International Center for the Integration of Health and Spirituality 2003 Conference ...Presentation on "Spirituality and Cancer"

I would like to review with you stress and its relationship to the experience of having cancer, particularly the existential issues: Is it true that there are no atheists in fox holes; spirituality; and the quality of life; interventions involving spiritual and religious practices; the relationship between spirituality and medical outcome; mediating mechanisms; and, some concluding points.

We heard from Secretary Allen at the beginning about the sense of threat and stress that has come to all of us through terrorist attacks and now, unfortunately, through war. On September 12, one of my breast cancer patients said, welcome to my world, now you know what it feels like. She pointed out that her body felt attacked in the same way that we felt attacked on 9/11. She actually made this dressmaker's maquette of what had happened to her body as a result of the diagnosis and treatment of breast cancer, the modified radical mastectomy and TRAM flap reconstruction, radiation burns, and so on.

So, cancer patients live with a daily reminder of the stress and threat that comes with a disease. It might be informative to look beyond just a cancer patient population to what people did after 9/11 to see what people resort to when they face this kind of existential threat.

A survey published in the "New England Journal" a few months after 9/11 based on a telephone survey showed that 98 percent of people talked with somebody else, 90 percent turned to religion, 60 percent to group activities. Now, this is a natural response to an overwhelming threat, and it is something that happens in particular to cancer patients.

I love this picture. I don't know if these two women actually knew each other, but they are conveying how the sense of comfort and closeness can be an important moderating influence on the threat and fear that people feel at times of stress and attack. In fact, cancer is a variety of stressors involving existential issues, pain, constant reminders of the threat of the disease, changes in family roles and physical abilities, social environment, and undergoing arduous treatments.

So it is a series of stressors. Dr. McEwen's work was mentioned earlier. We are learning in the study of stress that it isn't just the major hits that affect the body but also the constant minor stressors that can have long-term effects.

In the course of cancer treatment, there are a series of stages and types of problems that go along with the experience of cancer. The initial diagnosis is an existential crisis. Although half of all patients diagnosed with cancer will go on to die of something else — in other words, will be cured of their cancer — for every one it is an existential crisis. They are all afraid it is going to kill them.

At the end of acute treatment is a period of enhanced vulnerability, a time in fact when group support and when religious and spiritual support can be especially helpful because patients are disengaging from active treatment. Relapse is a recognition of a likely truncated future.

Existential concerns return and, of course, they are major issues in the course of terminal disease. We are finding that patients experience cancer in the same way they experience other traumatic stressors: assaults; automobile accidents; and so on. The rates of post-traumatic stress disorder among metastatic breast cancer patients here are at the same levels — about a third of patients with metastatic breast cancer — that you see in rape victims or auto accident victims.

Some of the things that can lead to demoralization in cancer patients can include hopelessness, a loss of meaning in life, and sometimes a desire for death, according to David Kissane from the University of Melbourne, and there can be a sense of despair that is by no means typical of cancer patients but certainly can occur.

The kinds of existential and spiritual concerns that face cancer patients Feher and Malley have described as involving emotional support, social support, and meaning, things that clearly are salient to the domain of spirituality and religion. Irv Yalom has written about the fundamental existential concerns of death, freedom, meaning, and isolation. Those terms occur over and over in the literature on spirituality and cancer.

Susan Block in a recent review in "JAMA" pointed out that finding a sense of meaning or transcendence ameliorates the experience of suffering. As Victor Frankl put it, one can endure almost any "what" if one has a "why."

A definition of spirituality that I find useful is that which allows a person to experience transcendent meaning in life, to put one's perspective of suffering into some broader context. There have been a number of excellent measures of spirituality that have been developed and used with cancer patients. I will mention a few of them, "The FACIT" by David Cella and his group, focusing on an issue of meaning and peace as well as faith as a separate dimension. There is the "Spiritual Beliefs Inventory" from Jimmy Holland's group involving emotional, cognitive, behavioral, and social dimensions. Pargament's brief "R-Cope," focusing on religious coping practices. There is a really fine review of the recent measures in psycho-oncology here by Mytko and Knight.

One of the major findings of the literature on spirituality and cancer has been that, by and large, dimensions of spirituality are positively correlated with quality of life, as one might expect. There are a number of relationships with less depression, with less death distress, mediating adjustment, with less anxiety. Family support and social activity is related to higher spirituality in some studies. Married patients tend to have higher spiritual well-being.

In an interesting recent study, Tomich and Helgeson found that meaning, but not faith, predicted less distress over a five-year interval. This was an unusual study in being of prospective design. However, there are also occasional studies that do not show a relationship between spirituality and well-being, although I would say the overwhelming majority of studies do make that connection.

Here is one good example. Brady's study on psycho-oncology found in linking overall adjustment of cancer patients that meaning and a sense of peace as well as faith and spirituality were related to a sense of contentment with cancer patients' quality of life and with their total adjustment scores. In particular, meaning actually ranked first in a regression analysis looking at quality of life, faith fourth. So, meaning ahead of physical well-being as being associated with a good quality of life. They concluded that spiritual well-being has a 0.5 effect size, which is a moderate effect size, on contentment with quality of life independent of pain, fatigue, physical, emotional, and social well-being.

So, I think the literature is quite clear that spiritual belief, a sense of meaning, is strongly associated with better quality of life. It is important to note that in certain cultures it may be even more important. In a survey by Ashing-Giwa of spirituality among African American women with breast cancer, 86 percent considered spirituality important in coping. A quarter believed that it was the will of God when people get sick. Eighty percent report spirituality and religion is important in their lives, and 40 percent said much of their social activity revolved around their religious faith.

However, spirituality can at times be problematic, and it is worth keeping that in mind as well. This is a very interesting recent study done by Karen Lerman's group showing that women who were rated high in spirituality but low in perceived risk were less likely to get genetic testing for breast and ovarian cancer. Now, this was not the case for people with high perceived risk, but it is possible that people with lower risk may use spirituality as an alternative to obtaining necessary medical treatment and diagnostic testing.

Taylor wrote an interesting article on conflict over prayer, noting that patients sometimes run into difficulties trying to use prayer in the context of their medical situation. There is the Book-of-Job problem that they mention: Why do good things happen to bad people? Or, as Archibald McLeish wrote in the play "J.B.," "If God is God, he is not good; if God is good, he is not God."

How do people put into perspective bad things happening to them? Sometimes they do so with self-blame. They find some reason to blame themselves, as they do with some pop psychological explanations for cancer, that somehow you got cancer because you had some psychological need for it, which is anything but the case.

People get into conflict over the desire to use prayer to control the disease and sometimes feel like failures if their prayer does not succeed in controlling the disease or bargaining doesn't work. So, I think we need to keep in mind that an intervention that can provide comfort also has the potential to provide problems.

What do we do with it in medicine? We have our own problems. I'm sorry, your insurance plan only provides for an empathetic nod and a saddened downward glance. There's a $200 copay for any additional words of compassion, not to exceed 40 words or three expressions of sympathy or condolence.

The American Society for Clinical Oncology has provided guidelines. Increasingly, those who care for the dying find that spiritual and existential issues are central to the quality of patients' lives as they near death. I think that recognition is very important in getting us to think about what we can provide in medicine. Religion may actually increase the use of support groups, for example, for men with prostate cancer. Spiritual healing is a choice of 10 percent of Norwegian cancer patients and almost 20 percent of those U.S. cancer patients who employ non-traditional therapy.

A variety of spiritual interventions have been developed. Cole and Pargament had one model with topics including control, identity, relationships, and meaning. Bill Breitbart, at Memorial, has developed a meaning-centered group psychotherapy. So this issue of meaning is very important.

We have developed a supportive-expressive model of group psychotherapy, and I will mention a couple of the themes in which we try to help people come to terms particularly with their fear of dying and death. By talking about it directly, we try to help people separate the process of dying from the issue of death itself, focus on a series of problems that they can do something about, and if I am convinced of one thing in 20 years of running these groups, it is that facing death together can be reassuring rather than frightening to people.

One patient wrote about one who had died, "Dear Eva, Whenever the wind is from the sea, salty and strong, you are here. Remembering your zest for hilltops and the sturdy surf of your laughter gentles my grief at your going and tempers the thought of my own."

Another patient talking about facing death in the group said that "Facing death is something like looking into the Grand Canyon when you are afraid of heights. Gradually you learn to do it. You can see that falling down would be a disaster. Nonetheless, you feel better about yourself because you are able to look at it. I can't say I feel serene, but I can look at it."

Facing these issues clinically also helps people reorder their priorities in life, trivialize the trivial and do what is important in life, although not every patient gets it. He is saying, "I am sorry, Mr. Rainey. Our tests show you have two weeks to live." He says, "Can I take them in August?"

Comforting families is important, and it is a much-neglected area in psychosocial research with cancer. As Shakespeare put it, "Give sorrow words; the grief that does not speak whispers the o'er fraught heart and bids it break."

Finally, I want to talk about the idea that spiritual interventions may help in some way. Spirituality may help with cancer survival via effects on the endocrine or immune system and other aspects of human physiology.

There have been two major reviews of this. Koenig in 2001 concluded that two or three studies found lower risk of cervical cancer, which certainly could be related to sexual behavior. Five of seven studies showed a lower risk of dying, although the major finding was that certain religious groups — Mormons and Seventh Day Adventists — live longer, probably because of health behaviors.

The January issue of "American Psychologist" has a number of superb articles on spirituality and health. Thoresen and his group conclude that none of the six studies they reviewed link the religious practice of spirituality to disease progression. None of two epidemiological studies show religious practice associated with cancer death. So, I would say at this point it doesn't look as though there is much evidence that spiritual practice per se reduces the incidence or progression of cancer.

Our group has recently found, in collaboration with Sandy Sephton, Cheryl Coopman, and Carl Thoresen, that breast cancer patients' ratings of the importance of spirituality were associated with a number of measures of immune function, including white blood cell count, lymphocyte count, CT-4 and CT-8 cytotoxic cells, and not with natural killer cells. So there is some evidence that religious factors may in fact be related to immune function.

There is also growing evidence that abnormalities of the stress response system, particularly the hypothalamic pituitary adrenal axis, may also be related to disease progression. I will very quickly show you some evidence that disrupted circadian rhythms — that is, the tendency for cortisol, the stress hormone, to be high in the morning and low in the evening — is actually associated here.

These are normal and abnormal endocrine patterns. The blue line is the normal one, high court in the morning. Waking up is a daily stress task, as we all learned this morning, versus more flattened cortisol curves is actually associated with shorter survival in breast cancer patients. So the ones who had the abnormal curves died significantly sooner than control patients who had more normal patterns.

One of the factors that is related to this is loss of marital support. So patients who were widowed, divorced, or separated were more likely to have these abnormal cortisol patterns. The women who never made the mistake of getting married in the first place had quite normal patterns, however.

So I think that what this literature suggests is that while it is possible that spiritual and psychosocial interventions have an effect on disease progression, it is by no means certain. Shakespeare said:

"When we our betters see bearing our woes,
We scarcely think miseries our foes.
The mind much sufferance doth o'erskip,
When grief hath mates and bearing fellowship."

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