Tag: terminal patients

Religious Coercion of Physicians: Whose Conscience Is It Anyway?

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

By Leonard Fleck, PhD

Neil Mahoney is 64 years old and has a terminal cancer with a predicted life expectancy of 4-16 months. He lives in Colorado, a state that approved an aid-in-dying law in 2016. His physician is Dr. Barbara Morris, 65, a geriatrician whom he has asked to provide him with the drugs needed to end his life. She has agreed to do just that.

However, Dr. Morris works for the Centura Health Corporation, a Catholic-Adventist hospital system. Dr. Morris was fired from her position when it became public knowledge that she was willing to help Mr. Mahoney to end his life. We should note that she had no intention of doing this within the walls of the hospital or any of its facilities. She would accomplish this in the privacy of Mr. Mahoney’s home.

Moral-Dilemma-Ahead-road-sign
Image description: a yellow road sign reads “MORAL DILEMMA AHEAD” in bold black lettering. Image by Liz McDaniel.

In justifying its firing, the hospital CEO said Dr. Morris could be fired for “encouraging” the patient to pursue aid-in-dying, even if she never actually provided or assisted in any other way his accessing the drugs he requested. The CEO cited as a basis for this position the Ethical and Religious Directives for Catholic Health Care Services. The directives state that Catholic health care providers (which include everyone working in the institution, whatever their religious commitments or lack thereof) “may never condone or participate in euthanasia or assisted suicide in any way” (emphasis mine). Instead, “patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.” Alternatively, the care of that patient should be transferred to another provider, presumably one willing to respect the choice of someone like Mr. Mahoney.

It should be obvious that there is something ethically incongruous about this position. Imagine my walking into a Catholic gun shop in a horribly depressed state of mind and asking the owner to sell me a gun so that I could blow my brains out. He expresses compassion for my awful life circumstances, urges me to seek psychiatric care, then explains that as a Catholic he could not sell me that gun, knowing my intention. Having said all that, he informs me that a mile away is another gun store owned by an atheist who would have no qualms about selling me that gun. Given his religious commitments, would sharing such information be ethically justified?

Let’s translate the answer to that rhetorical question into Mr. Mahoney’s situation. He went to that hospital to get care for his cancer. He did not go there to receive aid-in-dying. However, imagine this situation. His cancer treatment at the hospital is failing miserably. At this point he does request aid-in-dying since he has no interest in redemptive suffering, either for himself or anyone else.

The hospital could transfer him to another hospital where his wish could be fulfilled. However, that sounds like the situation of our Catholic gun shop owner. Alternatively, they could explain to him that it would be contrary to their corporate conscience to effect that transfer. In addition, they believe several doses of redemptive suffering would be therapeutic for his spiritual well-being.

Mr. Mahoney could retain an attorney who would point out that Mr. Mahoney has the legal right to leave the hospital against both medical and spiritual advice. Other patients, however, who might be in much worse medical circumstances (unable to be transferred) would not be able to exercise that right or the right to access aid-in-dying. That brings us to the crux of this essay.

Whose conscience should prevail in this situation? If a physician or other health professional were asked to participate in some way in a request for aid-in-dying, and if such participation were contrary to their deeply held religious or ethical beliefs, we (political authorities in a liberal, pluralistic, tolerant, democratic society) would respect those beliefs and allow them to avoid participating. This is equal and reciprocal moral respect. What would that require if Mr. Mahoney were this latter hypothetical patient stuck in that hospital? Perhaps that would require allowing a physician who was not attached to the hospital to enter the hospital for purposes of providing aid-in-dying. It is hard to imagine Centura agreeing to that.

The alternative would be to allow a member of their medical staff who believed providing aid-in-dying to a patient in these circumstances was both ethically permissible and obligatory to do just that. However, Centura has made clear that no member of that institution would be allowed to do that, thereby imposing their conscientious beliefs on hundreds of staff who might not agree with that belief. This seems contrary to the notion of reciprocal moral respect.

Centura would expect that Catholic physicians in secular hospitals would be allowed to refrain from participating in any act of aid-in-dying. Why not allow non-Catholic physicians (or liberal Catholic physicians) in Catholic hospitals to act in accord with their sense of compassionate conscientiousness in Mr. Mahoney-like situations? There is a political and ethical contradiction here: the hospital is invoking our liberal pluralistic political heritage to secure protection for their conscientious beliefs, but denying that same protection to staff and patients within their walls who disagree with that religious commitment.

The hospital might portray itself as a “religious institution,” though this is misleading at best. It is not a church whose membership is comprised of individuals who freely choose to endorse a specific faith perspective. Hospitals, whether having any religious affiliation or not, are public institutions accepting public money (Medicare, Medicaid, etc.) to care for patients with or without any religious faith. People seek health care in those institutions, not spiritual guidance, and certainly not spiritual coercion.

Noteworthy in today’s health care environment is the acquisition of smaller hospitals by larger hospital chains, including Catholic hospitals absorbing secular hospitals and imposing a Catholic identity on them. Almost 20% of all hospital beds in the United States today are under Catholic auspices. Beyond that, these hospital chains are buying up all sorts of medical practices as a way of assuring a steady (and profitable) stream of patients and patient revenue. In effect, patients are being drafted (unbeknownst to themselves) into a religious environment, potentially to become soldiers in the cause of redemptive suffering.

More problematic, as noted earlier, was that Dr. Morris was going to provide aid-in-dying in the privacy of Mr. Mahoney’s home. Mr. Mahoney was likely not a saint. Still, it is unconscionable that he would have to undergo redemptive suffering for the sake of an institution to which he owed no allegiance to satisfy the conscience of that institution and its CEO.

Finally, a Canadian Catholic hospital was recently legally obligated to make available aid-in-dying to patients in accord with Canadian law. That service would be provided in a building adjacent to the hospital and owned by the hospital. Physicians employed by the hospital would be free to provide that service. This, I conclude, is a reasonable compromise that reflects mutual moral respect regarding an ethically complex situation rather than uncompromising redemptive religious righteousness. This also represents the equal political respect required for the peaceful functioning of a liberal pluralistic society and health care system.

Leonard Fleck photoLeonard M. Fleck, PhD, is Acting Director and Professor in the Center for Ethics and Humanities in the Life Sciences 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 6, 2020. 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.

More Bioethics in the News from Dr. Fleck: Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care; Medicare For All: This Is Going to Hurt; Greed Is God: The Divine Right to Avaricious Drug Pricing; Gene Editing: God’s Will or God’s Won’t

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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.

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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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The Joshua Hardy Case: Lessons Yet to Learn

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Hannah Giunta

Earlier this month, major news outlets reported the story of 7-year-old Josh Hardy, a current end-stage cancer patient at St. Jude Children’s Research Hospital. Hardy has faced and overcome cancer four times after first being diagnosed with rhabdoid tumors of his kidneys when he was only nine months old. After treatment for his kidney cancer, he relapsed, and cancer was again found first in his thalamus and then in his lung. In November 2013, Josh was diagnosed with myelodysplastic syndrome and required a bone marrow transplant. The weakening of his immune system caused him to come down with a particularly vicious case of adenovirus, and current antivirals have failed to control that infection. After approved drugs failed, Hardy’s doctors suggested that the experimental agent brincidofovir might offer the only viable chance at a cure. St. Jude previously hosted a clinical trial where patients who received the drug demonstrated a decrease in adenovirus-specific viral load. Hardy’s parents petitioned manufacturer Chimerix to provide the drug through a compassionate use protocol, but the company refused, saying that giving the drug to Josh and other critically ill patients would likely slow down the drug’s approval process. Chimerix officials also explained that the drug had not been proven effective in advanced adenovirus cases like Josh’s and that they did not have a current clinical trial in which they could enroll Josh. Public outcry over Chimerix’s refusal of the request, which included death threats directed at company executives, eventually pushed Chimerix to reconsider its decision and work with the FDA to start a new clinical trial in which Josh could enroll.

Although Josh Hardy’s case has been uneasily resolved, at least for the time being, public reaction reveals that larger questions are still unanswered. First and foremost, we continue to struggle with distinguishing our research system from our clinical care system in the U.S., and the resulting therapeutic misconception causes dashed dreams and animosity between drug developers and well-meaning, though misinformed, patient advocates. The truth is that the medication Josh is receiving out of compassion may make his life worse in the end, and failure to recognize this reality means false hope for families and insufficient attention paid to Josh’s quality of life. Secondly, there is a conflict between the needs of current patients like Josh and the needs of future patients who will benefit most from a fully approved medication. That conflict can only be meaningfully resolved when we have an honest discussion about what compromises we are willing to make. We cannot have both a drug development system that releases cutting edge medications meeting our stringent safety standards efficiently and one that makes unproven medications available on demand. The clinical trial system is not designed to release experimental agents for public consumption, even when that consumption occurs according to compassionate use protocols. Failing to get to the bottom of these conflicts leads to unnecessary heartache and public outrage.

Philosophers, researchers, and clinicians have struggled for years with how to prevent and ameliorate the impact of the therapeutic misconception. Defined as the failure to appropriately distinguish between the goals of research and the goals of clinical care, the therapeutic misconception leads to patients and family members believing that clinical trials are actually cutting edge treatment options, rather than legitimate experiments designed primarily to yield generalizable knowledge. In an effort to maintain hope for current patients, clinicians recruit participants with end-stage disease in order to push a research agenda forward while anecdotally hoping that somehow the experimental agent might benefit the enrollees. Unfortunately, previous reviews of pediatric cancer protocols suggest that substantial survival time is relatively rare. In fact, significant survival time was actually less common than drug-related toxicity (Kim et al. 2008). In Josh Hardy’s case, brincidofovir has only been shown to be effective in patients who did not have advanced adenovirus infection. Even then, the drug only demonstrated the ability to decrease viral load, and with Josh’s weakened immune system, his body may still not be able to clear the infection. Tissue damage is likely already significant after two months of illness. Most importantly, Josh has other significant co-morbidities and has had multiple cancer relapses. After Josh received his first dose of the drug, his own father admitted that his son faces a long road and is in bad shape overall (Cohen 2014). Seeing Josh weak, frail, and seemingly miserable in his hospital bed should leave us wondering whether this little boy has suffered enough. Perhaps, he might be better off if we focused solely on palliation and allowed the time he has left to be more comfortable and meaningful for him and his family.

The unique goals of medical research stem largely from a need to standardize clinical trials as much as possible to meet FDA standards. In order to show efficacy and safety, researchers use the gold standard double-blind, placebo-controlled clinical trial design. While this design helps researchers show aggregate differences in outcomes, it makes it less likely that individual patients will benefit from trial enrollment. In the trial earliest stages, participants are often randomly assigned to dosage groups, meaning that some participants may not even be receiving a therapeutic dose. In subsequent phases, participants are still randomly assigned to treatment arms of the trial, and if clinician-researchers don’t know what treatment a participant is receiving, it’s unlikely that they can provide individualized medical care for their patients. Living up to the FDA approval system’s high scientific requirements is a reality for Chimerix and other pharmaceutical companies, so distributing a drug in a less controlled situation presents a conflict. Maybe it is time to consider whether or not more novel trial designs or blended designs where patients receive an experimental intervention in a less controlled setting might help address this problem. Pediatric oncologists have recently expressed this opinion in a major research journal (Kearns and Morland 2014). Until we decide how rigorous our drug review standards need to be, we are forcing companies to confront a constant conflict between the human need for compassion and the larger social goal of developing new treatments.

Josh Hardy may or may not survive his current illness, although I hope and pray that he prevails. But, no matter the outcome, the Josh Hardy case should not be the end of our discussion. Josh’s story should push us toward a national conversation that asks the big questions. Most importantly, it requires us to reconsider the popular notion that research can serve two masters (i.e. the public and current patients) as well as the idea that length of life ought always to be our barometer for ultimate success in the face of terminal illness.

References:

Cohen, Elizabeth. “Josh Hardy’s father says son faces ‘long road to recovery.’” 15 Mar 2014. Last accessed on 3/17/2014 at http://www.ksl.com/?sid=29075987&nid=157.

Kearns P, Morland B. New drug development in childhood cancer. Curr Opin Pediatr. 2014 Feb;26(1):37-42. doi: 10.1097/MOP.0000000000000054. PubMed PMID: 24362409.

Kim A, Fox E, Warren K, Blaney SM, Berg SL, Adamson PC, Libucha M, Byrley E, Balis FM, Widemann BC. Characteristics and outcome of pediatric patients enrolled in phase I oncology trials. Oncologist. 2008 Jun;13(6):679-89. doi: 10.1634/theoncologist.2008-0046. PubMed PMID: 18586923.

Lupkin, Sydney. “Dying Boy to Get Unapproved Drug After Family’s Plea.” 12 Mar 2014. Last accessed on 16 Mar 2014 at http://abcnews.go.com/Health/dying-boy-unapproved-drug-familys-plea/story?id=22873957.

Lupkin, Sydney.  “Family Petitions For Unapproved Drug To Save Son.” 11 Mar 2014. Last accessed on 16 Mar 2014 at http://abcnews.go.com/Health/family-petitions-unapproved-drug-save-son/story?id=22851791&singlePage=true. 


hannah-giunta-100Hannah Giunta is a fifth year DO-PhD student pursuing a PhD in Philosophy and Bioethics.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, April 3, 2014. 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.

Wharton Center welcomes Abraham Verghese for World View Lecture Series

Abraham Verghese, M.D., renowned physician, best-selling author and professor at Stanford University, has earned accolades in and out of the medical community for his advocacy on behalf of patients. He is widely regarded as having influenced the way modern medical students think about what it means to be a doctor and to treat people. Much of his life’s work is brought to bear in his debut novel, Cutting for Stone, which has been celebrated by critics and spent over 50 weeks on The New York Times bestseller list. His work with terminal patients was intensely transformative and the basis for his first book, My Own Country: A Doctor’s Story.

The lecture will take place on Monday, October 8 at 7:30 pm in Cobb Great Hall, Wharton Center on MSU’s East Lansing campus. Tickets are $23 for the general public; free to MSU students, faculty, and staff. Purchase tickets online, or at the Wharton Center box office. All student, faculty, and staff tickets must be picked up in person at the box office with ID.

Event flyers:
Public: Abraham Verghese public
Students/Faculty/Staff: Abraham Verghese – MSU staff_students