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Futility Versus Miracles: Responding to Faith-Base ...
Futility Versus Miracles: Responding to Faith-Based Decision-Making
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Thank you, Dr. John, and thank you for organizing this session, and all of you for being here. So I'm going to be talking today about something I have not talked about before, but that certainly I have lived as, you know, in my 25 years of doing ethics consultation, a situation that I've lived through many times. And that is when patients or their families invoke miracle language, so futility versus miracles responding to faith-based decision-making. I don't have any financial or other conflicts of interest to disclose. I will say to you, given the topic at hand, that I have a PhD in religious studies. The focus is in ethics and bioethics, and my father was an Episcopal priest. But given both of those things, I personally have never had a leap of faith. I stopped going to Sunday school when I was 12, and that was cool with my parents. It was okay with them. So when all the other kids were in Sunday school, I was at the pharmacy down the street drinking chocolate Cokes. So conversations about miracles have been around for a long, long time. So this is an aphorism from Cicero, who was, this is probably, the statement was probably made somewhere around 90 BC, and Cicero was a Roman politician. He saw himself as a politician first. He was a rhetorician, did a lot for, actually, the Latin language, and was a philosopher more so later on in his life. But he made the observation, he was a very pragmatical guy, as you can see. He said, nothing happens without a cause, and nothing happens unless it can happen. When that which can happen does, in fact, happen, it cannot be considered a miracle. Hence, there are no miracles. So those of you who are philosophers and do, you know, maybe have taken courses in logic can see the syllogism that's inherent here. But I think it's maybe an important observation. And as an ethics consultant, when I hear family members or clinicians invoking a miracle, and there's a spectrum there, right, between where we are hoping, right, we're hoping for a miracle, to at least the clinician's perception that maybe that hoping for a miracle is actually a family member or a surrogate who is using the invocation of a miracle to hold the, or attempting to hold the health care team hostage to get what they want. So somewhere along that spectrum. Let me ask, for a show of hands, how many of you all have had patients or family members who've held out for a miracle or are hoping for a miracle? Yeah. I don't think there's a hand that hasn't been raised here, right? So when I talk to clinicians who call ethics consultations about this, one of the things that I try and say to them is, I mean, I'm going to get further into how we deal with the miracle language, but to think of the rare cases that are always brought up, often by family members, right? Well, my grandmother or my grandfather survived this, and they had written him off, and we're going to pull the plug on grandpa, and he survived, right? And those are statistical outliers, right? Rather than, depending on your point of view, rather than miracles. But one way to categorize them might be as statistical outliers. In my own backyard, so at the University of Virginia, back in the 1980s, our marketing slogan was, a miracle a day. And those of us who did ethics consultation then, our ethics consult service started somewhere around 1986, used to cringe because this was all over the hospital, right? There were posters in the hospital, a miracle a day. So we were promising, right, people miracles, and making promises that obviously we could not keep. And UVA Health, like today, is part of the Children's Miracle Network, right? We are a Children's Miracle Network hospital. So the notion, the idea continues. This is an excerpt from the local news organization, television station in Charlottesville, Virginia, from June 25th, 2023. So last June, it's a miracle, UVA Health does brain surgery without scalpels or saws, right? Focused ultrasound is being used to treat essential tremor and now Parkinson's symptoms. And doctors say it may be a non-invasive way to treat other brain diseases, right? So that's, you know, for those of us in this room, right, this isn't something that's earth-shattering for sure, right? But to have it described on local television as a miracle, right, is just rhetoric, really, that exacerbates what I would call a problem, okay? So looking at the world's religious traditions, most of them do adhere to the notion of, or the belief in miracles. So Buddhism, Jainism, Christianity, Islam, paganism, Wicca do not. Here's a common scenario. This is from a paper that was published in 2015 in JAMA Internal Medicine. They told a patient's wife that there was absolutely no evidence this gentleman would ever recover any cognitive function. She said, well, I just want to give him a chance for a miracle. We spent weeks watching this gentleman being ventilated with absolutely no chance of recovery. We were at the whim of her wishes. She seemed extremely sharp and understood a great deal what was going on. But despite that, she clung to what we felt to be irrational hopes. So divine intervention or magical thinking? And so how do we approach situations where families or patients are invoking miracle language? I want to give you a little, some data and some background about belief systems in the United States. So miracles are claims of power. This is a paper from 2018 from the American Journal of Bioethics. And if you're interested in this topic, I would commend this issue of a job to you. For those of you who don't read the American Journal of Bioethics, the way that it's organized is there's a target article, right? This is from the target article. And then people are invited or they submit commentaries, right, which are just what they say they are. And it really is a way of expanding the discussion about the arguments that are being made in the target article or bringing new things, new things to bear that the primary authors hadn't thought of. So this entire issue of a job had to do with responding to those who hope for a miracle practices for clinical bioethicists. So I commend this to you. Stories of miracles emphasize that holy figures have access to supernatural powers that transcend the limits of mundane human life. Indeed, in the Christian New Testament, one of the words for miracle is simply the word power. A miracle story is a way for a religion's adherence to emphasize the power their religion possesses, power that implies a divine warrant for a tradition. Claims of access to miracles are claims of power. Here's some data about belief in miracles in the United States. I don't know whether this will surprise you or not, but most Americans, these are data from 2018, most Americans, 79% believe that miracles still occur today. That's, I'm sorry, 2010. And the majority believe divine intervention could save a person from death, even when a physician argues that death is imminent. Patients who believe God is capable of miraculously healing their loved ones are more likely to doubt a physician's futility judgment, not a surprise there, and are more likely to request continuation of life-sustaining interventions despite the patient's poor prognosis. In a study regarding deaths resulting from trauma, 57% of randomly surveyed adults said that God's intervention could save a family member, even if physicians had declared the treatment would be futile. Nearly three-quarters said that patients have a right to demand such treatment. I'm going to repeat that. Nearly three-quarters said that patients had a right to demand such treatment. One in five physicians and other healthcare professionals surveyed said they believed that God could reverse a hopeless outcome. If you look at the U.S. in general, just thinking about religiosity, 47% of citizens in the United States define themselves as religious, 33% as spiritual, 18% as neither. And these are data from a July 2023 Gallup poll. Interesting that 18% neither has doubled since Gallup did their first poll in 1999. So the results from this study showed that it's possible to describe the perception of miraculous healing in categories of the essence of the causative factors, so they're natural or they're supernatural, and definiteness, defined or undefined. The majority of the respondents believed in miracles and most frequently associated them with God's action or intervention, and less often with the still undiscovered possibilities of the human organism or nature, and the least with medical biases. So divine intervention, hoping for a new scientific discovery that's going to, you know, offer options that we don't have at the moment. Not a surprise here. Respondents with stronger religiosity more often understood miraculous healings as an act of God than the activity of unspecified supernatural powers. Moreover, higher religiosity and understanding of miraculous healings as an effect of the supernatural specified determinant was connected with higher meaning in life. So that may be a silver lining in the cloud of people who have higher religiosity than others. A taxonomy of people who invoke miracles. Shaken invocators are people whose ideas of God and themselves have been upended by their illness, by the trauma of their illness, but they continue to find the miracle concept useful. And I think this gets back to what was said earlier, and that is that it's tied in with hope, right? I mean, it's fundamentally a form of hope, right? Shaken invocators are those whose conceptions of the miraculous appear cemented and unchanging. So regardless of their prognosis, regardless of the degree of their illness and the trauma of their illness. So they have unchanging interpretations of illness and death and God. As the data I've just shown you tell us, right, we as like healthcare providers, right, often share our patients or their surrogates' beliefs, right? We believe in miracles. We're part of the American population, right? That 40% of which is religious, 33% of which is spiritual, 18% of which is neither. I want to segue a little bit from belief in miracles to magical thinking. And belief in miracles is often categorized as magical thinking. We do this as healthcare providers, and it's frustrating to see by those of us who do ethics consultation and probably by colleagues and other healthcare professionals. And so here's a quote from a paper by Zing et al., Facts and Fetishes, When the Miracles of Medicine Fail Us. And this is another A-Job paper from 2018. We believe in our miracles. We believe in our miracles. And we get families to believe in our miracles. There's a lot of magical thinking. Doctors want success. So there's, we did it last time, or we did it for that patient, or my colleagues did it for that patient, and now I want to do it for my patient. The question is, when do you stop pursuing the miracle? Our ethicist said for the last 13 months, you have the mother oriented towards the miracle. You told her you were pursuing a miracle, but now at month 11, you suddenly say you can't. She's going to take time to come to that conclusion. So how do you navigate people who are somewhere on that spectrum, where there's an absolute full-fledged leap of faith belief in a miracle, and someone's invoking a miracle as a mechanism to get the team to continue on when treatment may be futile or medically and ethically inappropriate? So here is a process that has been put forth by Cooper and Burns and Jacobs, and they call it Amen and Challenging Conversations, Bridging the Gaps Between Faith, Hope, and Medicine from the Journal of Oncology Practice in 2014. So how do you respond to these requests? Form the patient's belief, validate his, her, or their position, Ms. X, I am hopeful too. Meet the patient or the family member where they are. I join you in hoping or praying for a miracle. We can talk about that one, because I'm not an advocate of that. Educate from your role as a medical provider, and I want to speak to you about some medical issues. And no matter what, assure the patient and the family that you're committed to them, and no matter what happens, I will be with you every step of the way. And I think that last one is probably the most important. You all are probably familiar with the work of the surgeon Atul Gawande, and maybe read his essay in the New Yorker several years ago, in which he said, he was very farthright, he said, hope is not a plan, right? And that the goal of medicine, right, or a goal of medicine is not for a patient to have a good death, but a good life to the very end. And if that's something that we can, you know, rather than, and I'll tell you that I'm a, I commit this sin quite often of saying, let's frame the conversation around a good death. I've just done it here, right? As opposed to, let's talk about a good life to the end. So other strategies involve pastoral care, or the patient, family clergy members that they have outside clergy members, obtain an ethics consult. And I want to reiterate how important it is, and it's been said already today, when you have established a plan of care, and there is, it's a time, there is a time limited trial, please make sure that you have specified concrete clinical benchmarks, so that the family and the healthcare team know that there, that this is part of a process, and that when a goal is or is not achieved, that we're going to head one direction or another. And that sort of, that not only tells people what the plan of care is, but it also sets them up to expect the fact that at some point, options, all of the options have been pursued, right? Perhaps except for helping a patient have a good life to the very end. And that's all.
Video Summary
The speaker, with 25 years in ethics consultation and a PhD in religious studies, discusses the challenge of handling situations where patients or families invoke miracle language, often in hopes of achieving miraculous healing. He highlights the spectrum of belief from realistic hope to perceived misuse of miracle claims to influence healthcare decisions. He references Cicero’s pragmatism, suggesting miracles aren’t divine but rare statistical occurrences. The speaker shares survey data showing that a significant portion of Americans believe in miracles, which often contradicts medical futility judgments. He describes strategies to address these beliefs through understanding, validation, education, and ensuring ongoing support. The speaker also mentions the importance of setting realistic healthcare goals and providing compassionate care, discussing various approaches including collaborative engagements with pastoral care or ethics consultation. He emphasizes the need for clearly defined care plans and benchmarks to manage expectations and guide end-of-life considerations.
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One-Hour Concurrent Session | Using the “F Word" in the ICU: Futility and Its Ethical Conundrums in Critical Care
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Presentation
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Year
2024
Keywords
miracle language
healthcare decisions
ethics consultation
realistic healthcare goals
compassionate care
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