Religion and end-of-life care

ResearchBlogging.orgGiven that I’m the proverbial lapsed Catholic cum agnostic, religion just doesn’t play that large a role in my life and hasn’t since around six years ago. I don’t know if I’ll ever discuss or explain on this blog what the last straw resulting in that transformation was (it’s too personal), but a couple of years ago I did go through a period where I became hostile to religion, perhaps spurred on by PZ and the whole anti-religion gestalt of the ScienceBlogs Collective here. That lasted maybe a year or two, during which time I did what every new disillusioned ex-religious person seems to do (reading books like Richard Dawkins’ The God Delusion, for instance) but eventually my hostility abated, as regular readers may have noticed by the topics and writing tone right here on this very blog. (Don’t worry, quackery and the antivaccine movement still get me as worked up as ever–perhaps even more so.) These days religion just doesn’t matter that much to me one way or the other, except for when it interferes with concrete things that matter, such as patient care, the teaching of science, or civil rights. Since then, for the most part it’s been live and let live.

That being said, I still maintain a healthy interest in the interface between science and religion or, more specifically, the interface between religion and medicine. That’s why a study released in the Journal of the American Medical Association yesterday caught my interest. A news story in the Los Angeles Times about this study describes it thusly:

After she was diagnosed with Stage IV breast cancer that had spread to her left lung, Gloria Bailey’s doctors recommended she have a mastectomy followed by hormone therapy to fight the tumors that remained. She followed their advice, but had a nagging feeling about the regimen.

“The Lord was just telling me, ‘They’re not being aggressive enough,’ ” Bailey recalled. So she sought out a new team of oncologists at the Cancer Treatment Centers of America’s Midwestern Regional Medical Center in Zion, Ill., more than 300 miles away from her home in Michigan. Those doctors suggested she undergo a bone marrow transplant, a harrowing ordeal that landed her in a coma.


Before I go on, I can’t help but comment on the Cancer Treatment Centers of America, which are well known for being very woo-friendly. Apparently they aren’t too keen on a firm scientific basis for how they use science-based therapies, either. Bone marrow transplantation for advanced breast cancer fell by the wayside a decade ago because clinical trials showed that it doesn’t work; it doesn’t prolong survival in breast cancer patients. Performing a bone marrow transplant for breast cancer is simply not indicated outside the context of a clinical trial. In this case, the Lord wasn’t up on science-based medicine and led Mrs. Bailey astray, I’m afraid.

But I digress. The real point of the study was this:

Faith in a higher power can often lead to more aggressive treatment than is medically warranted, research is beginning to show. As a result, the nation’s medical community is now grappling with the best way to bring God into the doctor-patient relationship without subjecting patients to needless suffering before they die.

In a study published today in the Journal of the American Medical Assn., researchers found that terminally ill cancer patients were nearly three times more likely to go on breathing machines or receive other invasive treatments if religion was an important part of their decision-making process. Such treatments didn’t improve a person’s long-term chances, however.

The finding that religiosity is correlated with the pursuit of more aggressive therapies in cancer is not new. There has been a body of evidence developing over the last few years suggesting that more highly religious people are more prone to pursue more aggressive treatments, to be less likely to understand the meaning of a “do not resuscitate” order, and an increased preference for what would be considered heroic end of life measures when compared to less religious people. Examples cited in the news story and the study itself include a studies showing that religious cancer patients who failed chemotherapy were twice as likely to want heroic end-of-life measures, that patients with advanced stage lung or colon cancer were more likely to want full codes, CPR and all, plus mechanical ventilation and ICU admission if they believed in divine intervention. In addition, they were less likely to have set up a living will. Knowing what I know and having seen what I’ve seen, I can’t understand it. I’ve seen patients with advanced cancer die; heroic measures only prolong the agony–if they even do that. Indeed, although I watched my mother-in-law waste away from metastatic breast cancer, I was happy that she had chosen hospice.

Previous studies aside, though, there had never been any evidence to show that these expressed preferences actually followed through with them. This study, performed by a group led by Holly Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute aimed to answer that question.

What Prigerson and her team did was at the same time straightforward but brilliant. Basically, these results were part of a larger study known as the Coping With Cancer Study, a multi-institutional investigation of patients with advanced cancer and their informal caregivers. The study was funded by the National Cancer Institute and the National Institute of Mental Health and was designed to examine the relationships between psychosocial factors, with a focus on religion and spirituality, and end-of-life outcomes such as use of aggressive medical care and quality of death. Participants with advanced cancer and their caregivers were surveyed using the Brief RCOPE, a validated 14-item questionnaire that assesses religious coping. the Brief RCOPE examines the extent to which patients engage in seven types of positive religious coping (“seeking God’s love and care,” for example) and 7 types of negative religious coping (“wondering whether God has abandoned me,” for example) using a 4-point Likert scale from 0 (not at all) to 3 (a great deal). The results of this survey were then correlated with how these patients actually coped with end of life care. Patients were also examined with another instrument and underwent the Structured Clinical Interview for the DSM-IV Axis I Modules to assess if patients met diagnostic criteria for panic disorder, major depressive disorder, generalized anxiety disorder, or posttraumatic stress disorder.

Care preferences were then assessed with the following question: “If you could chose, would you prefer (1) a course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort, or (2) on a plan of care that focused on relieving pain and discomfort as much as possible, even if that meant not living as long?” They were also asked, “Would you want the doctors here to do everything possible to keep you alive even if you were going to die in a few days anyway?” Finally, patients were assessed for whether they had completed a do-not-resuscitate order, living will, or a health care proxy/durable power of attorney. The primary outcome variable to be assessed was intensive life-prolonging care, defined as receipt of ventilation or resuscitation during the last week of life. Secondary outcomes assessed included hospice enrollment and death in an intensive care unit.

The results were described as follows:

A high level of positive religious coping at baseline was significantly associated with receipt of mechanical ventilation compared with patients with a low level (11.3% vs 3.6%; adjusted odds ratio [AOR], 2.81 [95% confidence interval {CI}, 1.03-7.69]; P = .04) and intensive life-prolonging care during the last week of life (13.6% vs 4.2%; AOR, 2.90 [95% CI, 1.14-7.35]; P = .03) after adjusting for age and race. In the model that further adjusted for other coping styles, terminal illness acknowledgment, support of spiritual needs, preference for heroics, and advance care planning (do-not-resuscitate order, living will, and health care proxy/durable power of attorney), positive religious coping remained a significant predictor of receiving intensive life-prolonging care near death (AOR, 2.90 [95% CI, 1.07-7.89]; P = .04).

Oddly enough, this is the opposite of what I would have expected. I would have expected that faith and “positive positive religious coping” would be more likely near the end of life to view the end as God’s will and therefore be less likely to insist on heroic measures. Alternatively, one might postulate that patients with a high degree of negative religious coping might be more likely to insist on heroic measures. It’s not hard to imagine the reason as being fear of hell or divine retribution. The authors explain the possible reason for this correlation thusly:

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.

This may make sense. After all, there are Orthodox Jewish sects that value life above all else, sometimes to the point of insisting on keeping the bodies of brain dead children alive. Another potential explanation is that many faiths teach that suffering brings one closer to God:

Orthodox Jewish patients often express the belief that life is worth living no matter how debilitated the patient, and Christians sometimes welcome the opportunity to express their faith by enduring pain, said Betty Ferrell, a registered nurse who researches end-of-life care issues at City of Hope in Duarte.

“We’ve had patients who said, ‘Well, God suffered. Jesus suffered. So if I suffer, it’s going to make me more like God,’ ” she said.

Ferrell recalled the case of a terminally ill cancer patient who baffled her caregivers by embracing the prospect of an agonizing ending.

“She said, ‘I want my sons to remember that I fought until the end,’ ” Ferrell said. The patient wanted “her children to see she would not abandon her faith, even when things got tough.”

Some healthcare providers are now reconsidering what it means to have a “good death.”

The problem with this “good death,” however, is that it is not just about the patient demanding the heroic treatment measures. It’s also about a massive waste of resources for zero hope of prolonging life and every chance of causing more pain to both them and their family. Patient autonomy is important, but medical ethics do not demand that we as physicians acquiesce to every request patients make. On a strictly ethical basis, we are not obligated to administer care that has no hope of prolonging life and every hope of prolonging suffering of both the patient and the family. But it’s more complicated than that, because it’s not always easy to differentiate when care is futile or to persuade the patient and family that care is futile. As always, communication is key; the problem is that the communication of the patient needs to be helped coming to terms with his prognosis as soon as it is determined that he is no longer curable. All too often, such patients are permitted to continue to labor under the delusion that there is still a chance that they can be cured. Worse, all too often this misconception is allowed to persist even past the point where it’s even possible to prolong life anymore.

While it’s highly tempting to take the lazy and simplistic path of simply using a study like this as yet another convenient excuse to bash religion, but as much as certain atheists triumphantly gloat over this study as evidence that either religious people, when it comes right down to their time to check out, don’t really believe in heaven, the explanation for the results of this study probably comes down to a combination of factors, including valuing life over quality or form of life (think: abortion controversy); a belief that miraculous healing is possible; and the aforementioned belief that suffering brings one closer to God. These can be overcome, but it requires patience and respecting the patient’s belief system even if the physician does not share it. (And, believe me, most physicians, even highly religious ones, would not choose heroic measures in such circumstances.)

Patients have all sorts of unscientific, faith-based beliefs, not just religious ones, that we have to deal with all the time. While it’s true that certain religious beliefs can interfere with patient care to an extreme degree and that religion is elevated in society far beyond other irrational belief systems such that it is respected far beyond what it deserves, physicians have to deal with the patient, irrational beliefs and all, and try to work with him or her to provide the best care possible, to prolong life, and, when it is no longer possible to prolong life, to palliate symptoms as much as possible. We do not have the luxury of treating a patient’s religious beliefs with contempt.

REFERENCES:

Andrea C. Phelps, MD, Paul K. Maciejewski, PhD, Matthew Nilsson, BS, Tracy A. Balboni, MD, Alexi A. Wright, MD, M. Elizabeth Paulk, MD, Elizabeth Trice, MD, PhD, Deborah Schrag, MD, MPH, John R. Peteet, MD, Susan D. Block, MD, & Holly G. Prigerson, PhD (2009). Religious Coping and Use of Intensive Life-Prolonging Care Near Death in Patients With Advanced Cancer JAMA, 301 (11), 1140-1147