Center Assistant Professor Dr. Devan Stahl and Center Director Dr. Tom Tomlinson are the co-authors of a new article in Nature Reviews Clinical Oncology, titled “Is there a right not to know?”
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.
The Center for Bioethics and Social Sciences in Medicine (CBSSM) at University of Michigan held its 5th annual Research Colloquium on April 27, 2016. Assistant Professor Dr. Devan Stahl attended and presented on the patients’ right not to know their prognosis, and topic that generated much conversation among the participants both during and after the presentation.
The colloquium brought together scholars working in a variety of areas of bioethics. Presentations included topics such as clinical ethics consultation, medical insurance, VIP patients, breastfeeding, gene sequencing and community engagement in research. Overall, it was a very engaged group who had much to offer one another on a variety of interesting topics.
Abstract: There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.
The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.
The 17th Annual American Society for Bioethics and Humanities Meeting was held October 22-25, 2015, in Houston, TX. Center faculty Tom Tomlinson, Len Fleck, Libby Bogdan-Lovis, Karen Kelly-Blake, and Devan Stahl presented and participated in panel discussions during the conference.
Tom Tomlinson, PhD Director, Center for Ethics and Humanities in the Life Sciences
At ASBH I had the pleasure of making two presentations early Sunday morning. The first was “Is There a Right Not to Know?” In it I argued (with help from Devan Stahl) that despite presumptions to the contrary, patients with advanced terminal illness do not have a right to refuse information about their prognosis. Among other reasons, such a right pales by comparison to the right that is sacrificed: the right to make end of life decisions about their treatment that best preserves their values and goals. The second was “The Moral Concerns of Biobank Donors: The Effect of Non-Welfare Interests on Willingness to Donate.” In this talk I presented the results of a national survey conducted with colleagues at the University of Michigan. We argued that the survey results demonstrate that the ways in which donated, de-identified, biological specimens and data are later used matter to people’s willingness to give a “blanket consent” to any future research done with their donation. We argue that biobanks should take these concerns into account in the design of their consent process, in their public information policies, and in their review of proposed research studies.
Len Fleck, PhD Professor, Center for Ethics and Humanities in the Life Sciences
I presented Sunday morning at ASBH. The title of my presentation was “Precision Medicine/ Ethical Ambiguity?” My focus was on precision medicine as it pertained to cancer care. One often hears of cancers being identified by their “genetic signature,” or the genetic features of a cancer that drive the growth of that cancer. The goal of precision medicine is to design “targeted therapies” that match (and defeat) that genetic driver. Unfortunately, it turns out that most cancers have multiple “potential” drivers, some of which become actual drivers after a targeted cancer drug has contained the first driver. I pointed out that a major ethical problem (a matter of health care justice) is that these cancer drugs have costs of $100,000 or more for a course of treatment and generally yield on average extra weeks to extra months of life. I raised three critical questions: How many of these drugs does any one patient have a just claim to, if used in succession to defeat each emerging driver of that cancer? Keep in mind that about 600,000 individuals die of cancer each year in the US. Do all of them have a just claim to several of these targeted therapies at $100,000 each? Alternatively, a small percentage (maybe 5%) of cancer patients are “super responders” who might gain several extra years of life from having access to one or another of these, perhaps at a cost of $100,000 for each year of life gained. Should they alone have a just claim to these drugs because society is gaining so much more for the social investment? Or should access to these drugs be determined entirely on the basis of an individual’s ability to pay for these drugs (thereby sparing society the need to make explicit and painful rationing decisions)? I concluded that addressing these questions will require thoughtful and respectful democratic deliberation, not simple individual choices.
Karen Kelly Blake, PhD Assistant Professor, Center for Ethics and Humanities in the Life Sciences
In concert with research collaborators Libby Bogdan-Lovis (Assistant Director, Center for Ethics and Humanities in the Life Sciences), Nanibaa’ Garrison, (Seattle Children’s Hospital) and Faith Fletcher (University of Illinois Chicago), I presented “Identity Complexities: Unpacking Concordance in the Medical Workforce.” Our team reported preliminary results of a 2000-2015 scoping literature review to examine presumed benefits of matching URM physicians with patients sharing similar race/ethnic identities. Our project is supported by contributions of research assistants Brittany Ajegba (MSU CHM medical student), Nichole Smith (Vanderbilt premedical undergraduate), and Jessica Torres (University of Illinois Chicago MPH student). We found that of 139 abstracts meeting our inclusion criteria, medical workforce diversity is mentioned the most among variables. Patient outcomes are mentioned the least. Blacks are mentioned more frequently across primary variables. American Indian/Alaskan Native/Native American is mentioned least frequently across variables. Our next phase will be the content analysis of the 139 included articles.
Devan Stahl, PhD Assistant Professor, Center for Ethics and Humanities in the Life Sciences
I was on a panel with Drs. John Kilner and Jeffrey Bishop responding to Dr. Kilner’s book, Dignity and Destiny: Humanity in the Image of God, for the Bioethics and Christian Theology Affinity Group. Dr. Kilner’s book focuses on the how the image of God grants all humans inherent dignity which cannot be damaged or lost as a result of sin. The respondents then discussed the potential implications this theological anthropology has for bioethics. My response highlighted the need for a reimagining of the theological concept of dignity for persons with profound intellectual disabilities. I argued that although the concept of dignity cannot easily solve the complex issued involved in clinical ethics, it can reframe our interactions with persons with profound disabilities, whose humanity is often questioned in both theology and bioethics. By not basing our concept of dignity on any inherent capacity for intellect, righteousness, equality in relationship, etc., we allow room for those who do not have these capacities to maintain their status as bearers of God’s image and, therefore, claim them as persons worthy of respect and care. Ultimately, I argued that we ought to imagine friendship as the ultimate telos or destiny of human life. When friendship is our goal, our ethical priority is not to ‘fix” or cure what we find broken or defective in others, but to befriend persons so that they too can participate in the good life.
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.
Image Description: Two doctors consult with a patient in an exam room. Source: Wikimedia Commons
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.
References:
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.
Kalanithi P. Jan 24 2014. How Long Have I Got Left? New York Times. http://nyti.ms/1eXxdlj
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.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Tuesday, July 14, 2015. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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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.
Center Assistant Professor Dr. Devan Stahl and Center Director Dr. Tom Tomlinson are the co-authors of a new article in Nature Reviews Clinical Oncology, titled “Is there a right not to know?”
The 17th Annual American Society for Bioethics and Humanities Meeting was held October 22-25, 2015, in Houston, TX. Center faculty Tom Tomlinson, Len Fleck, Libby Bogdan-Lovis, Karen Kelly-Blake, and Devan Stahl presented and participated in panel discussions during the conference.
This post is a part of our Bioethics in the News series. For more information, .jpg)
Join us for Alexander Smith’s lecture on Thursday, December 11, 2014 from noon till 1 pm in person or online.