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NDE Experiment: Ethical Concerns

Article

Sebastian Dieguez

Volume 33.5, September / October 2009

Anecdotal reports of people having paranormal perceptions during near-death experiences are widespread, and it has been suggested that such claims could be tested scientifically. But is it ethical to research this topic on unresponsive and nonconsenting patients, as a new study purports to do?

I do not think one has to apologize for scientific belief if one does not accept the ideas of spirits wandering around the emergency room.

—R.S. Blacher, 1980, letter to Journal of the American Medical Association, 244: 30.

You find yourself in a hospital bed, having recovered your senses just a moment ago. Your memories are confused, but you recall now that there was something about a tremendous pain in your chest, people bustling around you, and an ambulance roaring through the streets. Then nothing. A nurse tells you with a smile that you luckily survived a cardiac arrest. You’ve been brought to the hospital just in time for successful CPR to take place, and the doctors are now very optimistic about your recovery.

Thankfully, you won’t suffer from any irreversible brain damage. You feel relieved, but at the same time hundreds of thoughts rush through your mind. Now a doctor comes to see you. He tells you that he is “conducting a study into the experiences people have when they are in a deep coma”1 and asks whether you would like to participate in that study. Of course, before signing the consent form, you ask for more details. Only now do you realize that what this doctor really wants to know is whether you had one of those “NDEs” you heard about years ago on TV. He further wants to know if you somehow managed to perceive a special target that he took care to hide beforehand on a suspended board facing the ceiling. The following dialogue ensues:

Patient: What do you mean did I “see” a target? How on earth could I have perceived this thing, when not only I was nearly dying at the time, but by your own account the picture was turned the wrong way out? Is this some kind of a joke?

Doctor: Not at all. You see, some people who nearly die, just like you, nonetheless come back to tell the most amazing things. They explain that they went out of their body and were able to look down at the whole scene, including their own body! So we are currently testing whether this is actually true, and that is why I’m asking you whether or not you have seen the target.

P: Wait, you believe that stuff? Well, never mind…. But why are you asking for my consent now, hasn’t your silly little experiment already taken place? Why didn’t anyone ask me before whether I’d like to have anything to do with this nonsense?

D: Well, you see, you were unconscious at the time, and …

P: Yes, that’s exactly my point! I was unconscious! This is appalling! Does this hospital actually allow you to do this?

D: Of course. This is part of an international study. Now tell me sir, did you see the Light by any chance?

The preceding scenario is not pure fiction. Such a surreal conversation could very well be taking place right now in various hospitals around the world, where a widely publicized large-scale study on near-death experiences (NDEs) has been recently launched. The AWARE study (AWAreness during REsuscitation2) purports to “use the latest technologies to study the brain and consciousness during cardiac arrest” and at the same time test “the validity of out of body experiences and claims of being able to see and hear during cardiac arrest through the use of randomly generated hidden images that are not visible unless viewed from specific vantage points above.”3 The project is being led by Dr. Sam Parnia (University of Southampton) and is said to involve “more than twenty-five major medical centers throughout Europe, Canada, and the United States.” Because NDEs can occur in many different circumstances (many of them not even “near-death”), prospective studies in homogeneous populations are important to gain a better understanding of such experiences. In this regard, cardiac arrest offers a relatively standardized and workable model of what each of us might ultimately experience at our last breath, as well as an ideal population to know more about NDEs and their physiological correlates.4 As it has been found that only around 6–12 percent of cardiac arrest survivors remember anything like an NDE from their ordeal,5 it is clear that only a small number of such patients can be studied in a particular setting and in any reasonable amount of time. Moreover, it is worth remembering that cardiac arrest survivors regrettably represent only a small minority of cardiac arrest sufferers, as most of these patients simply cannot be resuscitated. At first glance, this is why the AWARE project seems like a very promising study, as it will be conducted simultaneously in several medical centers, will involve many investigators from different fields and will last for about three years. Parnia and his colleagues estimate that around 15,000 patients will be included, of which a conservative estimate of 1,500 might survive and about 150 might report some kind of memories resembling an NDE. (Moreover, according to some estimates, only about 24 percent of patients with NDE will report some kind of out-of-body experience [OBE].).6

This leaves us with around forty patients out of 15,000 that could possibly provide data concerning alleged out-of-body perceptions. As this would constitute the largest series of OBEs ever collected, it seems that this is the kind of investigation that should put aside conflicts between skeptics and believers and shed new light on a fascinating, albeit controversial, topic.

Prominent skeptics of NDEs indeed seem to think so. For instance, Susan Blackmore wrote: “If Parnia does the experiments properly, and his patients really can see those images, then I will change my mind about the paranormal. I don’t think it’s going to happen but I do think it’s worth him making the attempt.”7 And Chris French, quoted by journalist Bryan Appleyard in the Sunday Times commented, “This is definitely a legitimate scientific inquiry…. Refereed proposals of this kind have my full support. There’s no doubt that people have these experiences, and there is something of great psychological interest to be explained here.”.8

I don’t take issue with French’s last sentence. NDEs are interesting. But should skeptics unquestioningly embrace the AWARE study as scientifically legitimate? This “openness” is not entirely new either. Philosopher Keith Augustine, author of a thorough three-part demolition of “survivalist” approaches to NDEs, has also expressed the desirability of such research:

The cutting edge of near-death research lies in controlled tests of veridical paranormal perception during the out-of-body phase of those NDEs that include OBEs. The detection of remote visual targets during out-of-body NDEs has the potential to provide decisive evidence of consciousness functioning independently of the body, conceivably answering the survival question once and for all…. It is imperative that further target identification experiments be simultaneously carried out at multiple hospitals over a period of several years.9

What is striking about these comments is the way they seem to entirely disregard the subjects of such a study: the patients. If their perspective was taken into account, it seems that such studies should be decried as unethical. I will explain why this is so and then respond to some expected objections. Basically, my problem with the ethical value of this study is as follows: the subjects will not be able to give their informed consent at the moment of the experiment, and the rationale of the experiment is based on the paranormal. Combined, these facts make the AWARE study ethically bankrupt and thus unacceptable.

Informed Consent?

Let’s look first at informed consent. Obtaining informed consent is a necessary requirement for any scientific study involving human subjects. This means that individuals have a basic right not to be enrolled in scientific studies against their will or without being so informed. If they agree to participate in a study, they should be thoroughly informed about its goals, details, and risks. Although the extent to which this requirement sometimes needlessly hinders or slows down valuable and harmless behavioral research and the situations in which it can reasonably be modulated, adapted, delegated, postponed, or even waived are a matter of debate between scientists, institutional boards, ethical committees, and the general public,10 there is nevertheless widespread agreement that informed consent cannot be treated lightly. It seems obvious that informed consent cannot be obtained in research projects involving unresponsive patients, and the AWARE project, as I understand it, will specifically involve many such patients in need of emergency care. Indeed, by definition, a scientific project associated with procedures of resuscitation cannot reasonably depend on the informed consent of the subjects themselves. As Parnia et al.’s study will include 15,000 patients in three years, they cannot possibly select only those who could provide consent for their study before they arrive in the emergency ward or even while they are there being resuscitated. In such cases, as research in the area of emergency medicine is legitimate and must be done, other standards apply. These standards differ across countries but basically demand that a number of criteria be met to obtain an exception from (or waiver of) informed consent.11 It is my impression that behind such criteria, even if this is not always stated explicitly, lies the obvious assumption that the research must actually be worth conducting. This means that it should be promising or at least based on a sound, scientific rationale.12

So let’s take a close look at what the AWARE study is about. The most publicized aspect of this project is clearly investigating the possibility of genuine disembodied perceptions (i.e., from an “out-of-body” visual perspective) using pre-installed “hidden targets” in the emergency ward. What exactly is the logic behind this? Although this is rarely stated explicitly in the NDE literature, it can be put this way: NDEs, especially in cardiac arrest sufferers, provide a kind of super-optimal circumstance to test the veracity of the OBE. Specifically, the NDE provides a unique chance to test for paranormal perception while the brain is not functioning correctly or even not functioning at all. Let me emphasize this point: the idea behind this kind of NDE research is not only to demonstrate the “veridicality” of OBE perceptions but to further associate them, or rather dissociate them, from particular states of brain activity. Then, not only would NDEs provide evidence for the paranormal but such evidence would come—as a bonus—in the context of severe neurological impairment, thus implying that the mind is really more than brain function. But why should one even consider such an idea in the first place? Well, the only reason consists of taking at face value the phenomenology of some NDEs, or rather the verbal reports of some patients who describe how they were “out of their body” and could look down at the scene. The AWARE study is thus based on scattered anecdotes from popular literature that lead some researchers to ask whether paranormal perceptions would somehow occur while or even because the brain is shut down. And this, of course, can only be tested in human subjects at great risk of dying or suffering irreversible brain damage. So the question raised by the AWARE study is really this: should unresponsive and dying patients become the ideal subject pool to investigate the possibility that the mind can be sustained without a functional brain merely because anecdotes suggest so to some researchers? I say no; this should be avoided out of respect for the patients, their families, and the image of medical science in general.

Arguments for Research

Readers might wonder if I’m overreacting, and there are several predictable rejoinders to my objection.

First, one might argue that the AWARE study could not have been launched and announced to the entire world if it had not already received approval from relevant local review boards. Indeed, this seems so obvious that I take it as a given. My point in this article is not to charge anyone with not having done the appropriate paperwork; I take issue with the very approval of such a study: I simply deplore the use in parapsychological studies of patients with acute cardiac arrest who cannot give their consent.

Still, one might argue, even granting that the experiment is useless and bound to fail, is it not at least worth a try? If it does not interfere with CPR and is entirely harmless, why not do it?13 I can only repeat that having subjects report about the content of a target hidden from their senses is nothing more than a parapsychological experiment. In any medical research, the benefits must outweigh the risks. Suspended boards do not involve any risk at all, anyone will grant that, but as a parapsychological investigation, the therapeutic benefits (and more generally, the scientific benefits14) are also inexistent. So why even do a zero-risk and zero-benefit study, especially on unresponsive patients? Research with patients should be foremost about helping patients. No clinical research, for example, should purport to singlehandedly tumble down the current “mainstream” materialistic paradigm of brain-mind interactions or any other “paradigm” for that matter. “Hoping for the jackpot”15 is simply not how science works. Indeed, if the null-hypothesis of the AWARE study is that perceiving a hidden target at the moment of death is impossible, then imagine how many more studies of the kind could be done and consider whether this is how progress is made in science. Think about it this way: how would the logic behind the AWARE study be different than that of weighing the bodies of cardiac arrest patients in order to investigate whether the departure of the soul induces a loss in body mass, however small? In a study involving 15,000 patients, one could compare three groups: patients who died, patients who survived and had an NDE, patients who survived and had no NDE. If the soul leaves the body during NDEs and at death, and if this decreases the weight of the physical body, such a large-scale multicentric study would definitely demonstrate it. After all, similar studies have been conducted in the past, which sometimes yielded intriguing results16 (see the “Soul Scales” Skeptical Inquiree column in the January/February 2007 SI). Here’s the dilemma: if one believes that the AWARE study is ethical, one would have to agree with one of the two following claims. 1) Weighing dying patients without their previous consent in order to study whether the departure of the soul can be measured is a perfectly ethical thing to do in the name of science; 2) Comparing such an experiment to the study of paranormal NDE perceptions (even using the very same population) is inadequate or unfair. I can’t think of any convincing defense for each claim, therefore I rest my case that minimal risk is not a sufficient criterion to conduct research without consent.

Neither does it matter that surviving patients might provide informed consent during recovery. What matters is that at this stage the patient has already been involved in a parapsychological experiment without his consent. Unless a patient reports his memories spontaneously, the interview will be the first moment when any NDE (let alone any “veridical perceptions”) will be reported. But this interview is not when the experiment starts. The experiment starts with the very presence, the premeditated presence, of a “hidden target” in the emergency ward. In such an experiment the independent variable is the pre-selected target, and the dependent variable is the response (or lack thereof) of the patient about that specific target. Therefore, the experiment takes place while the patient is unconscious and unable to provide his consent to be part of the study. This is completely unlike the more typical situation where a patient may spontaneously report having observed some event during an apparent state of unconsciousness. As a planned experiment involving specific hypotheses and objectives, special materials, dedicated staff, and so forth, the AWARE study has to respond to the same requirements as any other research on cardiac arrest resuscitation, and I claim that it fails to do so. An exception from informed consent is a very precious commodity for medical scientists. It must be restricted to promising and necessary projects, and quite frankly the contribution of parapsychology to medical science has been virtually nil.

On a related note, I’d be curious to know what exactly will be communicated to patients when their consent is asked for in the AWARE study in order to avoid any misunderstanding about the exact nature of the study. It would be interesting to know whether the researchers will explicitly tell the patients or their patients’ relatives that part of the research is in the field of parapsychology. If nothing else, patients might be interested to know that they have been involved in a study testing whether brain function is necessary to sustain the mind, whereas modern resuscitation is precisely all about minimizing brain damage. Some leaders and advisors of the AWARE project indeed have explicitly argued that the mind survives brain damage. Those researchers have repeatedly written pro-paranormal accounts and have expressed their distrust of what they often dismissively call “mainstream” science, putting themselves on the fringe of the scientific community. Perhaps patients should be entitled to know this, as it is their brains that are at stake during the study. More generally, it is easy to perceive that there is much more behind this study than a simple wish to “settle a debate.” The plan is to convey foremost the idea that there is a debate or something “to settle” in the first place, much like intelligent design proponents would like to “teach the controversy,”17 with about the same level of intellectual sophistication. The problem here is that patients are being involved in a battle where they don’t belong.18

Finally, there may be accusations of censorship or narrow-mindedness. Do I want to suppress research? Am I the great inquisitor deciding what is good and bad research? Am I afraid that my (materialistic) worldview might be shattered by NDE research? None of this matters. As far as the AWARE study is concerned, the issue remains an ethical one for skeptics and believers alike. There is always a power issue when doctors and scientists want to test something that involves the participation of patients, even more so with unresponsive patients. It is not simply that I personally think the AWARE study is useless and dubious. Patients should have a right to simply refuse to be part of it, since the experiment would not solve any medical problem or help improve some currently unsatisfying therapeutic. And yes, open-mindedness and curiosity are good things, but is open-mindedness a sufficient reason to use unwilling and unresponsive cardiac arrest victims in a far-fetched test of paranormal abilities? I don’t think so. Just because anecdotal reports of paranormal perceptions during NDEs are associated in folklore, religion, and pop-culture to the metaphysical anxieties of the afterlife doesn’t give them de facto scientific legitimacy.

Notes

  1. Parnia, Sam. 2008. What Happens When We Die? London: Hay House. p. 97.
  2. AWARE press release is available online here and here.
  3. However, it seems that these “hidden images” will not be “randomly generated” after all but are simply pre-installed pictures on a board. There are allegedly about 750 of them already scattered across different hospital areas. It is not clear if these pictures will be regularly changed, who is blinded to their content and who is not, when they will be removed, and so forth. Examples include a baby or a pink dog. (See press conferences on the AWARE study here and here.)
  4. I will assume that most readers know what an NDE is and will thus not delve into the vexing issue of how it should be defined exactly (which I claim elsewhere is one of the main problems of NDE research, see Dieguez, Sebastian 2008. NDE redux. Skeptic 14 (3): 42-43).
  5. Blanke, Olaf, and S. Dieguez. 2009. Leaving body and life behind: Out-of-body and near-death experience. In Laureys, S. (ed.). The Neurology of Consciousness. Amsterdam: Elsevier. pp. 303–325.
  6. van Lommel, Pim, et al. 2001. Near-death experiences in survivors of cardiac arrest: A prospective study in the Netherlands. Lancet 358: 2039–2045. In another study, Parnia found that four out of sixty-three studied cardiac arrest survivors reported an NDE, but none involved an OBE. The OBE, however, is very loosely defined in NDE research and does not necessarily entail visual perception of one’s surroundings and own body.
  7. Blackmore, Susan. 2008. Back from the grave: Research on near-death experiences is unlikely to find evidence that human consciousness can survive without a brain. Available online.
  8. Appleyard, Bryan. 2008. The living dead: The afterlife has long been an article of religious faith. And now scientists are finally putting the idea to the test. Sunday Times, December 14. Available online.
  9. Augustine, Keith. 2007. Does paranormal perception occur in near-death experiences? Journal of Near-Death Studies 25 (4): 203–236. pp. 230; 233.
  10. For a general discussion about the problems behavioral scientists face with such regulations, see S. Kim, P. Ubel, R. De Vries. 2009. Pruning the regulatory tree. Nature 457 (7229): 534–535.
  11. For an overview of the heavy regulations and numerous criteria involved in research in emergency medicine, see V.N. Mosesso and D.C. Cone. 2005. Using the exception from informed consent regulations in research. Academic Emergency Medicine 12: 1031–1039.
  12. Watters, D., M.R. Sayre, R. Silbergleit. 2005. Research conditions that qualify for emergency exception from informed consent. Academic Emergency Medicine 12: 1040–1044.
  13. A colleague of mine quipped: “Why should you care? The patients won’t even see these suspended boards….” I fully agree, but ethics in medical research obviously cannot be based on the outcome of the study to be evaluated.
  14. The AWARE study seems to suffer from certain limits that make it basically unable to solve the “debate” it claims to investigate either way. Notably, the use of pre-installed fixed targets instead of randomly alternating ones makes it impossible to correlate any perception (should they happen) with any particular brain-state.
  15. Blackmore, Susan. 1987. Parapsychology’s choice (commentary on Rao and Palmer, and Alcock). Behavioral and Brain Sciences 10 (4): 572–573.
  16. See Roach, Mary. 2005. Spook. London: Norton. chap. 3.
  17. See newscientist.com; Clark, Andy. In press. There is no nonmaterialistic neuroscience in Cortex; and Farah, M., and N. Murphy. 2009. Neuroscience and the soul. Science 323: 1168.
  18. It is my opinion that the presence of militant anti-materialists in the emergency ward should be, to skeptics and rationalists, an even more appalling prospect than creationists in the classroom.

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Sebastian Dieguez is a PhD student at the Laboratory of Cognitive Neuroscience of the Brain Mind Institute at Ecole Polytechnique Fédérale de Lausanne, Switzerland.