Researching the human spirit"Most providers want to help patients in a compassionate and patient-centered way. Addressing the spiritual issues in care is vital for both the providers and the patients."By
First published June 2003
In a health care research community dominated by biomedicine, the phrase "spirituality and health" still raises eyebrows, if not exactly hackles. And while the public may always have assumed that there were commonsense links between spirituality and health, acceptance of that possibility -- by the country's top-ranked UCSF School of Nursing no less -- suggests that something has changed. Indeed, medical journals are now publishing studies on the topic. Other professional schools are offering courses. The mainstream press is also publishing breathless cover stories. Still, theconcept, which seems to defy the quantifiable creed that defines modern science, is far from a guaranteed crowd pleaser. So in establishing a chair in Ethical and Spiritual Dimensions of Nursing Practice -- thanks to a gift from a retired public health nurse named Thelma Shobe Cook -- the School of Nursing has rolled the academic dice. In short, it is gambling that a concept that remains on the margins of health care can be explored and incorporated into nursing care and, by extension, into all medical care. The Limitations of the Clinical GazePlaying the hand is one of the School's aces, Patricia Benner. Benner has spent much of her career examining how the "detached gaze" of clinical science has separated medical care from its early spiritual and service-oriented roots. That detachment, says Benner, has enabled enormous advances in curing disease. Yet in today's health care environment -- where practitioners spend much of their time helping people cope with incurable or chronic illness -- the detached gaze is running up against its natural limitations. "Science has its own force, and that's good," says Benner. "But it's up to ethical and spiritual traditions to guide our choices and imagination about what science and technology can do." She argues that in order to help people with chronic illness lead lives that involve less physical and emotional pain, clinicians must develop a compassionate understanding of each patient's world outside the clinical setting. They cannot form that picture through a gaze that only sees physical symptoms and technical solutions. To illustrate her point, Benner relates a story told to her by a Scottish colleague, John Atkinson. In 1990, Atkinson was called to Romania to help discover patterns of practice that would help Romanian clinicians treat a group of HIV-afflicted children. Though the children were receiving the proper HIV medications and most were not terminally ill, many were dying from malnutrition and dehydration. (Atkinson published the story in the October 1993 edition of the Radix Journal.) Many of the children had become orphans because their parents could not find them in an embattled Romania. Atkinson found that many of the charts were not accurate and did not even include details like the children's name or birthday. The clinical staff did not use the children's names. Over the next few months Atkinson and his colleagues set up a nursing project whose goal was to recognize the children as individuals, and to encourage their nutrition, hydration, developmental milestones, play, and other activities. The use of each child's name was crucial; caretakers placed the name, date of birth, and age (or assumed age, based on an assessment, when the birth date was not known) above each child's bed. Improvements in both morbidity and mortality followed. The children became more animated. And the positive effect on the morale of the staff was profound. A Recognition PracticeBenner calls Atkinson's simple act of naming a "recognition practice." Nurses in this country have long talked of the need to incorporate such practices into clinical care. They ask: how can we send heart patients or diabetics home with clinical regimens to follow if we don't understand the world in which they live -- their caregivers, living conditions, daily schedules? Without that understanding, aren't the clinical solutions doomed to failure? These are important concerns, of course, that have clear clinical, even ethical links, but are they spiritual as well? Benner believes they are. "The recognition practices of those nurses [in Romania] -- all recognition practices -- are spiritual in that we require a response from others to our existence in the world," says Benner. "No one is untouched by spirituality." That may be so, but Benner confesses that in spite of the increased attention to the concept, "We have as much problem as we've ever had in linking the life-social world with biomedicine. How we put them back together is the most pressing problem we have, given our aging population and the prevalence of chronic illness." Part of the challenge is that it is difficult to arrive at some universal definition on which everyone can agree. A blood glucose level is a blood glucose level, hypertension can be quantified, but what, exactly, does spirituality mean in terms of health? Without this understanding, how can the research community explore the implications? How can clinicians use the idea in their practice? Institutions and individuals interpret or respond to the concept of spirituality and health differently. The Duke University School of Nursing offers a Health and Nursing Ministries program that prepares students to "serve as national and international leaders in the development of congregational and community-based health care programs," rooted in formal, multicultural religious traditions. At the University of Minnesota School of Nursing, a Center for Spirituality and Healing calls itself "a nationally recognized leader in integrative medicine, bringing together biomedical, complementary, cross-cultural and spiritual care." Benner, however, is leery of too narrowly defining the term. While she believes that both formal religious practices and integrative medicine play important and growing roles in delivering and promoting more spiritual care, she sees spirituality, simply, as the broad, human search for meaning in life. "What matters to us most," she says, "what we are concerned about, sustains our everyday ways of being in the world and our relationship with others; as such it is connected to meanings and spirituality. For some this self- understanding and sense of meaning is lodged in religious traditions; for others it can be lodged in the sense of freedom and mastery associated with science and problem-solving, or other spiritual practices." Skepticism and Spiritual MooringsAn agreed-upon definition would help, but Benner and others must still convince an often skeptical research commuity that there is reason to look carefully at the value of a spiritual approach. In a famous 1999 article in the British medical journal Lancet, three Columbia University researchers skewered studies claiming to show a connection between spirituality and health. In part, these researchers spoke of the failure of these studies to deliver statistically significant results. While the article appeared four long years ago, the attitudes toward many of the studies in this area have hardly disappeared. Benner understands that to convince researchers of the validity of her work she may, at times, have to quantifiably measure the effect of spiritual practices on physical health outcomes. Yet she is resistant to -- even defiant about -- always defending the notion on scientific grounds. "Quantifying scientific outcomes is only one way of legitimizing this work," she says. "If we focus only on how this affects a patient's physical recovery, it becomes a technique and runs the risk of losing all its spiritual moorings." Benner believes that in many cases, qualitative work, particularly narrative, can be equally powerful in conveying that spirituality is quite often the condition necessary for any of our therapies to work at all. One area Benner would like to explore more deeply is the role of spirituality in health promotion and illness prevention. "Health care providers are blind to the fact that about 80 percent of care occurs outside of medical institutions and is delivered by intentional or biological families or communities. If we understand basic care in this way, we can dedicate more societal resources to the issue," she says. In part, this means taking a closer look at the skills and meaning of "giving care." One of the things Benner would like to do is reexamine how caregiving works within families, schools, churches, and communities so that the clinician's understanding of care can be enlarged. At the same time, Benner does not want to ignore clinical settings. She notes that end-of-life care is a natural place to study spirituality, since it comes at a point where cure is no longer possible. She has already embarked on a study of end-of-life care in critical care units. She also believes that it is important to look at the effect of "humanizing" institutional settings. "Most of our clinical settings are so far removed from ordinary visions of comfort," she says. "I recently visited Finland, where none of the facilities looked like institutions; they were much closer to domestic settings." Some Clear AdvancesAs noted above, Benner and UCSF are not alone in this cause. Dr. Christina Puchalski runs the George Washington Institute for Spirituality and Health (GWISH), which develops curricula on this topic for medical schools and health care professionals and tracks medical school coursework in this area. Puchalski says that in 1992, when she began her efforts, there were only three medical schools that offered a course in spirituality and health; all three courses were electives, including one she'd developed herself. By 2000, 72 of the 125 US medical schools had courses on spirituality or had integrated the topic into core pieces of the medical school curriculum. Puchalski believes that number is even higher today, though she is still completing her latest research in this area. Figures on nursing schools are more difficult to find, but Puchalski, who does presentations around the country, is convinced that there has been at least an equivalent degree of interest at the nursing schools she has visited. But convincing researchers and educators is only a first step. The proponents of spiritual healing still must convince clinicians of the need to incorporate the concepts into their everyday practice. In this area, Benner is somewhat more sanguine. "On a personal level, there is more acceptance than on an institutional level," she says. Puchalski of GWISH agrees. "When we do retreats for health care providers, we find people very responsive, because they want to get in touch with why they got involved in health care in the first place, and how they can continue to find meaning in an increasingly stressful environment. Most providers want to help patients in a compassionate and patient-centered way. Addressing the spiritual issues in care is vital for both the providers and the patients." The question remains, however, exactly how this fits into clinical practice. Even those clinicians who acknowledge the importance of the spiritual may struggle with why it is their job to attend to it, as opposed to more traditional spiritual guides. "Nurses and physicians appropriately refer patients to their spiritual guides, or religious persons," Benner responds. "But nurses especially are present with patients in some very difficult times. Recovery includes recovering one's world, re-entering and re-integrating oneself in a world that may be altered by illness, trauma, or even birth. It is important that nurses be able to recognize and acknowledge the patient's concerns and spiritual resources," she says. "Spiritual practices are intertwined with our caring practices from the mother's lullaby to accompanying the person who is dying," Benner continues. "It is important to constantly bring into focus what's left out when you don't include a person's life world, to expose the huge blind spot that makes recovery possible." |
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