Late this afternoon, I happened to be sitting in my office perusing the websites for the latest batch of surgical journals, trying desperately to catch up on my reading, something that I, like most academic surgeons, am chronically behind in, when I happened upon the website of the Archives of Surgery. There, the lead article caught my eye, and I downloaded it for later reading. Then, as I perused a few news sites (yes, I was procrastinating; but who doesn't procrastinate from time to time?), and I came across a story about this very study:
CHICAGO - When it comes to saving lives, God trumps doctors for many Americans.
An eye-opening survey reveals widespread belief that divine intervention can revive dying patients. And, researchers said, doctors "need to be prepared to deal with families who are waiting for a miracle."
More than half of randomly surveyed adults -- 57 percent -- said God's intervention could save a family member even if physicians declared treatment would be futile. And nearly three-quarters said patients have a right to demand such treatment.
My first reaction was: Tell me something I didn't know. Dealing with such situations, especially the ethics of dealing with situations in which science tells us that treatment is futile but the family demands futile care is among the most difficult task physicians will face. My second reaction was that it was rather jarring to see this so starkly placed in print. I also realized, upon going back to read the actual study, entitled Trauma Death: Views of the Public and Trauma Professionals on Death and Dying From Injuries and coming out of the University of Connecticut (I figure I owe the institution one, given how I trashed a study coming from there yesterday) that there was far more to the study than what was reported in the news report, which focused almost exclusively on the belief among the public that divine intervention could reverse a terminal injury and result in recovery. Although a major result, when taken as a whole, the study tells us a lot more than just that many Americans have religious beliefs that lead them to hope that God will produce miraculous recoveries for their family members from fatal injuries.
The first thing that has to be recognized is that this survey was primarily about trauma and end-of-life care in the post-injury situation. This is a bit of a different beast than end-of-life care in other fields. The reason, of course, is that trauma is sudden. Patients are injured suddenly, rushed to an emergency room, and then treated by strangers with whom neither the patients nor families have a preexisting relationship. Contrast this to, for example, my specialty of cancer care, where in most cases the realization that a patient's tumor has progressed to the point where further attempts at curative therapy or even life-prolonging therapy are futile generally does not occur in such a rapid sequence. There is usually time for the patient and family to develop a rapport and some mutual trust with their doctors, nurses, and other health care professionals. True, there are occasional situations where a patient arrives at the emergency room in extremis from a previously undiagnosed advanced cancer and the patient and family have to be told that there is nothing that can be done to save the patient's life, but such cases are pretty uncommon.
So what did the survey show? Several things, actually, and I'll briefly discuss the major findings of the study. In some cases, the responses to the questions were recorded for both the general public and for health care professionals, and the differences in responses between the two groups are part of what's revealing about this study. One thing that was interesting was that between 46-47% of both the public and health care professionals reported receiving emergency medical care in the last 10 years, a category into which I've fallen, actually--although just barely (it was over 9 years ago). In addition over 12% of both groups had had a close friend or family member die as a result of serious trauma, which just goes to show how ubiquitous traumatic injury is in our society, thanks mostly to the ever present automobile. In these aspects, there really was no difference between health care professionals and the general population.
The first scenario was how to deal with a traumatic death at the scene in the prehospital environment. 50.1% of respondents prefer that a loved one fatally injured in an accident be taken to a hospital, with their reasons being evenly divided between hoping that further treatment can be done and feeling more comfortable at a hospital. This result does not surprise me in the least. In fact, during my days as a flight physician on a helicopter rescue service, there were at least a couple of times where we kept doing CPR and making efforts at resuscitation, even going so far as to fly the patient back to our home hospital or the nearest major medical center even though we knew the patient had been down too long to have any realistic chance of every being revived. One situation in particular I still recall involved a child who had drowned in Lake Erie near Put-in-Bay. To me it was immediately apparent that the unfortunate child had clearly been down far too long to have any hope of being resuscitated, but we continued CPR anyway. Those situations, when they happened, made me feel acutely uncomfortable, and after the Put-in-Bay incident I expressed that to the nurses and pilots (most of whom were far more experienced than I at this), asking why I as the physician in charge couldn't have just called the code on the scene. (Indeed, to this day I sometimes think about that child. This incident happened around 16 or 17 years ago, and he would now be college age if he had survived.) The answer was that we were doing this as much for the families and referring paramedics, the feeling being that we should not overrule the original decision to begin CPR and should give the on-site rescue team the benefit of the doubt. Also, if we were to come flying onto the scene in our big fancy helicopter and then call the code over, it was thought, it might seriously demoralize the rescue workers, and it would certainly devastate families, friends, and random onlookers. At the time, I could sort of see the rationale, but I also thought it to be incredibly demoralizing to myself, the nurse, and the rest of the flight crew to have to go through the motions even in hopeless cases like that. On the other hand, I also understood in drowning cases the maxim that the patient isn't dead until he's "warm and dead," realizing that hypothermia can be protective of the brain to a sufficient degree that on occasion revival is possible. What I didn't understand was why we sometimes did the same thing in non-drowning injuries.
My point, I guess, is that in the field we frequently do things and take victims to the hospital as though there is hope even when we as trained health care professionals know there is almost certainly none, and we not infrequently do it more for emotional than rational, science-based reasons. There are also legal reasons, because sometimes autopsies will be required, but even in such cases there is no science-based reason why the victim couldn't be taken straight to the morgue after having been declared dead in the field.
In contrast, health care professionals were much more willing to let a fatally injured loved one be taken somewhere other than a hospital, with only 13.6% being willing to allow the victim to be taken elsewhere as compared to only 1.7% of non-professionals. Moreover, only 13.4% of professionals would insist on having their loved one taken to a hospital because they thought something might be done, which most likely reflects a more realistic view of the situation. One interesting question asked was: "If there were an alternative facility with religious and counseling services, which would you prefer?" 63.4% of health care professionals would prefer that alternative service while only 29.4% of the general public would. Again, this likely reflects a more realistic understanding among health care professionals.
The second major finding was that 52% of the general public and 62.7% of professionals would prefer to be present in the emergency room during resuscitation. I must admit that this is a tough one for me. If the victim were a child, the numbers increase to 79% and 78.7%, respectively. I have to admit that this is a tough issue for me. Back when I used to cover trauma, I thought that the presence of family in the trauma room was very distracting to me in my desire to do my utmost to save the life of the patient, and I feared that the rather nasty sites, sounds, and, yes, smells of a resuscitation could traumatize the family member. On the other hand, in the case of a conscious patient I can well understand how the presence of a family member could be reassuring. It's an issue I never resolved, and, given that I haven't had to do a trauma resuscitation in nine years, it's an issue I'm unlikely to have to face again.
Finally, let's deal with the part of the study that everyone's reporting. In essence, it is the finding that 57% of the general public believe that divine intervention could save a patient's life when physicians have come to the conclusion that further attempts at life-saving treatment are futile, while only 19.5% of health care professionals expressed such a belief. As a corollary, it was also asked about patients in a persistent vegetative state (PVS), such as the one Terri Schiavo was in: "Do you believe that someone in a PVS could be saved by a miracle?" To this, the general public answered 61.3% yes and 32.5% no; health care professionals answered 20.2% yes, 57% no. These proportions were strikingly similar to the proportions of people who believe that divine intervention can save the life of a patient who is fatally injured. The results of this survey might also help explain why so many religious people took views so contrary to those of the medical mainstream regarding the Terri Schiavo case. On the other hand, what is lacking in a lot of the reporting about this survey is the additional finding that, on a scale of 1 to 10 where 1 indicates no trust at all and 10 indicates complete trust, the public scored their level of trust in a physician's recommendation that further attempts at life-saving treatment would be futile at 7.0, which is pretty high in the case of a traumatic injury and in dealing with physicians who are not well known to them. In contrast, health care professionals scored their level of trust at 9.4.
As for the questions about whether God could miraculously heal a fatally injured victim, it turns out that that question was just part of a series of several questions about how important sensitivity to culture and religion by medical staffs is to most people. Indeed, here is the table which summarizes the results and shows them to go far beyond what most reports have discussed:
Consistent with the religiosity of the U.S., large pluralities of both the public and health care professionals characterize their religious beliefs as either "very" or "somewhat" important in guiding their decisions about medical care in the event of critical injury. This survey suggests that, although health care professionals and the general public may differ in how they apply religion to their health care decisions, very similar numbers of the general public and health care professionals view religion as important in their lives and in their health care decisions during critical illnesses. I've pointed out before that, unlike the case with many scientists, physicians tend to have a level of religiosity that is at least as great, if not even greater, than that of the general public, and this study confirms it. It also suggests why physicians tend to fall for "intelligent design" creationism. While they have a more pragmatic approach to their religion when it comes to their area of expertise, accepting far more than the general public that if the medical evidence shows no hope of survival that there is no hope of survival; when they wander outside their area of expertise they are more prone to let their religion color their thinking. One surprise to me was how many people characterized their religious beliefs as being "not at all important" in guiding them in making health care decisions. It was 18.4% of the general public and 17.1% of health care physicians, with no statistically significant difference between the two. Based how religious the American public is by and large, I would have expected lower numbers. I also would have expected that it might be lower among health care professionals, given the previous responses that suggest that, when it comes to the expectation of miracles at least, health care professionals don't let their religious views color their hopes for recovery to nearly the extent that the general public does.
Putting this study together, I see some rather muddled views of Americans when it comes to a large number of issues related to end of life care after an unrecoverable traumatic injury. Most people in the U.S. are religious, and most people still consider religion to be paramount in how they approach end-of-life decisions. This study also clearly points out that to the vast majority of people, including health care professionals, religion matters a lot, although health care professionals appear to be more able to keep their religious beliefs from affecting their expectations for recovery nearly as much as the general public does. The finding that so many people hold out hope for miraculous healing by God is simply a consequence of the religiosity of most Americans and in that context is not particularly surprising. It also points out the importance for health care workers of being sensitive to people's religious beliefs, whether we as health care workers share them or not. Failure to be respectful can lead to nasty conflict and the patient's family losing faith in the physician's recommendations, with potentially disastrous consequences for good patient care. The study's lead author put it well:
Jacobs said he frequently meets people who think God will save their dying loved one and who want medical procedures to continue.
"You can't say, 'That's nonsense.' You have to respect that" and try to show them X-rays, CAT scans and other medical evidence indicating death is imminent, he said.
Relatives need to know that "it's not that you don't want a miracle to happen, it's just that is not going to happen today with this patient," he said.
In the discussion, Dr. Jacobs also writes:
The large percentage of people who indicated that religious beliefs are important, including the potential for miracles to change futile outcomes, should be appreciated by health care professionals. Sensitivity to this belief will promote development of a trusting relationship that is critical to convey the scientific basis for the conclusion that there is objective, overwhelming evidence that continued medical interventions will not lead to a successful outcome.
Similarly, Dr. Michael Sise, trauma medical director at Scripps Mercy Hospital in San Diego observes:
Sise, a Catholic doctor working in a Catholic hospital, said miracles don't happen when medical evidence shows death is near.
"That's just not a realistic situation," he said.
Indeed, it is not, but I do have to wonder why, if God is omnipotent, miracles don't happen when the evidence is so unequivocal that death is near.
In reality, if anything this study actually is fairly reassuring in that it shows that most of the general public have a high degree of confidence in the ability of physicians and health care teams to make a medical and scientific judgment about when there is so little hope of recovery that continued aggressive care is futile. True, it does point out that a large number of patients' families have unrealistic expectations based on their religious beliefs and that these unrealistic beliefs can sometimes pose problems, but it is hardly good evidence of a major conflict between God and medicine or evidence that God somehow trumps medicine. It does, however, pose a problem in that large numbers of people (nearly 72.4%) believe that families have a right to demand futile treatment that doctors consider futile. This does not surprise me too much. What did surprise me is that 44% of health care professionals also answered the same way. This is a potentially problem, both from an ethical standpoint and from the standpoint of allocation of scarce medical resources.
On the other hand, when the questions are phrased in terms that highlight a some of the tradeoffs involved in the decisions, people are actually more reasonable than the reporting of the survey makes it seem. For example, consider the responses to these questions:
- "If doctors believe there is no hope of recovery, which would you prefer?" In answer to this question, 72.8% of the general public said that all life-sustaining treatments should stop and that the focus should turn to comfort care only; only 20.6% said all efforts should continue indefinitely regardless. In contrast, for health care professionals, the numbers were 92.6% and 2.5%, respectively.
- "Should efforts continue if they take medical resources and personnel away from other patients more likely to survive?" To this question, only 28.8% of the general public answered yes; 56.1% answered no. Health care professionals answered the question similarly: 23.3% yes and 62.8% no.
One suggested conclusion of this study is that, with sensitivity, this problem of unrealistic expectations based on religion can be overcome and that it is quite rare indeed that physicians can't overcome such beliefs to the point where they have to try to overrule a family that wants everything to continue to be done past the point of futility. Sometimes, however, it takes time and patience. Insisting on "pulling the plug" immediately is almost always a recipe for disastrous conflict.
Another way of looking at the results of this study is not just to focus on religion, even though so many of the news stories reporting on it played the "God versus doctors" angle, sometimes to a ridiculous degree, and some antireligious bloggers have predictably taken these simplistic news reports of a more complex study to make snarky comments about doctors having to pander to "stupid" or "religiously deluded" Americans that make me glad indeed that none of them are physicianss. They have zero clue how necessary it is to deal nonjudgmentally with all sorts of unscientific beliefs, be they religious or not, and mockery is not a fruitful approach; moreover they miss the other aspects of the study that show that, despite these beliefs in potential miracles, people actually are more reasonable than the news stories make it appear.
In any case, the focus on religion takes away the focus from the real issue: improving public understanding of scientific medicine and what it can and cannot accomplish. Lots of patients have unrealistic beliefs about health care based on all sorts of things, be they religion, faith in pseudoscientific quackery, or just fears based on misinformation that is rife in the media (i.e., the claim by antivaccinationists that vaccines cause autism). Although I may rail about such irrationality on this blog when it gets out of hand, it's important to remember that a blog is not real life. It's a different venue, one designed to educate and entertain a general audience, not to mention to indulge my personal beliefs about the importance of science in medicine and my fears of the problems irrationality and anti-science cause in medicine and society at large. Persuading families and patients that what and evidence-based medicine recommends is the best for their injured or ill loved ones requires a far gentler touch.
ADDENDUM: Steve Novella comments. He discusses primarily the part of the study that notes that 72.4% of the public thinks that family members should be able to demand care that physicians deem futile for their loved ones. I didn't dwell on that part of the study, but it is a result that is quite important in and of itself, especially the second part, which is the question of who should pay for such futile care insisted upon by the family against medical recommendations. The answers broke down thusly for the public: The insurance company 48.5%; the government 6.1%; the patient 37.0%. For health care professionals the numbers were 30.5%, 1.4%, and 54.8%, respectively.
REFERENCE:
Jacobs, L.M., Burns, K., Jacobs, B.B. (2008). Trauma Death: Views of the Public and Trauma Professionals on Death and Dying From Injuries. Archives of Surgery, 143(8), 730-735.
Thanks for writing about this. After reading the article I was interested in the study itself, but don't have access. I have many, many questions about it. Perhaps I'll return later to ask some of them.
Bravo! This post should be added to the curricula of every health profession. I suspect that your experience is generalizable to most professionals who deal with dying patients in hospital settings.
I lost count of the number of times I've dealt with family members who want every possible measure taken despite the patient being in an active dying process.
One of the last encounters I had was with an adult son of a trauma patient who, even after the hospitalist was starkly explaining brain herniation and dying (at that point on the margin of brain death - waiting the last evaluation to declare), repeatedly insisted that "God will work a miracle." I finally just repeated to him that his family member was dying and that nothing we could do for him would change that.
I think that some of this reaction is attributable to the sense of shock and surrealness experienced by family/friends trying to make sense of a profound loss. In my view, the reaction is akin to wishing for magic/fantasy to become reality. I think it's a psychological protective mechanism to cushion the blow of loss and to prolong the sense of having the person still active in one's life.
Your points about the time compression and difficulty in establishing a trusting relationship is significant. Often, the family are looking for the person who provides them with the closest version of the answers they WANT to hear. When you are the one messaging exactly what they most fear and dread, it isn't surprising that they express a reversion to the unknown comfort of the mysticism and myth of miracle and divine intervention.
/.02
Well, lookee there - this is interdisciplinary research. I thought it smacked of nursing perspective. *grin* (link to the study at my name)
Well, lookee there - this is interdisciplinary research.
But no sociologists, oddly.
(link to the study at my name)
I still can't access the full article. :(
Does part of this also relate to the tv dramatisations where people intervene/pray at a bedside and call back a family member from death? How many times has a scenario like that played out on House or other dramas?
This paper looks like a nuanced account of trauma and end of life care. I wonder if the newspaper account reflects some spillover from the number of people who frequently hear about cases where people 'miraculously' survive although 'doctors had sent them home to die' (something you have covered several times).
Waiting for a miracle... miracles, miraclism, and discrimination has a slightly odd but interesting discussion about the appropriate use of resources.
Mac Manus et al. were disappointed that their careful examination of unexpected long-term survival after low-dose palliative radiotherapy for non-small cell lung cancer was reported in various newspapers in the following terms and also as 'miracles':
Beautiful post, Orac. It's a lot more, uh, rational than the norm around here for topics involving rationalism.
As often with these survey polls, I have an issue with the wording of the question. "Would you believe that divine intervention by God could save your family member?" can really be thought of as two different questions, one theological and one practical. Theologically, surely an omnipotent creator of worlds could save the family member. But practically, is he likely to do so in the case of your family's particular medical trauma? After all, everyone dies eventually, God allowed the accident in the first place, and Heaven is better than this life.
A better question might be to ask that if the doctors had declared futility, do you think the possibility of a miracle would warrant continued treatment. That formulation would avoid possibly inflated numbers from people answering the purely theological question.
Do God and prayer trump scientific medicine? Yes. I have a brother, uncle, sister, brother-in-law, and cousin who are all proof of that.
Great article and commentary, Orac.
"Back when I used to cover trauma, I thought that the presence of family in the trauma room was very distracting to me in my desire to do my utmost to save the life of the patient, and I feared that the rather nasty sites, sounds, and, yes, smells of a resuscitation could traumatize the family member. On the other hand, in the case of a conscious patient I can well understand how the presence of a family member could be reassuring."
The worst code I ever ran with family present was what cinched my agreement with the conventional wisdom taht family at bedside is good. A 40's year old man had an acute MI and went into VF. His parents were both there when he coded. Mom was taken out to the waiting room by the nurses, but Dad wouldn't go and stayed up against the wall and watched the whole thing. For over an hour we ran the code... we'd defibrillate him and he'd go back into sinus for 5 beats then re-enter VF. I gave him everything plus the kitchen sink twice over. I literally *broke* one of our defibrillators I used it so many times.... we had to switch to the back-up. I thought about Dad couple of times and worried that the sites, sounds (and smells after we'd defibrillated him so many times) would be too much. But he stayed quiet and out of the way so I mostly ignored him. After the code finished and we could not resuscitate his son, I talked with them. The mother was in shock/denial/bargaining, but Dad was very peaceful and thanked us for letting him be there. He said he could see how much we tried for his son and how hard his son tried and he knew that there was nothing else that could be done.
The contrast between him and his wife was dramatic. Now that may have been just that he and his wife have different personalities, but it seemed to me that with him there he was able to go through the same sort of emotions that we did.... the panic as he goes into VF the first time, the repeated adrenaline rush as you try to save him then excitement when you get a pulse back followed eventually by a realization that the pattern was trending toward not getting ROSC, then the realization that the code is futile and acceptance that he is dead. He couldn't intellectually understand it in the way we did, but the dynamics of the group both verbal and non-verbal helped him to experience the same thing with us. And when it was done, it seemed that everyone in the room agreed that it was time to stop - including Dad. I think that is what you touched on when you remarked about your hollywood codes as a flight surgeon.... its the group dynamic that needs to come to the realization that all is futile. Especially in an emergent situation where you can't sit down to explain to people without a medical background why it's not possible and that a miracle won't happen.
Now that doesn't always work with every family. I have had to eject people twice in codes where I have had family present (both were panicked parents of young children and one was a pediatrician-dad.) But that's out of dozens where I have had family present - including pediatric resuscitations where the parents were fine. So despite seeming like about as good of an idea as putting out a fire with gasoline, it actually does help.
What I find curious is that the study suggests that belief in miracles motivates kin to demand continued treatment. If you think that a miracle can save the day when doctors say that they can't, why would you care whether or not treatment continues?
What accounts for the combination of extreme optimism(that a miracle will show up and save the day, even if doctors say game over) and fairly extreme pessimism(a miracle will save the day; but apparently not if we stop treatment)?
"What I find curious is that the study suggests that belief in miracles motivates kin to demand continued treatment. If you think that a miracle can save the day when doctors say that they can't, why would you care whether or not treatment continues?"
I was interested in this aspect as well. An all powerful intervention that overcomes physical realities can operate just as well regardless of what medical decisions are made. And yet many people seem to consider the possibility of a "miracle" as relevant to whether or not to prolong otherwise seemingly futile treatments, as if they think that they are giving the miracle more time and chances in which to happen.
That makes little philosophical sense in terms of a conventional theistic god. But it makes all the sense in the world in terms of a much more primal belief in magic and superstition, and the more fundamental definition of "miracle" that I think is too often confused for divine intervention: just the hope that maybe, just maybe, something crazy will happen, just happen because it's one of those crazy things we can all hope for.
Just like grief, I think that the hope for miracles is something that is actually much deeper and bigger than this or that theology can contain or rationalize or inform.
I don't want futile care at all.
The thing is, I believe miracles happen. But they don't happen at random, they happen because the individual works for them. And according to my religious beleifs in the end the best thing for a person is to move on to the next life and take another step forward. Why would a miracle save a person's life? The individual is unlikely to change the direction of their life unless they are quite young, and is more likely to change it in the next life. For the sake of the family? Why force a person to suffer longer simply to give their family temporary joy? I have never understood why a person would bank on a miracle. Even if you do not believe as I do, why would a god single out one family in particular and one patient and not save the millions of people who are equally worthy and sick?
As for the bit about family in the trauma rooms... IF the patient is conscious, they should always be allowed to have family in there for their sake, and if they are not conscious, family should be allowed in only if they are not belligerent and follow instructions from the doctor (ie, get back etc). I would not want to have to be in a scary situation and conscious without someone with me who I recognize, and I would very much want to know what was happening if my boyfriend ever had to go to the hospital.
Also this reminds me of another rant... People who bring their dying loved one to a hospital, demand that doctors do all they can, the doctors work very hard and save the patient's life against the odds, and yet for some reason it's a "miracle" and "God saved him." And apparently the doctors performing heroic measures did nothing?
Nicely written.
A certain amount of compassion also peeked out from behind your professional objectivity, and that quality, as much as diplomas on the wall, is essential for a good physician.
The poll itself had one glaring flaw. It asked people if they thought God "could" save the life of someone on whom physicians had given up -- not "how probable" it was that God would do so.
As a double-PhD from a family of four MDs, I believe that God *could* save the life of a dying person. However, based on human history and personal experience, I believe that such occurrences are rare.
Wow so many touchy issues here.
When to give up? Some years ago while visiting a relative at a hospital, I encountered one, a man who had had a heart attack near the hospital, but was not discovered for a number of minutes. Unfortanetly he was seriously brain damaged, and doomed to spend the rest of his live (he apparently had been an engineer) wandering the halls of care facilities in a daze. Sadly his 'miracle' was perhaps the worst thing that could have happened to him (I have DEEP fears of that happening to me ... I desparately want to go out while I'm still relatively intact). I can think of no more frightening eventuality than to live as a caricature of myself
On the other hand, a quasi relative was recently 'killed' in a road crash, except that an EMT happened to witness the accident and restarted his heart. Aside from a concussion and some body damage (no broken bones, however) he is in surprisingly good shape...
Such a tough call
When someone is terminal people will fall back on what they think will help the most. If it's God OK, but I fall back on science. I will take informed action any day of the week.
Re: the contradiction between believing in miracles and wanting further care.
Actually, there is no contradiction. See, laypeople like me have little to no understanding of modern medicine. Remember the saying about suffiently advanced tech seeming like magic? What you do IS miraculous to us.
I have a question about how ScienceBlogs works. Quite often, there are five or more articles on the same topic that appear simultaneously. Is that just because you are all reading the same news, so you independently decide to blog about it, or because you have some kind of coordination about blog topics, or just because one post inspires other posts?
Orac, thank you for this wonderful piece. I started reading it this morning in my RSS reader and I am so glad I came back for the ending. I do communications for a medical center so I'm never in situations like the ones you and others described here. But I do often interview cancer patients and their families who want to share their stories.
I see the caring relationships between our doctors and nurses and the patient and family. There is true trust built up over time. The result of this is that the families who are most grateful for the care they've received, who keep in touch and come back to visit, are most often those whose loved ones did not survive. This is due in part to the bad memories and associations that many survivors have when they come back to the hospital. But it's also such a profound testament to the the care and engagement of doctors. Many oncologists I've spoken with point to this engagement and long term relationship as the reason for picking this emotionally-trying specialty.
Orac, this was one of your best posts, in my opinion -- not only very well written, but very respectful and evenhanded, quite sensitive to all facets of the issue (including several that would never have occurred to me). I appreciate you carefully walking us through all the considerations of this tangled topic.
phisrow wrote:
The same thought always occurs to me regarding this sort of question. If there were going to be a miracle, wouldn't it happen whether treatment were continued or not? In fact, doesn't the demand for continued treatment effectively acknowledge that there is no serious expectation of a "miracle" being likely to happen? That's how I see it.
Karen's poignant reference to Clarke's Law notwithstanding, a "miracle" is, by definition, supernatural; by the standards of those who claim to believe in divine miracles, it should be no more trouble for God to "miraculously" heal a trauma victim from death, AFTER cessation of treatment deemed futile, than to tweak his failing body systems just enough that an otherwise futile treatment unaccountably works (at least well enough to keep him alive, if never again especially whole). As Karen points out, it is the doctors who are capable of what we casually call "miracles"; so if the doctors are the ones saying that there's no hope, it's a pretty strong bet that they're right.
Thus, demanding that futile treatments be continued is a grave waste of resources, and such a decision is grounded in grief, not in rationality. Grief is understandable and lamentable, and I deeply sympathize with anyone having to cope with it, especially without warning -- but it is a poor guide in decision making.
~David D.G.
Annie said: "One of the last encounters I had was with an adult son of a trauma patient who, even after the hospitalist was starkly explaining brain herniation and dying (at that point on the margin of brain death - waiting the last evaluation to declare), repeatedly insisted that "God will work a miracle."
At that point, I recommend moving the patient and the family to the chapel so that the ER or ICU staff can help patients who have a chance of surviving.
My daughter nearly died from trauma at age 7, so I can empathize with family members of severely injured patients. But, my empathy disappears when caregivers are hit with "God will save him" and "You must do everything possible to keep him alive." Hey, if God's going to work a miracle, he shouldn't need help from doctors and nurses.
Miracles? They do happen. If you define it as 'a statistically very improbable event'.
There are known cases of patients waking up after long PVS period. There are also cases (VERY rare) of self-curing from cancer.
So I think there IS a hope of miraculous healing. But it does not require divine intervention.
You have a point, of course.
As a Christian, of course I believe that God could save my loved one's life. I just don't expect it.
One hopes that the doctors have the wisdom not to say, "there's no hope," but instead "there's nothing more I can do."
The classic old-movie line is "it's in God's hands now." Hard for the religious to argue with that one.
Orac - completely off topic, but I thought you might appreciate the following cartoon: http://www.swamp.com.au/archives.php?ch=8&c=8406
A Canadian radio host was talking with a woman going through a high risk preganancy. My favorite bit of the interview came when the interviewee talked about how her mother would send her clippings about similarly high risk women delivering healthy babies.
"Invariably the headline would read "Medical Miracle". I tracked one of these women down and her comment was "It wasn't a medical miracle. It was very good science.""
Very nice piece. Thank you.
Regarding this: "large pluralities of both the public and health care professionals characterize their religious beliefs as either "very" or "somewhat" important in guiding their decisions about medical care in the event of critical injury."
I'd say my religious beliefs would definitely and strongly inform my decisions. My religious beliefs are basically {no god, no afterlife}. Therefore I have no religious push to wait for miracles, or to rule against suicide. My choices would be for palliative care until it's no longer workable, and preferably euthanasia if things get too bad. With organ donation.
I think that specific question might be badly phrased. I'm not sure that my response is what they meant to get at.
Along the same lines, I just read this blog post at Freakonomics that discusses a meta-analysis of intercessory prayer studies, claiming that an effect is shown (at least in the case of in vitro fertilization...). There's a similar meta-analysis from the same year which claims a null result (Masters, Spielman, and Goodson 2006), but I don't have the time to teach myself epidemiology and sort them out. Any takers?
http://freakonomics.blogs.nytimes.com/2008/08/18/pray-at-the-pump/
Just as a not-so-insignificant side-line:
How much of a distraction is all the religious crap for hospital staff in that the time consumed for the impossible is wasted when it could be used to help those that are not at a terminal stage?
Among an already over-worked staff, will the non-acceptance of the inevitable exhaust resources that could have been put to constructive use?
Has anyone ever looked into this side of the equation??
I don't know if it is a real-life problem, but when resources (doctors, nurses, equipment etc) are finite, dealing with those who cannot accept reality would be a serious drainage.
Speaking here from personal experience, but first a note from comparative religion.
I frequently see, in Scienceblogs, the use of the word "mysticism" where "mystification" is intended. This is mis-use of terminology, and to anyone familiar with the subject, comes across in the same manner as a layperson misusing medical terminology or asking for antibiotics to clear a virus. Someone PLEASE write an article about this so I don't have to keep posting my standard lecture on the subject:-) Here's the one-paragraph version:
Mysticism is the branch of religion that a) is concerned with "direct personal experience of God or the Ground of Being," rather than "as mediated via scriptural, denominational, or other authority structures"; b) is most accepting of science on science's own terms, c) usually correlates with above-average intelligence and capacity for abstract thinking (as contrasted to concrete thinking, which is more typical of a) scriptural literalist forms of fundamentalism, and b) various forms of "magical" belief systems). Mystification, on the other hand, refers to "making a mystery where none truly exists."
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From personal experience:
Age 46, presented to ER with symptoms suggesting a heart-related condition that had become an emergency. Subsequently diagnosed with pulmonary embolism caused by DVT. First day in the hospital I told the physician "If it's likely that I'm going to die, tell me that in clear language such as "you are probably going to die," and give me the probabilities if they are known. Feel free to use technical terms and I'll ask for explanations as needed." (etc.) The physician said, "when you came in here you had both legs hanging over the grave, but we think you'll make it." That was helpful.
Turned out my family and close friends were more upset about all this than I was; for some odd reason I was facing the possibility of dropping dead with something close to equanimity. I'm quite familiar with the literature: Kubler-Ross on stages of coming to terms with dyng; Moody, Ring, and others on NDEs. At age 11 (also 5 years before the aforementioned started publishing) I'd had a dream of "the hereafter" that corresponded remarkably strongly to the standard NDE accounts (as published later), so this may have had something to do with the willingness to face death squarely. (Yes, and I know well that if NDEs are brain artifacts or hallucinations etc., they can also be produced w/o being at risk of death, e.g. in dreams.)
(Note: this matter of NDEs including "dreams of NDEs", correlating with subsequent equanimity in the face of death, is often attributed to "functional" changes in beliefs (the psychology of the experience), but I strongly suspect that there are structural or neurophysiological changes involved. 35 years is too long a span for a purely functional (psychological) effect of that sort to persist, given other changes in personality and beliefs from childhood to middle age. Thus the suggestion that there may be changes to the brain; this could be a very interesting research topic. It is also possible that the causality works the other way: changes to the brain produce a) the NDE and b) the acceptance of death. If anyone has any cites on existing findings in this area I'd be very interested to know.)
My preference for care under extreme conditions is to do what is customarily done for equivalent patients, if that doesn't work, use me as a guinea-pig for something unorthodox you want to test; and if that doesn't work, then administer morphine at lower than normal dose (high sensitivity to drugs here) for the condition, and let nature run its course one way or the other. Discontinue respirator etc. only in the event of unrecoverable near-cessation of brain functioning (see below: Chalmers et. al.)
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Personal beliefs:
As a matter of science I agree with the Hameroff-Penrose theory of consciousness (orchestrated objective-reduction). As a matter of "philosophy of mind" I agree with David Chalmers' "interactionist" theory, which also predicts that even very simple brains can support "mind" as we know it, this being supported by Maye et. al. (voluntary behavior in fruit flies) and recent studies (no cite for this one sorry) re. self-recognition in magpies and in pigeons. Thus, even a low level of brain activity in a human, has a good chance of supporting some kind of conscious experience, and that qualifies as being alive and worth keeping alive until or unless permission is freely given for discontinuance of life support or provision of euthanasia.
As a matter of religion I tend toward a kind of deism, with components from Christianity, Buddhism, and other faiths. Keep in mind here that theology is ultimately not accessible to science: any entity having the characteristics attributed to a deity could also confound any experiment performed to test its existence, therefore no empirical evidence either way is possible. I also tend toward a belief that individual consciousness is the particularization by the individual brain, of a transpersonal "mind-like" element that is universal and pervasive; thus, that any sort of "hereafter" would be characterized by loss of individuation (anecdotal reports from NDEs aside).
So far as "miracles" are concerned; low-probability events are worth hoping for but not to be counted on. I agree with those above who said that if a deity can intervene, then it can do so regardless of medical intervention. Therefore, it is acceptable as a religious matter, to pray for someone's recovery after agreeing to discontinue medical means, until the person has been declared irretrievably dead; however, it is not acceptable to insist that medical personnel continue measures after they are demonstrated to be of no further use.
I also agree with the person who said that appropriate bedside manner is to say "we've done all we can do; this is out of our hands now," and then ask the family members about religion and respond compassionately within a framework of respect for their beliefs (e.g. that is not the time to proselytize for atheism).
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Word to the Wise dep't:
Our culture seriously needs to come to terms with acceptance of death. The denial of death, the bargaining, the raging, the desire for immortality on Earth, is absurd, illogical, and not in good faith.
What I find a remarkable contradiction is the degree to which people who profess strong religious beliefs can also be in complete denial and avoidance of death. Someone needs to "call this out" in public and, in essence, demand consistency. "If you believe you're saved and you're going to heaven, stop begging the doctors for one more intervention after it's already too late and there are three more trauma cases waiting in the hall."
Without exception everyone dies. Better to face it in a state of peace, than go kicking and screaming. What is sorely needed is more research on methods (perhaps even pharmacological) for getting people to the point where they can accept their own death and the deaths of loved ones, and face death with peace, even if it comes at an unexpected moment. Preventing or relieving the various sorts of anxiety, anguish, fear, and so on, should be considered as important as relieving overt physical pain.
I believe it is highly likely that there will come a time when truly effective interventions are avaialble to relieve the various sorts of extreme emotional pain associated with death (both the person who is going to die shortly, and their loved ones). By this I don't mean tranquilizers and antianxietals, but something else that works at a deeper level, perhaps to translate their belief-system about death into a strong input to their emotional state, or perhaps to invoke a transpersonal perspective that provides context. We will still shed tears for the loss of loved ones but we will not sob and wail; we will still miss them but we will not obsess about their departure. We will still treat our own eventual death as something to be postponed, but we will not imagine that we can put it off forever or cling to this life as if it's an addiction.
Whether any pharmaceutical company thinks it's worth going after a "dealing with death pill," remains to be seen. But if such a thing can be developed, it will be seen in retrospect as a turning point as significant as that which occurred with the development of the first analgesics and the first anaesthetics.
Isn't it interesting that those who think that god will miraculously save their relative also believe that the actions of the medical staff are required. Surely if god was capable of performing the miracle no other intervention would be required?
The government needs to slowly back away from our lives. Our nation was founded upon the principle of FREEDOM. I will not have someone tell me that I HAVE to vaccinate my children, or I HAVE to put them on life support if they are near death and suffering deeply. If I want to DIE, I have the right to DIE without some machine keeping my carcass alive. This is all about the pharmaceutical companies wanting complete control of the people of the United States. It is the beginning of COMMUNISM.
Orac, thank you for this post, which is both deeply compassionate and sharply analytical, in the best way of physician-healers.
To those who wonder why people would hope for divine intervention in cases of sudden trauma, or those who suggest that people ought not to wail or weep but just accept the inevitable, may I respectfully suggest that it's one thing to contemplate these things in the abstract and another to experience them?
I think one of the conceits of many educated people -- including myself -- is that cognitive or intellectual knowledge equals knowledge, period. But there is the kind of knowledge that can only be gained through experience, and that means that it is processed somehow through the body, whether it is weeping and wailing or being unable to speak or vomiting or what have you. Stunning shocks and grief aren't just dealt with in the head, and I appreciate Orac's wisdom and compassion in this post. We do process knowledge through our bodies and our psyches, and these move in ways that logic and 'reasonableness' (which latter just as often seems to mean 'acting in ways that others find convenient') does not.
Thanks again, Orac. Your patients are lucky.
Being one of the snarky anti-religious bloggers that Orac references in his entry, I'd like to take a moment to address something Anna K. said:
You mistakenly assume those of us who have said folks should accept the inevitable haven't personally experienced such a situation ourselves. Speaking only for myself I can say that I have had such an experience and, while I may understand the desire for wishful thinking to come true, it doesn't change my opinion on the issue.
Though I will admit that there's no one who thinks I would make a terrible physician more than I do. I think it's great that Orac has the patience and tact to be able to handle such situations. I doubt I would do as well.