February 2002

HRSA Care ACTION

Spirituality and Treatment of People Living With HIV Disease

As if the physical challenges of HIV/AIDS were not hard enough, infection with the virus also raises the difficult spiritual questions that confront most people with life-threatening illnesses: What is life about? Why is there pain and suffering? What happens when life ends? Because HIV/AIDS has been so highly stigmatized as a result of its associations with sexuality, drug use, and death, many people living with HIV/AIDS also grapple with other painful questions: Did I bring this on myself? Do I "deserve" to be cut off by my church because of it? Does God love me?

The way people living with HIV disease answer spiritual questions has profound implications for both their physical health and their health care providers. A growing body of research shows strong connections between the way people define the "meaning" of their illness and the strength of their immune systems and their ability to cope with illness and loss—and even the likelihood that they will adhere to medical treatment as prescribed. Evidence increasingly suggests that the attitude of medical caregivers toward their patients’ spirituality has serious ramifications for the level of trust and cooperation between patient and provider—and even for the efficacy of medical care itself.

"Whether you know it or not, patients have belief systems, and they may not be stated," says Pat Fosarelli, M.D., D.Min. Dr. Fosarelli is a pediatrician at Johns Hopkins University Medical School and professor of spirituality and practical theology at the Ecumenical Institute of St. Mary’s Seminary and University in Baltimore. She adds, "These belief systems have implications for the care you’re giving, so it’s good to find out about them." For some people—particularly those with HIV/AIDS—Fosarelli says that "the belief systems may have something to do with God and punishment and why they are in the position they are in."

The stigma associated with HIV/AIDS has led many people living with the disease to believe that it is a kind of divine punishment for their behavior by "a very angry God who is just waiting until you mess up and will punish you," as Fosarelli puts it. She points out that even young children with an HIV diagnosis may think they are being punished for something they have done.  Such beliefs can have devastating consequences.  "I’ve had people not want to take their medicines because [they think that] if HIV is God’s punishment for the life they live, who are they to frustrate God’s plan," says Fosarelli.

Historically, Western medicine has tended to use a biomedical model of care that defines disease as a biological phenomenon. But patients increasingly want care to focus on more than their bodies—and certainly on more than a disease or constellation of symptoms. The medical system was not prepared to meet the needs of people living with HIV/AIDS, a disease that carries considerable emotional and moral "baggage." Change has been brought about by people living with HIV/AIDS, working in concert with care providers, to build a system of care that encompasses physical, emotional, economic, relational and, indeed, spiritual elements.

Christina Puchalski, M.D., director of the George Washington University Institute for Spirituality and Health in Washington, DC, observes that patients have become increasingly disillusioned with traditional clinical care over the past 20 years. "The biomedical model addresses biological aspects of disease, but it doesn’t focus on the whole person," she explains. "Patients got discouraged with that because they wanted their doctor to be compassionate and understanding about their suffering." An internist and geriatrician, Puchalski is a leading advocate of a "biopsychosocial" approach to medical care, in which the spiritual orientation of both patient and provider matters. She defines spirituality simply as "that which gives meaning to a person’s life." It can be a belief in God, relationships, nature, or anything else that helps people understand their lives.

Puchalski says that to provide true whole-person care—or integrative medicine, as it is increasingly called — physicians must include a "spiritual history" as part of their intake and evaluation of their patients. Puchalski has outlined four areas of questioning that can provide an effective spiritual inventory. The categories are easily remembered by the acronym FICA (see box).

"The FICA assessment is a good start," says Puchalski.  "Think of it as just getting to know your patient." In her experience, she says, "When asking about hobbies, jobs, and significant relationships, I just ask if spirituality is important to them, what helps them cope with stress. I ask whether there are any particular rituals or beliefs that I need to know about in their health care—restrictions in diet, for example." In her effort to gauge the patient’s strengths and supports, Puchalski says that she also finds it natural to address issues related to advance directives, such as living wills and powers of attorney.

With clinicians’ schedules already packed, Puchalski anticipates the objection that they do not have enough time in a typical patient visit to add "yet one more thing" to the must-do list. However, she suspects that time constraints alone are not holding them back. "When someone says they don’t have time for a sexual or spiritual history, it may be because they are uncomfortable or feel it’s personal and intrusive," says Puchalski. How else, she asks, to account for the surveys showing patients’ willingness to discuss issues like their sexual behavior or spirituality—but only if their doctor brings them up—and the finding that a majority of patients have not discussed such matters with their doctors?

If doctors are worried that the spiritual history may yield issues that are beyond their comfort level or expertise, Puchalski says that a referral to a religious or spiritual "expert"—such as a chaplain—should be as natural as a referral to a medical specialist. "We are not trained to be spiritual providers," she says, "but these spiritual issues may manifest for the first time in the context of a [patient] visit, and we can refer to our colleagues who are." She suggests that these professionals should be seen as partners in the patient’s care team.

Harold G. Koenig, associate professor of psychiatry and medicine at Duke University Medical Center and founder of the Duke Center for the Study of Religion, Spirituality and Health, says of HIV/AIDS, "This is a pretty nasty illness. It threatens people’s lives, their way of life, their relationships. It brings up a lot of spiritual issues." Given that backdrop, Koenig says, "Physicians need to address these issues to practice whole-person’ medicine."

Koenig has conducted highly publicized studies suggesting that churchgoing people are less prone to disease, have healthier immune systems, and live longer than those who don’t attend religious services regularly. He cites a large, forthcoming study from the University of Miami that looks at the role of spirituality and prayer in the lives and health of people who have been infected with HIV for a long time.   "It really does make a difference," says Koenig. "It is clearly connected with CD4 counts."

Koenig and his colleagues found similar correlations between participation in religious activity and lower blood pressure among older adults. Their study of 3,963 people age 65 and older found that those who participated in religious activities—other than watching religious TV or radio, which had the opposite effect—had lower blood pressure than those who did not.¹  Koenig also has found that religious involvement appears to enable those dealing with serious and disabling medical illness to cope better and to experience psychological growth from their challenging health experiences, rather than to be defeated by them.² 

The implications are potentially tremendous for people living with HIV disease. "It makes common sense," Koenig says. "We’re not talking about something weird here. If people feel at peace spiritually, feel a connection with God, if they’re not going to be struggling as much psychologically, they will be more optimistic, and have a sense of connection."

For Fosarelli, who has doctorates in both medicine and ministry, making connections between the spiritual and medical was a natural evolution in her career. "Children were always asking me hard questions," she says. " Does God want me to be sick?’ I pray to God, why doesn’t God let me be well?’ Why did God let my daddy die?’" Despite a Catholic education through the high school level, Fosarelli said she did not know how to handle such spiritual issues in her medical work. Thinking to herself, "Maybe I could be a better doctor if I could address what was bothering people," she pursued the second doctorate and, as she puts it, "looked at the spiritual development of people [throughout the course of] disease." '

The kind of shift in perspective that Fosarelli experienced is happening throughout Western medicine. In March 2001 the National Institutes of Health hosted its first major conference on mind-body research (the conference report is available at http://www.mindbody.org/events/vital_connections.pdf). Advances in brain imaging technology and in tracking the molecular activity of disease lend credence to the idea that the patient’s mind can affect outcomes in the body.

This new understanding of the role of the physician is increasingly becoming the standard in medical education. Puchalski says that about 80 American medical schools offer coursework on the biopsychosocial approach to medicine that gives attention to spiritual issues.  

In 1999 a report from the Medical School Objectives Project of the Association of American Medical Colleges noted, "We are coming to understand health not as the absence of disease, but rather as the process by which individuals maintain their sense of coherence (i.e. sense that life is comprehensible, manageable and meaningful) and ability to function in the face of changes in themselves and their relationship with the environment."³ The project’s committee on spirituality, cultural issues, and end-of-life care, which Puchalski chairs, recommended that medical students cultivate "an understanding that the spiritual dimension of people’s lives is an avenue for compassionate care giving." They also should be familiar with research data on the impact of spirituality on health and health care outcomes. In addition, students should have "an understanding of, and respect for, the role of clergy and other spiritual leaders" as well as "how to communicate and/or collaborate with them on behalf of patients’ physical and/or spiritual needs."⁴