Wednesday, March 18, 2009
Religious Coping and Aggressiveness of Medical Care at the End of Life
I'm expecting a lot of discussion about this study in the current issue of JAMA, "Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer." Religious coping is defined as "how a patient makes use of his or her religious beliefs to understand and adapt to stress." Previous studies have shown that people with high positive religious coping are more likely to have preferences for aggressive life-prolonging treatment and less likely to have advance directives. "Positive" religious coping employs reliance on faith to promote healthy adaptation. "Negative" religious coping tends to see illness as punishment and may indicate existential crisis. Positive and negative religious coping are not mutually exclusive, but negative coping is uncommon. This is the first study to look at actual outcomes in patients with high vs low religious coping.
The subjects in this study were enrolled in the Coping with Cancer Study, a multi-institutional, prospective, psychosocial study of patients with advanced cancer. The Coping study is funded by the National Cancer Institute and the National Institute of Mental Health. Data was collected in a 45-minute interview. Both English and Spanish-speaking subjects were enrolled. In addition to patients, caregivers completed separate questionnaires, although caregiver religiousity was not a focus of the current study. Caregivers were approached a few weeks after the patient's death for information about the death (post-mortem chart reviews were also done). The instrument used was the Brief RCOPE, a validated 14-item questionnaire that assesses religious coping. Seven positive and seven negative types of religious coping are included, answered with a 4-point Likert scale. 92% endorsed a least one positive coping scale item, while only 43% endorsed any negative item. Patients were designated as having either high or low religious coping depending on whether they scored above or below the median. In addition, the Structured Interview for DSM IV Axis I to identify patients with panic, anxiety, or posttraumatic stress disorders or depression. Finally patients were asked to characterize their health status and whether their religious/spiritual needs were being met by the medical system.
A total of 664 patients participated in the overall study. Data were available on 345 of the 385 patients who had died at the time of the analysis. Death came a median of 122 days after the patient interview. The primary findings were that "a high level of positive religious coping at baseline was significantly associated with receipt of mechanical ventilation compared to patients with a low level;" and with "intensive life prolonging care in the last week of life." Nonsignificant differences were found for CPR received, death in the ICU, and hospice enrollment. In addition, a high level of religious coping, compared to low, was associated with the following: use of negative religious coping, active coping, greater acknowledgement of terminal illness, greater support of spiritual needs, preference for heroic measures, less advance care planning in all forms.
The findings persist when adjustment for various psychosocial factors are included. "These results suggest that relying upon religion to cope with terminal cancer may contribute to receiving aggressive medical care near death." The authors characterize this as a possible negative outcome for religious copers "because aggressive end-of-life cancer care has been associated with poor quality of death and caregiver bereavement adjustment." This is a problematic statement for me. It seems to contradict a previous statement that these patients see themselves as "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." In addition, some patients see prolonging life as an essential acknowledgement of the sacredness of life. It seems to me that the task of spiritual care with this population is to support, to the extent possible, the patient's expressed beliefs and values while maintaining informed decision-making and consent. It is also important for patients who belong to an organized religion to receive adequate teaching and counsel in the teachings of that religion in order to clear up misunderstandings and misconceptions that may impact their decision making.
The authors recommend earlier spiritual assessment and support and inclusion of clergy/chaplains in the care team. A follow up research recommendation is to study the "mechanisms by which religious coping might influence end-of-life care preferences, decision making, and ultimate care outcomes."
Andrea C. Phelps, Paul K. Maciejewski, Matthew Nilsson, Tracy A. Balboni, Alexi A. Wright, M. Elizabeth Paulk, Elizabeth Trice, Deborah Schrag, John R. Peteet, Susan D. Block, & Holly G. Prigerson (2009). Religious Coping and Use of Intensive Life-Prolonging Care Near Death in Patients With Advanced Cancer JAMA, 341 (11), 1140-1147
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6 Responses to “Religious Coping and Aggressiveness of Medical Care at the End of Life”
March 18, 2009
What an interesting discussion. After the First International Symposium on Veterinary Hospice Care at UC Davis College of Veterinary Medicine in March 2008 interest in a national organization for Pet Hospice and Palliative Care grew. Dr. Amir Shanan and a core group of Veterinarians are now working to make the International Association of Animal Hospice and Palliative Care a reality. There is an ongoiny dialogue between those that advocate "natural death" vs. euthanasia for animal companions. It is fascinating to me to view this convergence in Human and Veterinary Medicine,especially now that many owners want the most agressive care available for the animal mbers of their family. We DVM's have long been "reluctant executioners". (I first heard this term from Dr. Alice Villalobos one of the most respected Veterinary Oncologists in who coined the phrase "pawspice") We each had to come to terms with our own morals as well as our ideas about death as we faced practice and our role in providing euthanasia as the ultimate treatment to relieve suffering in our patients. Veterinarians have to develop our own "best" way to euthanize our patient technically, develop decision making tools, memorialize the pet and offer avenues for grief expression. I had a "comfort" room but nothing was comfortable about the type of decisions I had to make daily. Would I "put to sleep" a pet with a treatable disease because the owners would or could not treat their pet? How did I help the owner, guiding them to a "right" choice, then turn around and present them with a monetary estimate of either continued care or euthanasia? How did I share in the grief day after day? Meanwhile, my ability to make the animal comfortable grew as Veterinarians borrowed protocals from Human Medicine. Eventually I began to offer Hospice and Palliative Care without knowing it. (We Veterinarians are stubborn, most of us choosing to reinvent the wheel as we go along.) Now, through this organization I hope we can spread better information to more Veterinarians. I had no idea that there were Veterinarians who have offered Hospice Care for decades. They were long considered cruel by many of us. Now we have to debate, like you have, what is a "natural" death. (Dr. Villalobos pointed out that a "natural" death was becoming prey. That really made me think.) Now we have a spectrum of Palliative Care tools from quality of life instruments to a Hospice Medicine training course. Hopefully the IAAPHC will be official soon and be a place where we will debate the very same issues facing Human Medicine practitioners. In the meantime we welcome your comments at www.IAAHPC.org/forum or @jmedvm on Twitter,or #petpallimed. (The Second International Symposium on Veterinary Hospice Care will be Sept. 5-7,2009 at UC Davis again sponsored by the Nikki Hospice Foundation for Pets and Assissi International Animal Institute, Inc.)
March 19, 2009
Tom - a few comments about your objections re: "...because aggressive end-of-life cancer care has been associated with poor quality of death and caregiver bereavement adjustment..." While that speculation is not particularly polite (insofar as questioning the benefits of religious beliefs is not something which is done in polite society) that statement in and of itself is correct, insofar as the CWC study itself found that aggressive EOL care was associated with worse outcomes (they reference their prior jama study with that statement), which leaves us with an association of religious coping with 'aggressive' eol care with worse bereavement outcomes. Given this, asking this question seems legitimate, and in fact it seems potentially answerable, at least within the confines/limits of their own data - I'm curious as to whether they've looked or plan on looking at that.
None of this proves causality, of course, but these are some of the best data looking at these questions. What I am trying to wrap my head around, as a clinician and non-researcher, is what the measure of religious coping is actually measuring - all these indices are just that, indices - of something - and this one is not religious belief (as most patients in the study as with most of the US were religious). From simple observation however I think most of us in palliative care can easily say that religious belief, religious coping, and connections with religious communities are not universally helpful for patients; for some - likely a relatively small minority - religion can aggravate suffering and make a bad situation (dying) worse.
My question with their discussion is about this statement:
"Failure to address the spiritual needs of patients with terminal cancer could conceivably contribute to spiritual crisis at the end of life, thereby leading to more aggressive care."
Perhaps. But one could also argue from the findings that these outcomes (dying in/shortly after ICU, receiving CPR prior to death) may very well have been completely consistent with the patients' wishes, consistent with how they want to 'go out' and not as such a consequence of spiritual crisis or lack of spiritual support, etc.
Either way, the number of patients who had these 'aggressive' measures were still small (10%ish) of all of them - this is a small minority of patients - but it's the group that I'm the most interested in as a clinician....
There was another recent publication from CWC that I plan on posting in the next couple weeks.
March 20, 2009
Drew,
Thanks for the opportunity to clarify. I guess the point I'm trying to make is that "good death" and "bad outcome" are in the eye (and other senses) of the individual. I think a better case can be made that bereavement is complicated by a "bad outcome" than that the dying person experiences a bad outcome. Depending on the belief system, aggressive unpleasant treatment may be required by dogma (because, perhaps, prolonging life honors the sanctity of life), may provide atonement, pay provide purification, and so forth. In that context the difficult death is the intended outcome.
What concerns me is whether the person's stated intention is based on his/her own deeply held values and beliefs, or are they held hostage by a religious or spiritual belief institution that imposes this difficult situation at the end. "Whose value/belief is it, anyway?" The role of spiritual care is to help the patient explore the value/belief, the spiritual relationship with God or _______ (fill in the blank) in the context of decisions to be made at or near the end of life.
March 20, 2009
I agree, and was more or less making a similar point at the end of my last comment. While we're backing & forthing...
"What concerns me is whether the person's stated intention is based on his/her own deeply held values and beliefs, or are they held hostage by a religious or spiritual belief institution that imposes this difficult situation at the end."
I agree with this too, and wonder about it in (a minority of) my patients. That said, the 'belief institution' that more frequently holds our patients hostages is the one of contemporary medicine with it's profound ability to act, to do things, and profound inability to pause and ask if it's the right thing to do.
Anyway - see you next week TQ.
March 20, 2009
Hi, the Veterinarian again, I did not realize that "Pallimed" was an original term for this blog. I will write our blog under a different name and not use "petpallimed" for a Twitter hashtag. Any creative suggestions appreciated but in the meantime please feel free to contact me @jmedvm. I am learning so much from this blog;the discussions very relevant and helpful for me. Thanks so much!
March 20, 2009
jmedvm: that's ok, neither does my mother, who calls my profession 'pallimed' or at times 'pallicare.' She also reads the blog sometimes so i may have just gotten myself in trouble.
we actually posted about the vet palliative care movement a while back, and yes the similarities are striking. What about pallipet, pallivet?
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