Religious Coping, Medical Research, and the Popular Press: Updated

Updated 4-1-09

Regular readers may have already picked up on something that’s a major annoyance to me. I regularly get annoyed when the broadcast press (that is, aimed at the general public, whatever the medium) picks up on an article published in a major research publication. Most often, someone in the media has caught wind of an interesting article in a medical journal. Sometimes, it’s because someone associated with the study thought that the added attention would be good for the research effort (usually, in terms of public interest and/or increased funding).

In any case, I usually find that the folks who made the research public usually get something wrong. Perhaps they talk about hope for a medical breakthrough, while the study in question only hints that something like that might be possible a decade or so from now, if all goes right. Perhaps they make sweeping generalizations based on a small pilot study. Most often, the researchers try hard to qualify the information, and to make clear the limitations. Sometimes they’re complicit in the problem, more concerned about getting their point out than about being as accurate as possible.

The case in point was pointed out at by a colleague, one of the editors at Episcopal Cafe. First, he discovered an article in the March 18th Boston Globe with the sensational headline, “Religious dying patients more likely to get aggressive care.” Then, he discovered a related article in The Economist, titled “But not yet, Lord.” Both articles were reporting on an article in the March 18 edition of JAMA, the Journal of the American Medical Association, titled, “Religious Coping and Use of Intensive Life-Prolonging Care Near Death in Patients with Advanced Cancer” (Phelps, Andrea C, et al: JAMA. 2009; 301(11):1148-1154). Both the Globe and Economist articles hit home at the same point: that “religious” patients used more care at the end of life, suggesting that being “religious” was the cause of the demand for more intervention.

I have now had a chance to read the JAMA article closely, and have some comments to make. First, the Globe headline is simply inaccurate. The study used a specific instrument to measure religious approaches used by patients in coping with terminal illness. The instrument incorporated techniques labeled by those who developed the tool (good people, by the way) as either "positive" or "negative" - as either helpful or not helpful in coping. This study did not look at people who were "more" or "less" religious. It looked at people who used more or fewer of the "positive" religious coping techniques (to no small extent, because almost no participant used "negative" techniques). So, it was not whether participants were "more" or "less" religious, but whether religious participants did or did not use particular techniques. The JAMA authors themselves wrote,

Our findings should not be misinterpreted as denying the experience of many patients who find peaceful acceptance of death and pursue comfort-centered care because of their religious faith. Although religious coping is a theoretically appealing measure of functional religiousness, we can not say that positive religious coping rather than other religious factors (e.g. religiously based morals) completely accounts for the association observed.

In fact this is a concern about the RCOPE, the instrument used to distinguish those who used positive religious coping from those who did not. In the article, “The Many Methods of Religious Coping: Development and initial validation of the RCOPE” (Journal of Clinical Psychology, Vol. 56 (4): 519-543 [2000]; cited by Phelps et al in the JAMA article), Pargament, Koenig, and Perez note

Several limitations and remaining questions deserve some discussion. First, the results of the present analyses are cross-sectional and therefore do not permit causal inferences. While the methods of religious coping may have affected adjustment, it is also possible that different levels of adjustment elicited different forms and levels of religious coping….

It is also important to consider whether methods of religious coping work in similar ways for different people faces with different life stressors.

Since the RCOPE was given when patients entered the study, and perhaps well before facing the difficult decisions at the end of life, it could be argued that the life stressors at diagnosis of a terminal disease might be different from those when finally approaching death itself. Certainly, contra the conclusion misstated in the Glove and Economist articles, it is not clear that we can infer that greater use of positive religious coping, much less “being more religious” has any causal connection to the decisions to use more medical care at the end of life.

Let me comment further on the study itself. To begin with, let me note one piece that the Economist article got right: “More than 11% of those with the highest scores underwent mechanical ventilation; less than 4% of those with the lowest did so. For resuscitation the figures were 7% and 2%” Those are certainly statistically significant differences. However, they also point to the complementary statistics: that in the study group, among those with high religious coping scores 88% did not undergo mechanical ventilation, and 93% did not receive resuscitation. So, one has to wonder about differences between the 88-plus percent vs. the 11-plus percent, or between the 93% and the 7%, and what made the difference for them. Since both had high scores for positive religious coping, that may not be the determining factor.

That significant differences might still be of interest if the results of the study group could reasonably be generalized to all patients. However, I have some significant concerns about the study group. Phelps et all note that

"Positive religious coping was significantly associated with being black or Hispanic. Patients with a high level of positive religious coping were younger, less educated, less likely to be insured, less likely to be married, and more likely to be recruited from the Texas sites.

These facts are worth noting. Black and Hispanic patients quite frequently have a hard time trusting both the intent and the content of the health care they receive, based on long history of inequitable care. They can often express concerns that health care providers will “give up too soon.” Families of young patients often hold out hope, reflecting a tendency in our culture to cherish our children, and to favor those with a future over those with a past – even when, as for these patients, it is the future they should have had, and not the future they or their families wished. In their abstract the authors say that their findings are significant “after adjusting for age and race.” However, they are not that explicit in the article itself. Moreover, even if that is the case, these are important enough and well enough known medical social issues that they should have been addressed in the article.

I also want to note the comment that “Patients with a high level of positive religious coping were… more likely to be recruited from the Texas sites.” In fact 78% of those with a high level of positive religious coping (138 of 177), and 55% of all participants (181 of 345) were recruited at two sites in Dallas, Texas. While this is indeed a multicenter study, with participants from sites in Massachusetts, Connecticut, and New Hampshire, in addition to the Dallas sites, the participants could hardly be considered equitably distributed. The article does not consider whether there might be significant cultural and community differences between Dallas and the Northeast that might affect the outcome.

By the same token, 55% of those with a high level of positive religious coping (98 of 178) were either Baptist or Protestant, while only 26% of those with a low level of positive religious coping (43 of 167) were in those categories. Conversely, 45% of those with a high level of positive religious coping were Catholic, Protestant, or Other (80 of 178); while 74% of those with a low level of positive religious coping (124 of 167). This suggests that there may be significant theological differences among the demographic subgroups that affected the results on the RCOPE. In their discussion, Phelps et all comment that

Intrinsic to positive religious coping is the idea of collaborating with God to overcome illness and positive transformation through suffering. Sensing a religious purpose to suffering may enable patients to endure more invasive and painful therapy at the end of life. Alternatively, religious copers might feel they are abandoning a spiritual calling as they transition from fighting cancer to accepting the limitations of medicine and preparing for death. Religious patients might thus equate palliative care to “giving up on God [before he has] given up on them.” Qualitative studies commonly report spiritual reasons for preferring life-sustaining treatments, including a belief that only God knows a patient’s time to die. Finally, high rates of intensive end-of-life care among religious copers may be attributable to religiously informed moral positions that place high value on prolonging life.

They do not, however, consider how differences within their study group might have been attributable to such dynamics as these.

Also, let’s think again about the comment that “Patients with a high level of positive religious coping were younger, [and] less educated….” In my recent post reflecting on Do Not Resuscitate orders, and whether Allow Natural Death orders would be an improvement, I noted that a critical piece in care at the end of life is clear communication about the limitations of therapeutic medicine, and about changing goals of treatment from therapy to palliation – from cure to comfort. Combining issues of youth and education with cultural and language issues (issues that may well have been relevant for some Hispanic subjects) identifies points where that communication is more difficult, and at which patients and/or their families might misunderstand and resist changing the goals of care. I acknowledge that these patients all had received already a terminal diagnosis. That in and of itself doesn’t guarantee that all those in a critical position for decision making were of the same mind, or understood the patient’s needs and prognosis in the same way.

Finally, I have a concern that rises from the bibliography with the JAMA article. There is no evidence of review of the literature available in pastoral care publications. While regular readers will know this is a common concern of mine – that we don’t read each others’ literature – with a subject such as religious coping one might have expected some use of the literature of those professionals whose area of expertise is religious coping in health care. This is not to disparage the articles they cite. They do use, as noted, work from Koenig, Pargament, and Larson, who have contributed significantly to information about the interactions of religious behavior and health outcomes. At the same time, a thorough literature search might well have resulted in citations from the Journal of Pastoral Care and Counseling, the Journal of Healthcare Chaplaincy, or Chaplaincy Today.

And so, an interesting study that could have been better prepared and discussed was picked up by the popular press; and when the popular press got their hands on it they stretched the results well beyond what the original researchers had suggested. For me this is a particularly egregious example, because it strays into my own professional experience. However, it’s another example of a common occurrence: that the popular press takes one medical study and finds in it results that aren’t really there, or that have to be qualified far more than the popular press is interested in doing. I don’t suppose we’ll ever stop it. That doesn’t mean we don’t need to challenge it whenever it happens.

Update: An article has appeared now in the popular press challenging the JAMA article. Dr. Kate Scannell, a contributor to InsideBayArea.com wrote Faith, hope, and clarity at the end of life. Dr. Scannell noted an additional concern about the preponderence of participants from Texas: Texas is the one state with a medical futility law that can under certain circumstances allow a hospital to remove a patient from life support without family permission. As Dr. Scannell noted, "It's certainly conceivable that dying patients receiving care in those institutions might make unique medical decisions that fend against the perceived threat of being denied care." (And thanks to the blog Practical Bioethics for pointing to Dr. Scannell's article.)

General Convention 2009: Let's Get It Started

It's hard to think about it, but I've been at this blogging business for three years.  That's meant a lot of time at the keyboard.  I've enjoyed it, even if I've had my down times.  Still, it helps to be opinionated.

One of the ways I'm conscious that it's been three years is that General Convention is coming up again.  One of the reasons I began to blog was that I felt that things were done and said at General Convention that most Episcopalians never heard about, much less thought about.  So, one of the tasks I had was to begin writing about issues to addressed at the 2006 Convention, and about issues that had been addressed there or at previous Conventions.

Well, I still feel that way, and here we are with another Convention rolling around.  Today the Blue Book, the collection of reports and proposed resolutions from commissions, committees, agencies, and boards of the Episcopal Church, was released.  You can read the Episcopal News Story about that here.  You can access the reports themselves here.

I encourage you to look at the various committees and read some of the reports.  I've begun doing that, and you should begin seeing the results of my reading soon. 

So, watch this space.  General Convention convenes again this July.  So much to prepare!  So much to talk about!

Choosing the Right Words

So, the Church of Nigeria – Anglican has officially recognized the new ecclesial entity, the Anglican Church in North America (ACNA). Well, we knew that was coming, didn’t we? The fellow travelers have been working hard at this and saying it was coming for some time now. The Church of Nigeria has considered communion with the Episcopal Church “broken” for some time now; and changes made to their constitution in 2005 simply codified that, if implicitly. Their efforts at missionary work in the United States, which in part laid the foundation for the ACNA, demonstrated that they felt there was no relationship with the Episcopal Church to be injured. So, now they have confirmed their effort to support this new body, which is intended to replace the Episcopal Church, in their esteem if not in any institutional sense.

So what should we say to these things? What should we say now that what has been predicted, even desired for some time, has now come to pass?

Nothing. To this, right now? Nothing.

It’s not that this doesn’t annoy me. It annoys me as it annoys many. I’m as annoyed as anyone when partisans suggest that I’m not Anglican, or even Christian. I’m annoyed when partisans proclaim the 700 or so congregations and 100,000 or so total members in such a way as to suggest that all were once Episcopalians, and that all – congregations and members together – have all left the Episcopal Church since General Convention in 2003. I’m not saying that none have. I am saying that most of those congregations, and many of that 100,000 were never Episcopalian; and many of those who were left long before, over Prayer Book and ordination of women.

But, we’ve known this was coming. We’ve known it at least since the Hope and a Future Conference of the Anglican Communion Network in November, 2005. In that gathering Henry Orombi called for the participants to “come out,” saying, “We will support you.” Peter Akinola said, essentially, “What are you waiting for?” And Robert Duncan said, “There’s no way for these two conflicted faiths to live under the same roof.” Sure, they took more time than I expected – more, too, I think than they expected. But we’ve known it was coming.

And, it doesn’t really have that much of an effect on us. That is, I think most of those who will leave the Episcopal Church have already left the Episcopal Church. Periodically, I read someone who speaks of hosts leaving, or of the Episcopal Church “bleeding out;” but it’s basically rhetorical excess. Instead, we have a new church institution on the block – and, since ACNA wants to incorporate some of the smaller groups that left over the past 40 or so years, perhaps that will result in fewer institutional structure, rather than more. As regrettable as some might find it (including the Archbishop of Canterbury), the Anglican tradition in North America is entering a state like the Orthodox tradition in North America: a variety of churches representing different facets of the same tradition, nominally acknowledging one another (which is better than some of the active sniping of the past) and going about their business. For a generation and more there have been churches calling themselves Anglican, existing initially in contradistinction with the Episcopal Church; and after some tension at first, having little or no impact on the Episcopal Church. A generation or more hence our successors will likely see this in much the same way.

Oh, there are some property disputes to settle, and plenty of rhetoric to exchange, but those will pass. Undeniably, the relationships among the national and provincial churches that now make up the Anglican Communion will change; but we will all adjust. Eventually, all of us on all sides will discover that we have something more important to be concerned about, something that speaks more to our sense of mission than fractiousness and fragmentation within the Anglican tradition.

Now, some things will indeed be harder in the short term. I’m going to be particularly interested to see just what Archbishop Williams says this summer to the General Convention about the Covenant he so desires. With this much damage already done, and a strong sense among some here that his attitude of “institutional communion at all costs” has largely contributed to this, the Covenant may be a hard sell.

But what should we say to this event?

Nothing. At this point, there’s nothing new, nothing shocking, and really, nothing to say.

Well, except, “God be with them, and with us. God be with us all.”

DNR and AND Orders: How Not to Do Too Much

Last week one of the administrators in my hospital came to my office. The topic: was it appropriate for a particular patient to have written a “Do Not Resuscitate” or “DNR” order? And, if such an order were written, should that affect the plan for care for the patient in question?

That isn’t an unusual question in health care, nor in my practice. Until recently I had been for years the Chair of our hospital’s Ethics Committee, and I still serve on it. I also provide education for nursing staff on Health Care Treatment Directives, Durable Powers of Attorney for Health Care, and Do Not Resuscitate orders, and how our policies direct their use.

And in fact the issue was already bouncing around in my mind. I had recently run across an online article from USA Today, titled “'Do not resuscitate' vs. 'allow natural death'” There has been discussion for some time in health care about changing the phrase “Do Not Resuscitate” to “Allow Natural Death.” The USA Today article discussed the topic, especially in light of research published last year suggesting that, all other things being equal, families and perhaps patients themselves would be more comfortable making a difficult decision at the end of life if the decision was phrased as “allowing natural death” instead of “withholding resuscitation.”

The research article, “’Allow natural death’ vs. ‘do not resuscitate:’ three words that can change a life,” was published in January of last year (Venneman et al, Journal of Medical Ethics, 34 (1), pp. 2-6). The authors were themselves interested in this question. They noted that words are emotionally laden, and some phrases more laden than others. They also noted that people made decisions differently under emotional stress than when not under stress. Their central concerns were that the phrase, “do not resuscitate,” being stated in the negative (“do not”) could be heard as threatening in tone, and that those hearing it as threatening would make decisions about a patient’s health care based on the emotional reaction instead of on a clear discussion of the patient’s needs and the limitations of medical care.

So, to check this out they put together a study. They decided to put together a survey. They also wondered whether it would make a difference how much education and experience one had relevant to DNR orders. They thought, too, that nurses should be considered because in actual events nurses are very much involved in carrying out DNR orders, and in discussing them with and explaining them to families. So, they surveyed three groups to consider different levels of experience: experienced nurses in practice; nursing students; and a non-nursing control group. Each participant was given a written scenario about a near-death experience, which included definitions of the medical terminology in the scenario. They were asked to consider the scenario as for a member of the participant’s family. They were then asked to mark an analogue scale (0 to 100%) as to the probability that the participant would consent either to a “Do Not Resuscitate” order or an “Allow Natural Death” order. They also recorded some demographic information about participants.

The results of the study were that in all three groups participants were more likely to consent for a loved one to an order of “Allow Natural Death” than to an order of “Do Not Resuscitate.” There was also a difference according to levels of education and experience. While experienced nurses, those most likely to understand the orders in either form, were more likely to agree to AND than to DNR, the difference was not great. However, among both nursing students and the non-nursing control group the difference was significant; and more significant among the non-nursing control group than among the nursing students. They also noted that demographic “variables of gender, ethnicity and religious affiliation did not significantly impact endorsement. AND was statistically more likely to be endorsed even controlling for these variables.”

In their conclusion Venneman et al stated, “Increased support of the order through changing the title [from DNR to AND] should decrease tension and conflict during the consent. This would result in decreased emotion and therefore enhanced communication.” They also suggested, “Using the term AND should help eliminate difficulties in interpretation resulting from phrasing the directive in the negative “do not” and decrease negative semantic reaction, allowing all involved parties to focus the actual outcome of the order.”

This article did stimulate a response article. The article, titled “’Allow Natural Death’ is not equivalent to ‘do not resuscitate’: a response,” was published in December, 2008 (Chen and Youngner, Journal of Medical Ethics, 34 (12), pp. 887-888). Drs. Chen and Youngner challenged both assumptions and conclusions of Venneman et al. They suggest that, while DNR might be “more negative” than AND, the precipitating situation is not: the limits of what medicine can do are being reached. At that point they suggest that understanding and communications are less dependent on emotion-laden terms than on clear communication in discussion with physicians.

They also suggest that AND may not be less confusing than DNR in that AND is focused on a specific, expected, and unavoidable result: the patient’s death. DNR, on the other hand, may be appropriate if a patient would not want the rigorous efforts of chest compressions and electric shock in the event of an arrest, but who still has the possibility of some therapeutic or palliative benefit. Thus, a DNR order does not automatically imply that a patient is terminal, much less that the plan of care is for comfort measures only. However, they point to studies that suggest that “healthcare professionals tend to provide less medical care to DNR patients than to those patients without DNR orders.” So, while DNR and AND are not really interchangeable, there may be a tendency for healthcare professionals to act as if DNR were in fact AND. If so, providers might not discuss with patients and/or families the full range of possible treatments and their respective benefits and risks.

Finally, Chen and Youngner challenge the interpretation of the results of the survey. Specifically, they note that among the practicing nurses the difference of choice between DNR and AND was not significant. Thus, they question whether there is really a desire among practicing professionals (either the practicing nurses who were surveyed, or among doctors, who were not) to replace DNR with AND.

As a chaplain I have been aware for some time of the discussion about changing from DNR orders to AND orders. That desire has certainly come from a concern among chaplains, and others, that families may not hear clearly, and certainly have trouble accepting, when the therapeutic limits of medicine have been reached. In that instance, would it be clearer to present as appropriate the decision to “allow natural death?” If death is unavoidable, it might well be more appropriate, independent of the thought that it might be easier to hear and accept.

When thought through, it becomes clear that the two terms are not really interchangeable; and the differences can be important. Venneman et al are certainly correct in noting that the DNR and AND are semantically different; but they may not make clear just how different they are. Chen and Youngner are correct in noting that AND is focused on, and indeed is explicit about, an unavoidable death. Yet, in the circumstances of a hospital just how “natural” is such a death? In fact care does not end at that point. Instead, it changes. While therapeutic benefit – curing, healing – might no longer be possible, care continues for palliative benefit. Death, then, may well not be “natural” in the sense that things don’t just stop; but it may well be better than “natural” in that the resources of care continue, with the intent changed to preserving comfort.

On the other hand, “do not resuscitate” certainly is a “negative” order. As my Best Beloved observed as we discussed it, it implies that resuscitation is normative, and the new order not to resuscitate is the exception. If therapeutic benefit is still the goal of care, an exceptional event might justify an exceptional order. So, an elderly patient might well hope the orthopedic surgery will be successful, and still not want heroic measures if in the process the patient suffers a massive stroke. At the same time, death is normative, sooner or later. Yet, without good communication from the physician(s) that there’s no therapeutic benefit left to offer, how is a patient and/or family to accept the “exceptional” order?

Moreover, in so many cases aggressive resuscitation is the last thing that professionals want to inflict; and I use the word “inflict” advisedly. Chest compressions can and do break fragile ribs, and too often pierce lungs. Electric shock is a visible physical shock to the body. In the situation where best medical advice is that it will not succeed, doctors and nurses don’t want to do CPR under the rubric of “first, do no harm.” Doctors will frequently press a family for a DNR order, even when the family has not yet understood that we’ve reached the limits of medicine, simply to avoid treating the patient in a way the professionals see as explicitly harmful.

On the Business Journalist

At our house we’re fans of both John Stewart and Jim Cramer. After all, they’re not as different as they seem.

So, you can imagine we watched last week the made-for-television back and forth between them. It started with Stewart’s satirical critique of punditry at CNBC, and culminated in the interview of Cramer on Stewart’s show. We watched it all; and while we also appreciated that, first, the critique was about business journalism in general, and CNBC in particular, and so it was, as Stewart said, “unfortunate” that Cramer had become the face of it; for Cramer had gone out on a limb more than once trying to advise his beloved “home gamers” appropriately. Second, Cramer in the interview did try to take what he would call “the high road,” not getting into a fight, but trying to respond quietly, and where he felt he should, apologetically.

That said, I was disappointed, then, by Cramer’s comments yesterday on the Today Show. He said it was really misinformed to say that business journalists “had caused” the economic crisis.

I was disappointed, because that’s not what Stewart said. What Stewart said was that it was an important part of the role of a journalist to be skeptical about sources. What he meant when he said that he wanted Cramer the business journalist to protect him from Cramer the hedge fund manager was that, if Cramer wanted to be considered a journalist, being investigative was an essential part of the job.

Now, I have to say I have a certain skepticism in general about “business journalism” on the cable channels – or, more accurately, about “journalism” on the cable channels. I don’t think of, and don’t usually speak of those channels as “news channels,” their chosen names notwithstanding. I think of them as Opinion and Editorial Channels – Op-Ed Channels, or perhaps now Punditry Channels. That’s because I find little news on them. I find little new information, and lots of opinions. Now, sometimes those assertions are identified as opinions, and sometimes their asserted as if they were facts; except, facts have sources that can be acknowledged, even if the acknowledgement is as vague as “the folks I’ve been talking to.”

CNBC is as much a Punditry Channel as any of the rest of them. Jim Cramer is a pundit. Now, he also does some journalism. He does on his shows share information that would be hard for his “home gamers” to ferret out. However, the bulk of his show is punditry, his educated opinion, expressed for the interest of his audience. I certainly believe he wants to do well by his audience. I believe his audience is a lot broader than most of his colleagues on CNBC, who seem to be talking only to other folks in the investment industry. I believe his principles, and especially his own principle of not taking anyone’s opinions – even his own - uncritically when making financial decisions, are good principles.

That’s why I was disappointed that he didn’t get it. Stewart’s challenge wasn’t about whether business journalists had caused the economic crisis. It was about the group as a whole leaning so into their connections with business that they failed to be skeptical and investigative as journalists. And it is that very skepticism and investigation that would provide the rest of us with real news, really new information, and so enable us to make the kind of good, careful decisions that Cramer himself advises.