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 ; 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.)