In July 1995 Sisters of Providence Health System (PHS), Seattle, convened an interdisciplinary team to design a study that would show the positive effect of spiritual care in health and healing. PHS, like other Catholic healthcare organizations, sees spirituality as an integral dimension of human life and as an essential factor in health and well-being. Eventually, five other Catholic healthcare systems and the Catholic Health Association joined in sponsoring the study.
In recent years, most healthcare providerswhether religious or secularhave paid increased attention to the role of spirituality in healing. Despite this trend, however, a survey of the literature reveals that the healing effects attributed by many patients and physicians to spirituality are not yet reflected in scientific journals.[1]
The PHS study therefore sought to document the influence of spirituality and spiritual experiences on the health and well-being of chronically ill individuals, many of whom were living with life-threatening illnesses. Spirituality is often defined as one's experience of meaning and purpose in lifea sense of connectedness with people and things in the world.[2] Two writers have argued that although all people have spiritual desires and a need to fulfill them, they feel this especially strongly when ill. Spirituality can bring an ill person three benefits: hope, strength, and emotional support. As a result of meaningful spiritual experiences, the person will often have a sense of peaceful satisfaction with lifesatisfaction even with the illness.[3]
It is important here to make a distinction between "healing" and "curing." Curing is physical, alleviating the signs and symptoms of disease at the anatomical level. Healing, in contrast, is spiritual, intangible, and experiential, involving an integration of body, mind, and spirit.[4] This integration gives the person a sense of peace. Cure is concerned with wholeness of body, healing with wholeness of being. The two can occur together or separately; it is entirely possible to be healed without being cured or to be cured without being healed.
Some studies have suggested a connection between spiritual well-being and physical cure.5 An ideal goal for healthcare, however, would be to ensure that all patients achieve some measure of healing, whether they are cured or not.
The PHS Study
Between November 1996 and December 1997, a team of researchers conducted interviews, each lasting from one to two hours, with 162 people suffering from serious chronic illnesses. The diseases involved were coronary artery disease, cancer, HIV, chronic obstructive pulmonary disease, and chronic mental illness. The respondents ranged in age from 25 to 96, with a mean age of 59 years. Some had very mild symptoms; others had suffered great physical decline and were near death.6 Although the study focused on spirituality, participation was not limited to those of religious backgrounds. In fact, efforts were made to include individuals with wide-ranging perceptions and levels of spirituality.
In each interview, the researcher asked the participant a set of questions. The data yielded by the responses were qualitative rather than quantitative, involving words rather than numbers. Qualitative datalong employed in history, anthropology, and political sciencehave in recent years been used by social scientists in such fields as psychology, sociology, healthcare, and program evaluation. Among their other advantages, qualitative data have a certain concrete "undeniability" that numbers lack.
The participants' responses were analyzed in two stages:
The researchers drew five principal lessons from their analysis of the interviews.
Discovering Life's Meaning
To discover what makes life worth living, a chronically ill person must engage in an active process. Some people are able to derive meaning from adverse experience in a way that promotes a sense of well-being or healing. Spiritual caregivers can aid this process by helping the ill person to identify, first, what he or she has lost as a function of chronic illness and, second, the new meaning he or she has gained in confronting the limitations imposed by illness or impending death.
Most of the study participants saw the process of examining meaning in one's life as a very active one, involving a dialogue between the ill person and God. Spiritual caregivers can serve as guides in helping patients uncover this meaning. Caregivers should validate whatever the ill person finds meaningful, never imposing their own beliefs or definitions of meaning on the patient. Knowing what patients value, what concerns them, and what constitutes meaning for them will provide caregivers with the key indicators needed to help patients toward a richer, more vibrant end-of-life experience.
The Role Played by Religious History
A person's religious upbringingwhether it was experienced as a comfort or as an obstructionwill strongly influence the way he or she copes with life-threatening illness. For some people, religion provides a spiritual path to acceptance. Others, whose religious upbringing has somehow prevented them from finding peace, must come to terms with it as they approach death.
Caregivers can help patients reach a point of acceptance and peace by respecting their spiritual and cultural diversity, helping them embrace what is life-giving about their religious heritage, and helping them achieve closure for that which was wounding and in need of healing in their lives. Because spiritual caregivers (who are often chaplains) tend to be perceived as religious figures, it is important for them to seek in each seriously ill patient an "entry point" enabling the caregiver to help the patient see death as a life process, not just a religious ritual.
Participation in Religious Activities
Seriously ill people often lose the ability to participate in formal religious activities. Physical limitations may keep them from attending communal religious services, for example. Profound pain may even prevent them from engaging in prayer.
This frequent fact of life challenges spiritual caregivers to consider which rituals are likely to be most healing for each seriously ill patient, rather than simply assuming that sacraments or other formal religious rituals will fill every need. It is essential that the caregiver ask the patient what would bring him or her comfort. When the patient is in severe pain, the most appropriate healing is one in which the chaplain simply sits quietly, praying with or for the patient, and reassuring him or her with an occasional touch.
The Value of Storytelling
People with chronic illnesses need to tell their story in their own way and in their own time. Storytelling serves several functions:
Spiritual care providers, as well as the entire team of caregivers, can best facilitate the healing process by simply letting the patient tell his or her story, at the same time listening for and affirming the threads of meaning in the experience revealed there.
The Gift of Relationships
Relationships are the key to providing care and healing for people with chronic or life-threatening illnesses. Healthcare providers can best establish a relationship with a patient by paying close attention to what he or she has to say. A spiritual caregiver can act as a spiritual resource for the entire healthcare team, training its members to:
Spirituality can permeate every aspect of illness and healing for a person living with a chronic illness. Because spirituality is all encompassing, it is incumbent on all healthcare providersnot just chaplainsto pay attention to mind-body connections, listening closely to what patients say.
Although not everyone can master "healing touch" therapy, or even believe in it, there is strong evidence that touch can be healing.7 It is imperative that healthcare professionals be unafraid to touch patients in a compassionate, sensitive manner.
Clearly, the chaplain's role may need to be expanded beyond that of direct caregiving. Chaplains can play a significant part in training other healthcare staff and volunteers how to listen and interact with patients. As lengths of hospital stay grow shorter, much of the responsibility for care shifts from the staff to the family; chaplains can also help family caregivers deal with this new and very difficult role, as well as connect the family with needed support services.
This role of care coordination and caregiver training represents a different direction for spiritual care, one that serves a critical need for many patients and their families. Moreover, a chaplain playing an integral role in the life of a terminally ill individual would undoubtedly facilitate that individual's journey toward healing and acceptance.
We must always remember that spiritual care is intended not just for people who believe a certain way or who define God according to a particular doctrine. Spiritual care is for everyone, and each of us expresses his or her own spirituality in a unique way.
The authors would like to thank Tina Picchi, Jerry Broccolo, and Beth Morris for their contributions to this article.Cosponsors of the Spirituality ProjectDr. Skokan is senior research scientist, Center for Outcomes Research and Education, Providence Health system, Portland, OR; Sr. Bader is senior vice president, mission, Catholic Health Initiatives, Denver.
The Providence Health System study was cosponsored by:
Social scientists have long been aware of the problems involved in researching phenomena that are essentially spiritual or religious. In Scientific Research on Spirituality and Health (National Institutes of Healthcare Research, Rockville, MD, 1998), D. Larson, J. Swyers, and M. McCullough identified four factors that impede clinical research into religion and spirituality:
There are also problems with qualitative data. On the positive side, they are a source of well-grounded, rich descriptions and explanation of processes in certain contexts. With qualitative data it is possible to preserve the chronological flow of events, so that it remains clear which events led to which consequences. It is also possible to get beyond initial conceptions and generate new conceptual frameworks or revise old ones. And, finally, stories have a concrete, vivid quality that usually proves more persuasive than pages of summarized numbers.
On the negative side, the reliability and validity of our conclusions, although the result of a labor-intensive process, may be questioned by some readers. A researcher uses certain well-established conventions in working with quantitative data. In qualitative analysis, however, the researcher employs a bank of data (in this study, 162 transcribed interviews) accompanied by only a few guidelines to shield it from the researcher's bias. To overcome this shortcoming, we asked two people unconnected to the study to code these data; we asked a third person to help clarify codes that were in question.
The PHS study findings might have been "purer" if the interviewers had not been spiritual caregivers. Although the interviews may have been healing experiences for some participants, they sometimes took on the flavor of spiritual care interventions, drawing both interviewer and participant away from a meaningful discussion of the research objectives.
Finally, given the nature of the sample, some may question the usefulness of trying to generalize from the findings. All participants received their care from Catholic healthcare systems. This gave us a population that was fairly comfortable with discussing spirituality, but it also may have precluded the diversity of spirituality we were looking for. Despite these caveats, because of the consistent themes throughout the transcripts, we are confident that these data accurately represent the views of most people who face chronic and life-threatening illness.
"What Gives Your Life Meaning?"
In trying to discern what the term "spiritual" meant to participants, interviewers asked them the following questions:
Five major themes seemed to emerge during the interviews.
Supportive Relationships
Connections with family, friends, community, and God give life meaning. "I think God put us here, all of us here, for a purpose, and one of those purposes is to help each other," said a participant. Another talked about helping a neighbor: "I never thought I would be in a position like that, to truly help someone. It is a wonderful feeling."
Religion
Religious faith (including prayer and rituals) and a relationship with God were significant for a majority of respondents. "I think [my relationship with God] is all that I need," one person said, "but I want it strengthened. I pray for that. I just want to know and love him more." Some saw their illnesses as a gift that had brought opportunity for spiritual growth.
Maintaining Hope
Study participants placed great importance on exhibiting grace and faith in their daily lives. "Being quiet helps my healing," said one participant. "By enjoying a beautiful day like today . . . your problems become less prominent," said another. "There's beauty in life, there's other things you can focus on."
Engagement
Involvement in community and professional activities bolstered self-worth and a sense of being normal. One person had been working for an AIDS charity. "I had just started two months before I found out I was infected. It was kind of strange to have that role reversal. But then I realized I can still do volunteer work, so that's what I'm doing."
Personal Action
Respondents often said that a positive attitude and behavior were the most important keys to healing. They believe patients should be active participants in their own healing. "The main thing is what you think," one said. "And exercise. And you have to eat properly; you have to take care of your body. You have to have the right mental attitude."
January-February 2000 issue of Health Progress.
Copyright 2000 by the Catholic Health Association of the United States, reprinted with permission. For reprint permission, call Carrie Stetz, 314-253-3454.