New essay from Libby Bogdan-Lovis in ‘Narrative Inquiry in Bioethics’

Libby Bogdan-Lovis photo

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).

How do our loved ones make life-and-death medical decisions for us?

Speaking for the Dying: Life-and-Death Decisions in Intensive Care

Susan P Shapiro photo
Susan P. Shapiro, PhD

Event Flyer

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.

November 13 iconJoin 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.

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.

Announcing the Fall 2019 Bioethics Brownbag & Webinar Series

Green brownbag/webinar iconThe 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.

Fall 2019 Series Flyer

Oct 16 calendar iconSpinal 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.

Nov 13 calendar iconSpeaking 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.

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? Every lecture is recorded and posted for viewing in our archive. If you’d like to receive a reminder before each lecture, please subscribe to our mailing list.

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.

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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.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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Dr. Eijkholt presents at Upper Great Lakes Palliative Care & Hospice Conference

Marleen Eijkholt photoCenter 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.

Bioethics for Breakfast: Charlie Gard and Solomon’s Dilemma: What are the limits of parental medical decision making?

Bioethics for Breakfast Seminars in Medicine, Law and SocietyHonorable Laura Baird, JD, and Marleen Eijkholt, JD, PhD, presented at the Bioethics for Breakfast event on September 28, 2017, offering perspective and insight on the topic, “Charlie Gard and Solomon’s Dilemma: What are the limits of parental medical decision making?”

Charlie Gard’s tragic life and death came to light in a UK case that garnered considerable worldwide media attention in July. To recall the basic medical details of the case, Charlie Gard suffered from an extremely rare mitochondrial DNA depletion syndrome (infantile onset encephalomyopathy). This results in a gradual weakening of all the muscles in the body, including the lungs, which is why Charlie had his life sustained by a ventilator since October of 2016 (he had been born in early August). In addition, he suffered multiple seizures in late 2016, which resulted in brain damage. In early March of 2017, Charlie’s doctors recommended the removal of life-support and that he be allowed to die. In their judgment nothing more could be done in Charlie’s best interest, as his brain and muscle damage were irreversible. His parents rejected the hospital’s recommendations. The parents had located Dr. Hirano at Columbia University, after surfing the web in late 2016, whose primary area of research was mitochondrial depletion syndrome. Dr. Hirano was prepared to offer an experimental treatment called nucleoside therapy, which had yielded some marginal benefit for children with a condition similar—but not genetically identical—to Charlie’s condition. Given Charlie’s massive brain damage, it was unclear whether he could feel any pain. What were Charlie’s best interests? Was that a judgment that only parents had an ultimate right to make? And what are the ethical obligations of physicians in cases such as this?

The discussion started with this case, but other cases were introduced that raised similar issues.

Honorable Laura Baird, JD
Judge, Ingham County Circuit Court
Laura Baird is an Ingham County Circuit Court Judge serving in the Family Division, where they decide child custody as well as related domestic issues, abuse and neglect, delinquency, paternity, name changes, guardianships, and parental consent waivers. Much of her professional life has been devoted to children and their families and trying to find the best outcomes for them. Prior to joining the Ingham County Circuit Court in 2001, Judge Baird served as a State Representative from 1995-2000 and participated in the enactment of the Family Court Act. Judge Baird and her husband are parents of three children; their middle child was injured at birth and rendered severely disabled, which caused them to experience many interfaces with pediatric medical care.

Marleen Eijkholt, JD, PhD
Assistant Professor, Center for Ethics and Humanities in the Life Sciences and Department of Obstetrics, Gynecology and Reproductive Biology, Michigan State University College of Human Medicine
Clinical Ethics Consultant, Spectrum Health System
Marleen 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 stem cell research for spinal cord injury, deep brain stimulation, experimental treatments, placebos, and reproductive rights. 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. Marleen also contributes her expertise to the College of Human Medicine’s Shared Discovery Curriculum.

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.

Medicine’s Collusion with False Hopes: Rights to try, false hope, and the spine of the profession

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

By Marleen Eijkholt, JD, PhD

Imagine your loved one is dying. You have heard about an intervention out there, somewhere, that could help—you think. Not trying this intervention for and on your loved one would seem insane, as who knows, there could be a chance for a cure. Without trying it, your loved one’s death is certain. But by trying it—who knows—this intervention might be the miracle for your beloved. Why not try?

Though death ultimately takes all, most of us resist a final exit for both our loved ones and ourselves. Pursuits to forestall death can take the shape of family’s quests for experimental treatments, like in the Charlie Gard case, or they can come by insisting on a “full code” for a terminally ill loved one who is on their deathbed. This rescue impulse (by unbridled hope) encourages health care professionals as well to marshal all available resources in attempts to circumvent the inevitable.

Where “right to try” creates false hope, I submit, however, that that the health care profession (HCP) has an obligation to avoid collaborating in, participating, propagating or augmenting false hope. By not speaking up against such requests, health care providers precipitate a harm, i.e., the false hope harm (FHH). As such, the HCP should show courage, and show spine to resist more broadly unreasonable “rights” to try.

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Image description: an illustration depicts a white whale above a sea of orange waves. The whale is in a net that is being held up by orange birds. The background is blue. Image source: Matthias Töpfer/Flickr Creative Commons

I call for an active stance from the HCP against populist legislative initiatives, such as the latest U.S. Senate’s “right to try” bill. In the same way, I call for an active stance against unrealistic patient and family requests for rights to try, including resuscitative efforts in terminally ill patients or other demands for non-beneficial treatments. My position thus supports the providers’ prudent approach in the tragic Charlie Gard case, as described at the end of this post. The FHH can best be countered by courageous advocacy from the profession.

Earlier last month, the U.S. Senate passed a “right to try” bill, and if the House approves this legislation, the bill would allow terminally ill individuals to access experimental drugs not yet available on the regular market. Once a drug has passed Phase I drug testing, an individual could petition the pharmaceutical company for access to that experimental drug. This bill also provides protection for pharmaceutical firms. The legislation restricts the FDA from using right-to-try-related adverse outcomes in determining a drug’s safety. Accordingly, the bill limits “penalizing” pharmaceutical companies for their “generosity” in offering access.

A discouraging stance against “right to try” legislation is tricky. It is telling that “right to try” legislation has been dubbed “feel good” legislation, and thirty-nine states already have such legislation, including Michigan. Although there are proponents of these laws, I contend that these laws are “rhetorical pleasers” more harmful than beneficial. Criticism directed at “right to try” legislation focuses on several concerns, including its potential to undermine the clinical trial system and the belief that ultimately such laws only serve the elite. Some critics address false harm arguments, although these concerns are mostly different from mine. Critics argue that the legislation creates false hope, because pharmaceutical companies are less than eager to share their innovative pharmaceuticals, and are afraid of right-to-try-associated risks and harms that might lead to scientific and drug development setbacks. Patients, therefore, most often are unable to obtain access to the medications, so their hope for a “miracle drug” is in fact unfulfilled. Without actionable pathways, patient access cannot be guaranteed. (Indeed, in Michigan, Bridge Magazine suggests that the legislation has failed to change the status quo, and no one has sought access.)

My proposal that the HCP should stand up against unreasonable rights to try comes from my belief that these laws create FHH instead of real benefit. “Right to try” legislation generates false hope as the sought after experimental interventions are unlikely to benefit the patient. Although the legislation requires the drug to have passed Phase I clinical trial safety testing, this measure does not amount to a guarantee that the medication offers benefit. A Phase I clinical trial is safety focused, conducted in a very controlled environment, and in fact many treatments fail to demonstrate benefit outside that controlled environment.

The federal legislation is therefore an even more troublesome example of “feel good” legislation, as it propagates and augments FHH. It endorses the idea that pursing experimental treatment is both feasible and reasonable. Equally, it supports the notion that as long as one has the means, one should have access to try. Most importantly, by limiting FDA oversight, it undermines safeguards and trust in the system, and creates more room for FHH, giving pharmaceutical companies nearly a free reign.

Standing up to false hope is painfully hard, especially in the face of persuasive, emotionally vivid stories. Who would want to deny anyone hope for a miracle? Charlie Gard’s parents wanted to try a new treatment for their son, but their providers refused access. While their son was tragically dying, they were helpless to avert the inevitable. They heard about a treatment in the U.S. and appealed for access. But the UK doctors refused to endorse their appeal and the Court eventually prevented Charlie Gard’s parents from taking their son to the U.S. for treatment. A compassionate intuition could be: provided Charlie did not feel pain, why would there be anything wrong with them pursing this treatment in the U.S.? His parents had sufficient funds to cover related costs, so their pursuit would not further tax the social system. Experts suggested that there was a zero percent chance of health benefits for Charlie, but who can really know zero percent if you haven’t tried? We can never exclude miracles, can we? Even though this drug was not past Phase I, it had shown marginal benefit in other kids with illness that were related to Charlie’s, so safety wasn’t hard to prove.

I propose that if providers would have allowed Charlie to leave for the U.S., their endorsement would have exploited vulnerable individuals; they would have collaborated in FHH. The providers took the right and courageous action. Not speaking out against FHH passively supports initiatives that are more harmful than beneficial, and speaking out requires an active positioning of individual providers—optimally supported by the larger body of HCPs. I submit that this should extend to participating in requests for non-beneficial treatment requests like resuscitative efforts on dying patients. The medical profession rests on elements of trust, guidance, expertise and collaboration. Absent health care providers’ courage to deny treatment, we are doomed to see a further erosion of that profession. Without provider action against “right to try,” under legislation or requests in the clinic, medicine is at risk of further drifting into consumerist medicine, where money, fear, and privilege turn health care (and providers) into hostages of patient demands.

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Marleen Eijkholt is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Obstetrics, Gynecology and Reproductive Biology in the Michigan State University College of Human Medicine. Dr. Eijkholt is also a Clinical Ethics Consultant at Spectrum Health System.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 5, 2017. 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.

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Assisted Suicide’s Moral Hostages

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

By Tom Tomlinson, PhD

This isn’t exactly news, but some of you may remember a ripple of controversy surrounding a proposal before the Dutch legislature to legalize assisted suicide (AS) for people over 75 who meet certain other conditions, as reported in October in The New York Times.

I was reminded of it in December, when I stumbled over an item in the UK’s Daily Mirror. (Yes, I’m an avid follower of British tabloids.) The item features a video interview with a 65-year-old man with multiple sclerosis who explains why he would want this option as he becomes more disabled by his MS. He complains he’s losing sight in both eyes, and has difficulty reading or writing. As he loses his independence, he finds it more difficult to be happy with his life. “Where are all the things that make life a pleasure, besides the people that I love?” he asks. “They’re all gone, one-by-one they’ve been stripped away…. I don’t see the point of waiting until one is a virtual corpse that simply breathes.”

Now of course assisted suicide for terminally ill patients is itself a controversial topic, although majorities support it in the U.S., Great Britain, and Western Europe. One can expect that a proposal to expand AS to those who have a collection of chronic and variously disabling conditions just by virtue of being old will be even more controversial, and indeed vigorous opposition is expected in the Netherlands, and the adoption of the proposed legislation is far from certain.

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Image description: this map shows the legal status of Physician Assisted Suicide (PAS) and Voluntary Active Euthanasia (VAE) around the world. The map is a project of the Kennedy Institute of Ethics at Georgetown University. Visit the map on the web to explore its interactive features or to view a text version.

Speaking as a gradually disintegrating 71-year old, here’s a tentative defense. It starts with remembering what the Stoic Seneca taught. There is no need to fear death, since once you are dead there is no you to be afraid or to suffer. It’s the dying that we should fear—which is to say, the living we experience before we are finally released by death.

So if AS is justified for those who are dying from a terminal illness, it is because the quality of the life that remains has become intolerable for that person. But the terminally ill aren’t the only ones who struggle with losses to their capacities and their ability to find enjoyment and meaning in the life they are living. The old may well suffer the same kinds of losses as the terminally ill, as a host of chronic but not (yet) fatal conditions chip away at what before could be taken for granted, as friends and family die or move away and the social world shrinks, as the future begins to lose its allure, and there is nothing more in particular we want to achieve or do. “Dear World, I am leaving because I am bored. I feel I have lived long enough,” read George Sanders’ suicide note. A flamboyant actor, Sanders may have wanted his last lines to be good ones. But there was a lot more to the story. Sanders had suffered many losses before his death, which may happen to many of us in our later years. Under some perhaps narrow conditions, why shouldn’t we have the option of AS?

A common reply to this argument is that killing yourself is an awfully extreme solution to such problems, many of which could be ameliorated in other ways: better, more available primary and palliative care, assistive devices, meals on wheels, age-appropriate social activities and networks, visiting nurses and social workers, etc., etc. Once all this is provided, the need for AS will evaporate.

Now these are all fine options to be pursued in the individual case—when they are in fact available. But too often, these alternatives are used as reasons to not permit the option at all—as an argument against a policy allowing AS.

But when they are not readily available to all, or are not effective in the individual case, those who after due consideration believe that AS would serve their interests become moral hostages to an ideal world: a world where every deeply felt need motivating a desire for AS can be met in some other way. When we’re fixated on the ideal, the person in front of us is sacrificed to our vision of a better world. Paradoxically, the real world becomes a worse place as a result.

So I think this style of moral argument is deeply problematic. And assisted suicide is not the only context in which it’s found. For example, parents of children with familial short stature may want to use human growth hormone for children so their child may grow to something closer to the average height, and perhaps avoid the real social disadvantages short people face (men especially). Now there may be lots of good reasons to object to this treatment—e.g., it’s expensive, it is a crapshoot whether it will increase height by any significant amount, etc. But this use of growth hormone is also opposed on the grounds that what really needs to change are discriminatory social attitudes toward very short persons. By all means, let’s work on that. But in the meantime, what about this kid?

Another moral hostage, as we await the Millennium.

tomlinson-crop-2016Tom Tomlinson, PhD, is Director of the Center for Ethics and Humanities in the Life Sciences in the 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, February 9, 2017. 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.

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Rights and Responsibilities at the End of Life

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

By Hannah Giunta, MPH, PhD 

Questions about end-of-life care are always vexing, but a recent article in U.S. News and World Report suggests that cancer patients continue to receive useless but harmful treatments at the end of life (Thompson, 2016). A new research study presented at the American Society of Clinical Oncology’s (ASCO’s) annual meeting revealed that a big part of the problem comes from a lack of meaningful dialogue among physicians, patients, and family members. Indeed, in many cases, serious discussions never take place. Dr. Ronald Chen, a radiation oncologist at the University of North Carolina’s Lineberger Comprehensive Cancer Center, and his colleagues examined de-identified claims data from patients younger than 65 with advanced cancer who died between 2007 and 2014 and were enrolled in Blue Cross Blue Shield insurance plans. They found that nearly three-quarters of patients with a variety of advanced cancers received aggressive care within the last 30 days of life—a proportion that remains virtually unchanged even after the ASCO issued warnings to physicians about the harm of such treatments in 2012 (Begley, 2016). Unfortunately, these treatments are not only unlikely to help but can be quite harmful. Andrew Epstein, an ASCO palliative care expert, explains, “Much more often than not, these types of care at the end of life are not helpful, and they are emotionally and physically harmful for patients, and emotionally harmful to the patients’ loved ones” (Thompson, 2016).

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Image description: an image of Rosie the Riveter is combined with a pink ribbon representing breast cancer awareness, and text that reads “we can do it.” Image source: Flickr user Beverly & Pack.

The ASCO’s “Choosing Wisely” guidelines encourage physicians not to perform invasive procedures or try last-ditch chemotherapy and radiation regimens when patients are already significantly debilitated and unlikely to benefit. But, although the ASCO has encouraged end-of-life discussions, experts on end-of-life care worry about evidence that most terminally ill patients don’t even know they are in their final days. A separate study recently published in the Journal of Clinical Oncology found that only 7% of patients who had scans, knew their cancer was quickly progressing, and discussed their prognosis with a physician acknowledged that they likely had mere months to live. Physicians frequently used overly optimistic language, and patients did not press their physicians for more information or explanation. As Holly Prigerson, an expert on end-of-life care at Weill Cornell Medicine, suggested, oncologists are generally “very reluctant to put a number on how long patients to have live” (Epstein et al., 2016). This reluctance likely stems from a fear of being characterized as overly pessimistic or as giving up on patients too quickly. Thus, we are left with the question of what to do with the results of these two studies. Why are physicians and patients so reluctant to discuss end-of-life choices and care options?

I believe there are two primary issues at play here. First, there appears to be unwillingness on the part of physicians to broach difficult subjects. It is especially problematic that despite general professional agreement about the need for less aggressive end-of-life care physicians routinely fail to have frank discussions with patients and steer them toward appropriate palliative options. I surmise that part of what is going on here has to do with the difficulty of changing perspectives. Few physicians would voice disapproval for palliative care in theory, but it is difficult to give up the fight and focus only on palliation. The medical community wants to “beat” cancer, not admit defeat. The culture of cancer has been shaped by a warrior myth whereby giving up on a cure is unacceptable. The only acceptable response is to fight the cancer to the very end, even if that fight requires significant sacrifices. No doubt, cancer culture is fueled by the general public’s expectations as well (Page, 2015); but, since physicians ultimately control access to aggressive care, they must take a large share of responsibility for the warrior ethos. Physicians would have great social power if they presented a united front in favor of palliative care.

Cancer Warrior results screen shot
Image description: a screen shot of search engine results for “cancer warrior” shows a glimpse of the socially acceptable “warrior” culture.

But, it is not enough for physicians to endorse and openly encourage palliative care. Secondly, we must consider what rights and responsibilities patients have when faced with critical illness. Too much of the discussion about end-of-life care to date has focused exclusively on the rights of patients to seek last-ditch treatment options. There is less discussion about patients’ right to receive comprehensive hospice and palliative care, and there is absolutely no discussion about the responsibilities patients have when they exercise their rights. It seems obvious that patients have a right to understand their prognosis and make informed decisions, but what of their responsibilities? Patients have a concomitant responsibility to be informed consumers when they seek care in accordance with their individual capacities. Part of becoming an informed consumer is recognizing that there will come a time in life when modern medicine no longer has an answer. That time may be sooner or later than a patient anticipates, but it will assuredly come. Preparation for these decisions is a patient’s responsibility. I would argue that current social pressures on patients to be so-called warriors who give up everything for a cure—no matter how unlikely or far-fetched said cure is—both limit individual choice (Page, 2015) and simultaneously allow patients not to discharge their responsibilities as informed consumers.

Remedying current end-of-life care challenges requires changes in attitude and behavior on the part of physicians and patients. Physicians have a professional responsibility to educate themselves and to offer patients reasonable treatment options—options that will most likely be palliative rather than curative. But, patients also have a role. They have a responsibility to think about end-of-life decisions. As human beings, we know our time is inevitably finite. We have a responsibility to prepare for end-of-life choices in the same way that we make plans for dependents, write wills, and purchase life insurance. Now, we just have to find ways to change behavior. So, to start the discussion, I am asking, “How can we collectively speak out against the current cancer warrior culture and help physicians and patients appreciate their rights and responsibilities?”

hannah-giunta-100Hannah Giunta
 is an eighth year DO-PhD student at Michigan State University. She received her MPH in May 2015 and her philosophy PhD in May 2016. She is currently completing her medical school clerkships.

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Two Brownbags in November: learn about UK health policy, decision-making in pediatric oncology

bbag-icon-decNHS reforms: What is the Reality of Clinician-Led Purchasing of Health Services?

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In 1948 the National Health Service was established as a tax funded health service available to all, free at the point of access regardless of the ability to pay. The reality in the second decade of the 21st century is that with the ageing population and the concomitant increasing burden of disease and social care needs, together with the development of advanced technological treatment modalities, the cost burden is increasing rapidly. In 2012 the UK government introduced reforms which were based on the premise that family physicians, because they were closer to their patient, would know what their patient health care needs were and would therefore be able to commission health care more efficiently. This would all take place within an economic environment where downward pressure on costs was the norm. Dr. Meakin will describe the reforms and examine the reality of these reforms from the perspective of a practicing family physician in the UK.

nov-4-bbagJoin us for Richard Meakin’s lecture on Tuesday, November 4, 2014 from noon till 1 pm in person or online.

Richard Meakin, MD, is Clinical Senior Lecturer in the Department of Primary Care & Population Health at University College London (UCL). He is also a partner in a rural family practice north of London. After graduating from St. Mary’s Hospital Medical School, University of London he went on to train as a Family Physician. He gained a MSc in Family Medicine and a Doctorate. He has a long-standing interest in Medical Humanities and Bioethics and served as founding President of the UK Association for Medical Humanities (2002-2005) and was a member of council until 2012. He is a fellow of the Higher Education Academy and won the Cancer Research Campaign Medical Education Prize in 1998. Currently, when not seeing patients, he is predominantly involved in undergraduate and postgraduate education in family medicine at UCL.

bbag-icon-decDecision-making in Pediatric Oncology: Who Really Decides?

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Edit 10/30/2014: This lecture has been canceled.

Informed consent is a pillar of patient autonomy in medicine. In the pediatric world, the informed consent process often involves not only parental consent for treatment but a minor’s assent as well. However, a true informed consent process allows a family or patient to refuse a proposed course of treatment—but is this really true in pediatrics? Is a family allowed to forgo a potentially lifesaving therapy for their child if the chance of survival with the treatment is excellent? Should the prognosis matter? Should the age of the child matter? This talk will discuss challenges of decision making in children with cancer including a discussion on the ability of a family or minor to refuse potentially life-saving treatments.

nov-12-bbag-canceled

Join us for Bradd Hemker’s lecture on Wednesday, November 12, 2014 from noon till 1 pm in person or online.

Bradd Hemker, MD, is an assistant professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University. He practices Pediatric Hematology/Oncology with a special interest in Palliative Medicine and Bioethics.

In person: These lectures 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? View these webinars and others as archived recordings.