medical record as a hypothetical, run the model again, and see whether the prognosis changed.
But is there something about the chemotherapy being offered that is different than the regimens on which the computer trained? Then the model will not be able to assess the significance of that difference for the patient’s survival. Obviously, this limitation will be even more radical for the experimental treatment option. So in the individual case, the model’s helpfulness in making prospective treatment decisions could be quite limited. It would have to be supplemented, or even supplanted, by old-fashioned clinical judgment, or alternative algorithmic prognostic tools.
This may be one reason the study authors imagine a different use: identify patients with 3-12 months life expectancy and refer them for a palliative care consultation. The idea is to push against the tendency already noted for physicians to wait too long in making palliative care or hospice referrals. Assuming the model is running all the time in the background, it could trigger an alert to the attending physician, or even an automatic palliative care referral for all those the model flagged.
Now, in my ethics consultation experience, getting an appropriate palliative care or hospice referral only one month preceding death would be a stunning accomplishment, let alone three months prior. But the key word here is “appropriate,” since the need for palliative care is not dictated by life-expectancy alone, but more importantly, by symptoms. Not every patient with a projected life expectancy between 3 and 12 months will be suffering from symptoms requiring palliative care expertise to manage. Automatic referrals requiring palliative care evaluations could overwhelm thinly-staffed palliative care services, drawing time and resources away from patients in greater need.
Part of the problem here is the imprecision of the model, and the effects this may have on patient and provider acceptance of the results. A 90% chance of death within 3-12 months sounds ominous, but it leaves plenty of wiggle-room for unrealistic optimism: lots of patients will be confident that they are going to fall at the further end of that range, or that they will be among the 10% of cases the model got wrong altogether. And it’s not just patients who will be so affected. Their treating physicians will also be reluctant to conclude that there is nothing left to do, and that everything they did to the patient before has been in vain. Patients aren’t the only ones prone to denial.
And the nature of the AI-driven prognosis will make it more difficult to respond to patient skepticism with an explanation anyone can understand. As the authors point out, all we really know is that the model can predict within some range of probability. We don’t know why or how it’s done so. The best we can do is remove a feature of interest from the data (e.g., time since diagnosis), rerun the model, and see what effect it has on the probability for the patient’s prognosis. But the model offers no reasons to explain why there was a change, or why it was of any particular magnitude. The workings of Artificial Intelligence, in other words, are not always intelligible. Acceptable explanations will still be left to the clinician and their patient.
Tom Tomlinson, PhD, is Director and Professor in the Center for Ethics and Humanities in the Life Sciences, College of Human Medicine, 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 Thursday, March 8, 2018. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Center Assistant Professor Dr. Marleen Eijkholt recently traveled to Marquette, MI to present at the Upper Great Lakes Palliative Care & Hospice Conference, hosted by Lake Superior Life Care & Hospice.
The conference brought together a wide variety of providers, including home health and hospice providers. Dr Eijkholt’s presentations touched on two controversial areas, through a mix of practical case samples and some theory. Her first talk, “Ethical dilemmas in advance care planning–Mom isn’t herself,” sought to engage participants with the different advance care planning options in Michigan and throughout the U.S. The presentation explored the challenges that come with advance care planning instruments and their application. In Dr. Eijkholt’s second presentation, “Mom wants to die–Professional and personal ethical dilemmas at the end of life,” the participants discussed different end-of-life scenarios, patient perspectives, and wishes. The presentation and discussion also explored distinctions and strategies for dealing with patient requests at the end of life.
Published online on April 4, the article addresses whether a patient with advanced illness or incurable disease has a right not to “hear the bad news.” Drs. Stahl and Tomlinson write that this question “raises fundamental questions concerning patient autonomy and the duties of health-care professionals.”
The full text is available on the Nature Reviews Clinical Oncology website.
This post is a part of our Bioethics in the News series. For more information, click here.
By Leonard Fleck, PhD
In an essay in the New York Times (12/9/15) titled “Imagine a Medicare ‘Part Q’ for Quality at the End of Life,” Katy Butler tells the story of her father who suffered a devastating stroke at the age of 79. That was followed by additional strokes and vascular dementia that culminated in his death six and a half years later. She writes: “Ours is a story familiar to many families: shuttling my aged father to specialist after specialist, each focused on a single crumbling organ—his brain, his heart, his bladder, his colon, his eyes.” She goes on to write: “My father, and others like him, suffered because, at the tail end of life, Medicare continues to pay well for fix-it treatments focused unrealistically on cure and underpays for care and desperately needed home support.” Butler’s goal in writing this commentary is to advocate for a reversal of Medicare’s priorities: more emphasis on funding quality home care, quality primary care, and quality palliative care at the end of life rather than hospital-based or emergency room expensive, marginally effective life-prolonging but quality-of-life-diminishing curative efforts.
A similar story is told in another New York Times essay by Nina Bernstein (2014). She tells us about Mr. Joseph Andrey, 91 years old, beset with multiple chronic degenerative conditions, whose one wish was that he be allowed to die at home. The problem, however, was that multiple home care agencies refused to take him on as a home care patient because he was too complex a patient requiring too much care relative to the reimbursement they would receive from Medicare. Consequently, in the last two years of his life he endured multiple hospitalizations and nursing home placements that left him with a hospital-acquired sepsis and nursing home-acquired pressure sores. His daughter, who fought heroically to honor her father’s wishes, calculated that Medicare paid over a million dollars for “care” in the last two years of his life.
The story of Mr. Andrey is both sad and tragic. From a policy perspective we might think of him as an outlier, one of those rare anomalous cases that policies cannot accommodate. However, that would be a mistake. More than half of Medicare patients over age 85 have four or more incurable conditions, including what are described as “slowly fatal” conditions such as heart failure, emphysema, kidney failure, various advanced incurable cancers, and dementia. In 2014 roughly 6 million Medicare patients were over age 85. It strains the bounds of linguistic and ethical propriety to think of 3 million of these individuals as “outliers.”
I remind the reader that the major problem of health policy today is cost containment. Medicare is an inescapable focal point for that concern. In 2014 Medicare expenditures were about $640 billion. Over the ten-year period 2015-2024 projected Medicare expenditures are estimated to be $8.3 trillion. It is not as if all Medicare patients have extraordinary health needs. Rather, 5% of all Medicare patients account for 38% of total Medicare expenditures, roughly $256 billion in 2014 (National Institute for Health Care Management, 2012). If all those dollars were needed to address serious health needs, effectively restoring high quality life-years, a just society would have a presumptive ethical obligation to address those needs. But the stories of Mr. Andrey and Katy Butler’s father suggest that this is not often the case. Dr. Joanne Lynn, a veteran hospice physician, asks (no doubt in a frustrated tone of voice): “How can I get a $100,000 drug [for a terminal cancer patient] but I can’t get supper [for that same patient]?” She said that in the context of a federal budget sequestration that slashed spending on meals for seniors (Bernstein, 2014).
To return to Katy Butler, she is advocating for what she calls Medicare “Part Q” (for quality of life). Part Q would pay for a coordinated primary care team that would provide care in a patient’s home, what might be described as intense palliative and supportive care until that patient died. Such care would be provided for as long as two years prior to the death of a patient, most often with multiple slowly fatal medical conditions. To qualify for Medicare Part Q Butler says, “I would promise, upfront, to forgo medical treatments that evidence shows are outrageously expensive, not cost-effective, painful to endure, and likely to extend my life, if at all, by only months.” Medicare Part Q would be an option that patients would have to freely embrace. In spite of that qualification, it is easy to imagine death panel rhetoric being readily resurrected with the intent of scotching that option.
What we should note, however, is that under the Affordable Care Act the Obama Administration put in place three years ago a demonstration project under Medicare titled “Independent at Home.” About 8400 frail seniors with multiple chronic conditions are receiving customized home-based primary care, similar to what Katy Butler had in mind, except there is no requirement to forgo expensive and aggressive end of life care. Still, the goal of the program is to minimize use of emergency room and hospital services, thereby saving Medicare dollars. After one year the program has saved about $3100 per beneficiary.
I want to conclude with a provocative endorsement of Katy Butler’s Medicare Part Q. But I find it difficult to imagine what would motivate a substantial majority of Americans, likely within two years of dying, to forgo aggressive costly life-prolonging care (otherwise paid for by Medicare). Ms. Butler believes patients would vividly imagine the pain and suffering they could avoid for the sake of a dignified and peaceful death. But the sad reality is that most patients can imagine that pain and suffering but see it as something that can be endured for the sake of an indefinite gain in life expectancy, which is why so many cancer patients spend only the last week or two of their lives in hospice.
To correct for that distorted judgment I would offer a provocative addendum to Part Q, namely, that patients would receive 25% of whatever they saved the Medicare program. If they gave up a $100,000 cancer drug for their metastatic cancer, they would receive $25,000. Presumably another $25,000 or more of that savings would pay for intensive in-home palliative care and supportive social care. Physicians would have to be entrusted with responsibility for protecting the best medical interests of those patients, i.e., dissuading patients from inappropriately foregoing a necessary hospitalization that was congruent with a dignified dying process. Still, my critics might see this proposal as fundamentally ethically flawed, manipulating patients with a monetary offering so that they would give up some portion of their remaining life. But if medical research shows in some range of definable terminal circumstances that higher costs are associated with a worse quality of death, then that is ethically significant. Some research shows just that (See Zhang et al., 2009; De Jonge et al., 2014; Boling and Leff, 2014; Meier, 2015). If such economic incentives serve to nudge patients to make choices that are more congruent with their objective best interests near the end of life, and if those savings can be reallocated to higher priority (more just and more cost-effective) health care needs of the elderly, then this proposal deserves thoughtful consideration rather than rhetorical savaging.
For my physician readers I will conclude with this question: Would you be comfortable counseling patients likely in the last year of life regarding this option, i.e., being a bit more directive?
Leonard Fleck, PhD, is a Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Philosophy at Michigan State University. Dr. Fleck is the author of Just Caring: Health Care Rationing and Democratic Deliberation (Oxford University Press; 2009).
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 10, 2016. 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.
On January 16, 2015, Saginaw Valley State University held the 5th Annual Great Lakes Bay Collaborative Health Care Ethics Conference, “Ethical Issues in Palliative and End of Life Care: Where we are Today.” Center Director Dr. Tom Tomlinson was the keynote speaker, speaking on “Ethical Obstacles to Timely Palliative Care in Oncology.”