March webinar to address pain as a social construct

bbag-blog-image-logoPain But No Gain: Pain as a Problematic and Useless Concept?

Event Flyer

References to the human experience of “pain” are common, but those references are often ambiguous and vague. Such ambiguity creates conceptual and practical challenges, especially in the work of clinical ethics consultation. Conceptual challenges arise, for example, from the distinction between pain and suffering. Practical challenges arise from tensions between objective and subjective components of pain, and clinical ethical challenges arise in cases like Charlie Gard’s. Here, on the one hand, the court argued that Charlie was in such extreme pain and suffering, he should be allowed to die. Alternatively, others stated that we could not truly know about the experience of his pain, and that treatment therefore should be made available. While pain is a relevant clinical problem, it is also a social construct shaped by culture, environment and gender. These distinctions however get lost in a simple “pain” reference. With several clinical ethics scenarios, Dr. Eijkholt will ask if references to pain help us with anything, or if we should perhaps abandon pain as a “useless concept.”

March 14 calendar iconJoin us for Dr. Eijkholt’s lecture on Wednesday, March 14, 2018 from noon until 1 pm in person or online.

Marleen Eijkholt, JD, PhD, is and Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Obstetrics, Gynecology and Reproductive Biology at the Michigan State University College of Human Medicine. Dr. Eijkholt focuses on a wide range of Ethical, Legal and Social Implications (ELSI) in health care ethics, including neurotechnology, reproductive medicine, clinical medicine and clinical research. Her work is eclectic like her background, including projects on pain, placebos, and reproductive rights, or deep brain stimulation, and experimental treatments like stem cells. She combines ethical, legal and philosophical theories in her research and scholarship. Additionally, she engages these in her professional life as an ethics consultant at Spectrum Health System. Dr. Eijkholt also contributes her expertise to the College of Human Medicine’s Shared Discovery Curriculum.

In person: This lecture will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? All webinars are recorded! Visit our archive of recorded lecturesTo receive reminders before each webinar, please subscribe to our mailing list.

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Episode 7: ‘Imaging and Imagining Illness’ with Devan and Darian Stahl

No Easy Answers in Bioethics logoEpisode 7 of No Easy Answers in Bioethics is now available! This episode features guests Devan Stahl, Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development, and Darian Goldin Stahl, artist and printmaker. This episode delves into the intersection of fine art, illness, disability, and self-identity. The recently released book Imaging and Imagining Illness: Becoming Whole in a Broken Body began as a collaboration between sisters Devan and Darian, one with personal origins. The edited volume examines the impact of medical imaging technologies on patients and our wider culture. In this episode, they discuss Darian’s artistic process, how audiences have reacted to the artwork, and how they came to invite other scholars to build on their work.

Ways to Listen

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 transcript available.

About: No Easy Answers in Bioethics is a 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.

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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).

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Dr. Cabrera and co-authors published in ‘European Journal of Neurosurgery’

Laura Cabrera photoCenter Assistant Professor Dr. Laura Cabrera is first author of the article “The re-emergence of psychiatric neurosurgery: insights from a cross-national study of newspaper and magazine coverage,” published in the March 2018 issue of Acta Neurochirurgica, The European Journal of Neurosurgery. The work of Dr. Cabrera and co-authors Merlin Bittlinger, Hayami Lou, Sabine Müller, and Judy Illes was supported by their European Research Area Network (ERA-NET) NEURON project “Media Coverage of Psychiatric Neurosurgery: Cross-national Investigations of Public Reactions and Attitudes.”

Abstract: Background: Surgical approaches to treat psychiatric disorders have made a comeback. News media plays an essential role in exposing the public to trends in health care such as the re-emergence of therapeutic interventions in psychiatric neurosurgery that were set aside for decades, and in shaping attitudes and acceptance to them. Method: We conducted an analysis of media articles covering all types of psychiatric neurosurgery published in Canada, USA, Germany, and Spain between the years 1960 and 2015. We applied both quantitative and qualitative methods to elucidate patterns of reporting for conditions, themes and tone, across geographic regions, time, and for type of intervention. Results: Coverage of psychiatric neurosurgery has surged since 2001 and is largely consistent across the countries examined. It focuses on depression and deep brain stimulation, and is explicit about historical context. The tone of coverage becomes more positive for Canada, USA and Spain over time; the tone of coverage from Germany remains cautious. Identity and privacy are among the few ethical and philosophical issues raised, notably in the German press. Conclusions: The focused and optimistic attention to contemporary psychiatric neurosurgery in the media, but inattention to ethical issues, places an extra burden on functional neurosurgeons, psychiatrists, and other frontline health professionals to attend to queries from patients and policy makers about the full range of relevant emergent and emerging interventions and the mental health issues to which they may beneficially apply.

The full text is available online through Springer Nature (MSU Library or other institutional access may be required to view this article).

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Article from Dr. Stahl in ‘Journal of the Christian Institute on Disability’

Devan Stahl photoCenter Assistant Professor Dr. Devan Stahl and co-author John F. Kilner (Trinity International University) have an article in a special bioethics themed issue of the Journal of the Christian Institute on Disability, volume 6. Their article, “The Image of God, Bioethics, and Persons with Profound Intellectual Disabilities,” is available as a free download on the journal’s website.

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Dr. Tomlinson and co-authors published in ‘European Journal of Human Genetics’

Tom Tomlinson photoCenter Director and Professor Dr. Tom Tomlinson is first author of the article “Effect of deliberation on the public’s attitudes toward consent policies for biobank research,” published in the February 2018 issue of the European Journal of Human Genetics. The work of Dr. Tomlinson and co-authors Raymond G. De Vries, H. Myra Kim, Linda Gordon, Kerry A. Ryan, Chris D. Krenz, Scott Jewell, and Scott Y. H. Kim was supported by the NIH-funded project “Public Preferences for Addressing Donors’ Moral Concerns about Biobank Research.”

Abstract: In this study, we evaluate the effect of education and deliberation on the willingness of members of the public to donate tissue to biobank research and on their attitudes regarding various biobank consent policies. Participants were randomly assigned to a democratic deliberation (DD) group, an education group that received only written materials, and a control group. Participants completed a survey before the deliberation and two surveys post-deliberation: one on (or just after) the deliberation day, and one 4 weeks later. Subjects were asked to rate 5 biobank consent policies as acceptable (or not) and to identify the best and worst policies. Analyses compared acceptability of different policy options and changes in attitudes across the three groups. After deliberation, subjects in the DD group were less likely to find broad consent (defined here as consent for the use of donations in an unspecified range of future research studies, subject to content and process restrictions) and study-by-study consent acceptable. The DD group was also significantly less likely to endorse broad consent as the best policy (OR = 0.34), and more likely to prefer alternative consent options. These results raise ethical challenges to the current widespread reliance on broad consent in biobank research, but do not support study-by-study consent.

The full text is available online through Springer Nature (MSU Library or other institutional access may be required to view this article).

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Can Big Data and AI Improve End-of-Life Care?

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Tom Tomlinson, PhD

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?

The study’s authors are particularly hopeful that the use of this model will prompt more timely use of palliative care services, and discourage overuse of chemotherapy, hospitalization, and admission to intensive care units in the last months of life—all well-documented problems in the care of terminally ill people, especially those dying of cancer. So this is a potentially very significant use of “big data” AI research methods to address major challenges in end-of-life care.

But making real progress toward these goals will take a lot more than this model can deliver.


Image description: A graphic on a blue gradient background shows the silhouette of an individual in the foreground containing colorful computer motherboard graphics. In the background are silhouettes of twelve more individuals standing in a line and containing black and white computer motherboard graphics. Image source: Maziani Sabudin/Flickr Creative Commons.

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 photoTom 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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Article from Dr. Cabrera in February issue of ‘The Lancet Neurology’

Laura Cabrera photoCenter Assistant Professor Dr. Laura Cabrera and co-author Judy Illes (University of British Columbia) have a comment article in the February 2018 issue of The Lancet Neurology. Their article is titled “Balancing ethics and care in disorders of consciousness.”

Summary: Neuromodulatory interventions that rely on the premise that stimulation activates or promotes brain circuit signals are being applied to a wide range of therapeutic targets in neurological and psychiatric disorders. The numbers of patients with whom these interventions are being tested, the range of approaches, and the variety of methods are all on the rise. Paralleling these trends are the increasing numbers of countries doing clinical trials, and the coverage of them in the press.  

The full text is available online through The Lancet (MSU Library or other institutional access may be required to view this article).

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