Episode 4 of No Easy Answers in Bioethics is now available! This episode features guests Dr. Guobin Cheng, Adjunct Associate Professor with the Center for Ethics and Associate Professor at Southeast University in China, and Center Director and Professor Dr. Tom Tomlinson. Freshly back in East Lansing from the annual meeting of the American Society for Bioethics and Humanities (ASBH) held in Kansas City, Missouri, they sat down together to discuss differences and similarities observed in American and Chinese bioethics. Based in part on work they presented at the ASBH meeting, they discuss specific case examples as they relate to patient autonomy, family and individual identity, and the patient’s right to know or right not to know diagnosis and prognosis.
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.
This post is a part of our Bioethics in the News series. For more information, click here.
By Tom Tomlinson, PhD
In a New York Times piece, Dr. Paul Kalanithi, chief neurosurgical resident at Stanford University, described his ambivalence about asking for his prognosis after being diagnosed with metastatic lung cancer.
He confessed to his professional uncertainty whether and how to share a grim prognosis with his own patients. On the one hand, most of them want to know—or at least say they do (Hagerty). On the other, prognosis is perilous when the range of possible outcomes is large, and one doesn’t want to dash hope prematurely.
But he couldn’t stop himself from asking his oncologist what his chances were, given the overall statistics for metastatic lung cancer (not good). She refused to do so. Much of the rest of his essay is a meditation on how to go forward in the face of that uncertainty.
I’m with his oncologist—at least in the short term. He was a young non-smoker with lung cancer—not the usual patient represented by the statistics. And he’d just been diagnosed. No way to know yet how he might respond to treatment. The statistics would provide no useful information to guide decisions—about his treatment, or about how to lead his life.
Withholding prognosis becomes more a problem further down the road, however, after trials of treatment have failed, and the range of survival prospects has shrunk. Certainly prognostic information becomes more relevant as disease advances. We know that cancer patients’ beliefs about prognosis affect their decisions about treatment—the more pessimistic they are, the less inclined they are to want aggressive treatment (Weeks 1998). Yet even with advanced disease, many patients continue to believe that more chemotherapy is going to cure their cancer (Weeks 2012). Finally, there is evidence that patients with advanced cancer too often receive non-palliative chemotherapy in the last weeks of their lives, along with further aggressive treatment in the ICU during their last admission, even with referral to palliative care (e.g., Gonsalves).
One has to wonder whether these dismaying trends are in part a product of misunderstanding—or misinformation—about prognosis.
If they aren’t being told, or told much too late, that is a problem. Surely patients with advanced terminal illnesses like cancer should be told their prognosis. A no-brainer in 2015. Without that information, they are likely to make decisions that make the time preceding their death more painful and traumatic than it could be. And now that the paternalists have gone the way of the dinosaur, the patient’s right to accurate information about their prognosis seems absolute and fundamental. QED.
But there’s a rub. When surveyed most people say both that they want to know; and that they want the doctor to first ask them whether they want to know (Hagerty). This ambivalence is accommodated by protocols for delivering bad news, such as SPIKES, which uniformly recommend that the patient first be asked (Baile). And according to one study of oncologists, almost half indicated that they shared prognosis only when the patient requested or allowed them to do so (Dougherty).
Which raises the question for this blog:
Do patients with advanced incurable illness have a right not to be told their prognosis?
Seems like an impertinent question. Surely the answer is “yes.” The patient’s right to autonomy is capacious. If it protects the right to know, by the same token it must protect the right to remain ignorant.
But is it really that simple?
Just to get the conversation started, consider the consequences of ignorance: the patient is more likely to make decisions about treatment that won’t in fact serve the patient’s values and goals. But surely, the freedom and the capacity to make decisions that serve my values and goals is what my right to autonomy with regard to my medical treatment most fundamentally protects, and which others are obliged to respect.
When I exercise my right to ignorance, then, I also impair my right to make decisions about my treatment, and I hamstring the obligations of others to protect and serve my capacity for autonomy with regard to my treatment.
The question for those around me now becomes: Which exercise of my autonomy is the most deserving of respect and protection? My refusal to hear the truth, perhaps from my fear of death and need to sustain my hope for cure? Or my ability to make informed decisions about treatment that serve my interests?
I’ll be very interested to hear what you think.
Baile WF, Buckman R, Lenzi R, et al. 2000. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 5(4):302-11
Clayton JM, Hancock K, Parker S. et al. 2008. Sustaining hope when communicating with terminally ill patients and their families: a systematic review. Psychooncology 17(7):641-59.
Dougherty and Hlubocky. 2008. What Are Terminally Ill Cancer Patients Told About Their Expected Deaths? A Study of Cancer Physicians’ Self-Reports of Prognosis Disclosure. JCO 26 (36): 5988-5993
Gonsalves WI, Tashi T, Krishnamurthy J., et al. 2011. Effect of palliative care services on the aggressiveness of end-of-life care in the Veteran’s Affairs cancer population. J Palliat Med. 14(11):1231-5.
Weeks JC, Catalano PJ, Cronin A, et al. 2012. Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer. NEJM 367: 1616-1625
Weeks JC, Cook EF, O’Day SJ, et. al. 1998. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 3;279(21):1709-14.
Tom Tomlinson, PhD, is Director of the Center for Ethics and Humanities in the Life Sciences and a Professor in the Department of Philosophy at Michigan State University.
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Making predictions is part of every domain of life, including health care, and when the prediction of healthcare outcomes influences the decisions that are made or the actions that are taken as a result of the prediction, these predictions take on ethical dimensions. Dr. Smith will begin with a brief historical overview, describing the waning of the importance of prognosis in medicine over time. This will lead to a description of the importance of prognosis in palliative care and geriatrics. Dr. Smith will also address ethical issues raised by the uncertainty inherent in prognosis, and issues in the communication of prognosis to patients. Dr. Smith will discuss his work in this area, including a website for estimating prognosis for older adults (eprognosis.org and ePrognosis: Cancer Screening, available for free in iTunes).
Join us for Alexander Smith’s lecture on Thursday, December 11, 2014 from noon till 1 pm in person or online.
Alexander K. Smith, MD, MS, MPH, is an Associate Professor of Medicine at the University of California, San Francisco (UCSF). Dr. Smith’s clinical training is in palliative medicine and general internal medicine, and his research interests are at the intersection of bioethics, palliative care, and aging. Dr. Smith is a Greenwall Faculty Scholar in Bioethics. In addition to writing for academic journals, Dr. Smith writes for his blog GeriPal. Dr. Smith was raised in East Lansing, Michigan, where his father, Blake Smith, taught at the College of Human Medicine, and where his mother, Margo Smith, currently works.
In person: This lecture will take place in E4 Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.
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.
Join 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.
Decision-making in Pediatric Oncology: Who Really Decides?
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.
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.