Terminal Illness and the Right to Ignorance

Bioethics-in-the-News-logoThis 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.

Doctor_consults_with_patient

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.

tomlinsonTom 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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4 Responses to Terminal Illness and the Right to Ignorance

  1. Mike B. says:

    To me, I don’t think it’s that complicated of an issue – which means I’m likely missing something. In the scenario posted, I do not agree with the oncologist. As an adult asking a medical professional what the prognosis is, I think he or she is obligated to get the best opinion possible – there was no reason for a flat-out denial. The oncologist could’ve provided a preliminary assessment, making it very clear that it’s too early to provide anything definitive but a “preliminary broad assessment is . . .”. Then the oncologist would follow up with the comment that a more definitive answer would be provided after the conclusion of the tests, etc. If I were in the patient’s shoes, I would want to be the master of my hope, how I react, etc. – it’s not for a doctor to decide for me whether I’m going to perceive the information as dashing hopes.

    In terms of the right not to be told of a prognosis, the patient could sign a waiver – which would indicate clearly full disclosure by the medical professional with the patient opting for no information related to his/her prognosis.

  2. Bruce Miller says:

    “You have metastatic lung cancer. Do you want to know your prognosis?” “No, I’d rather not know”
    Is that it? End of discussion? Mike B puts the matter in a more nuanced method. The physician could ask ” Why don’t you want to know? That can start a discussion between physician and patient,
    Whatever the outcome of the discussion; it would al least allow physician and patient to appreciate each other perspective. The patient may change his mind, and if not the phusician would have a fuller understanding of the patient’s position.
    Bruce M

  3. Susan Dorr Goold says:

    The question “Do patients with advanced incurable illness have a right not to be told their prognosis?” presents a falsely dichotomous choice. First, there is a difference between “no, I won’t tell you your prognosis” and “No, I really can’t tell you your prognosis with any degree of confidence.” The latter is really what the oncologist described was, in my interpretation, saying. Second, I think patients can certainly influence how much and how they are informed about prognosis, with prognosis including all possible outcomes given all possible choices with regard to course of action, the likelihood of each, and the confidence of those estimates. That’s alot of stuff to absorb. Third, a patient can certainly appoint a proxy to hear information and make or help make decisions. Finally, if a patient can articulate their goals (e.g., how they balance survival, quality of life, burden of treatments, etc), and the doctor can recommend a course of action on that basis, do they need to know prognosis to exercise autonomy? I would argue they don’t.

  4. Tom Tomlinson says:

    First, some comments regarding Dr. Kalanithi’s oncologist. I agree with Dr. Goold that at that stage the oncologist was in no position to provide a meaningful prognosis. — and it would have been irresponsible and misleading for her to have attempted to provide one. So although Mike B. is right to expect that oncologists should be willing to provide their honest, and well-grounded prognosis when the patient asks for it, they can only fulfill that obligation when they have a sound basis for predicting the patient’s survival.

    Just as a side note– there is evidence that physicians in general overestimate their patient’s life expectancy even toward the end of life, by many orders of magnitude. (Christakis NA, Lamont EB. 2000. Extent and determinants of error in physicians’ prognoses in terminally ill patients: prospective cohort study. West J Med. 172(5):310-3.) And this was especially true among the oncologists in this sample.

    The question becomes more critical later, when there is good, individualized evidence available that supports a poor prognosis. There I think the oncologist has an obligation to inform the patient of the poor prognosis. Otherwise, the patient’s capacity to make sound decisions in their own interests is impaired. One needn’t fulfill this obligation in a callous way. So one might, as Bruce Miller suggests, start with an invitation– would you like to know your prognosis? If the answer is “yes,” then all is well. But if it’s “no”– then what? One might then inquire as to the reasons, as Miller suggests. But the conviction that likely motivates that inquiry is that the patient needs to know. If the conversation is to come to an honest conclusion, then, the patient should clearly get the message that their physician very much thinks they need to know, and why they need to know.

    Pussy-footing around prognosis in advanced disease not only feeds the patient’s denial; it encourages the oncologist’s denial as well. A toxic combination that poorly serves patients at the end of life.

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