BY: LAURIE SKOKAN, PhD, and SR. DIANA BADER, OP, PhD
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 providers — religious or secular — have 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 life — a 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 life — satisfaction 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 data — long employed in history, anthropology, and political science — have 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 (see Box).
The participants' responses were analyzed in two stages:
- Analysis of responses to selected questions. This revealed individual participants' views concerning the meaning of life; the existence of a "higher power"; the relationship, if any, between spirituality and health; and their personal hopes for improved health (see Box).
- Analysis of emergent themes. This revealed common themes emerging in the interviews, regardless of the particular questions asked (see Box).
Key Lessons from the Study
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 upbringing — whether it was experienced as a comfort or as an obstruction — will 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:
- It gives the patient a mechanism for organizing and shaping personal experience and thought, enabling him or her to reflect on and make sense of life.
- It allows the patient to share personal experiences with another person, thereby facilitating a sense of connectedness and intimacy.
- It often helps the patient feel that he or she is contributing to something bigger than himself or herself, which in turn helps him or her to understand the relationship between spirituality and healing.
Study participants who had done this kind of storytelling often said that even though they were in physical pain, they were not suffering. When a patient tells his or her personal story through the interview process, the suffering seems to be significantly alleviated because the patient finds meaning in his or her life, feels connected, and is at peace.
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:
- Ask the patient open-ended, sincerely interested questions about his or her experiences
- Listen carefully to the patient's replies
- Express compassion and respect (One PHS study participant told researchers, "I don't need my doctor to believe what I believe, but I need him to believe in me.")
Additional Lessons In addition to these five overarching lessons, several others emerged from the study. They may also lead to better care of people facing chronic illnesses:
- There seemed to be no disease-specific approach to caring for individuals with serious illnesses. That being the case, spiritual interventions should be based on the person's needs, not on his or her disease.
- Many patients emphasized the value and the importance of prayer (i.e., communication with God). They saw prayer as especially powerful when it was done with others.
- Although participants tended to describe God as possessing "paternal" characteristics, they saw supportive relationships in terms of "feminine" ones (i.e., nurturing, caring, warm). Caregivers must somehow learn to balance these qualities.
- Beliefs in God and spirituality are expressed in many ways other than through religious activities. People experience God, for example, in relationships, nature, music, art, and pets. Effective spiritual care providers will integrate these expressions of spirituality.
- Given the importance of relationships, hospitals should make sure that patients' relationship needs are met. Doing so may include offering patient support services at all times of the day and night, as well as ensuring that patients can spend time with family and friends as they need, not as dictated by visiting hours or other policies.
Not Just for Chaplains
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 providers — not just chaplains — to 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.
Dr. 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.
|COSPONSORS OF THE SPIRITUALITY PROJECT
The Providence Health System study was cosponsored by:
- Sisters of Providence Health System, Seattle
- Carondelet Health System, St. Louis
- Catholic Health Initiatives, Denver
- Catholic Healthcare West, San Francisco
- Daughters of Charity National Health System, St. Louis (now Ascension Health)
- St. Joseph Health System, Orange, CA
- Catholic Health Association, St. Louis
1. D. Lukoff, et al., "Religious and Spiritual Case Reports on MEDLINE: A Systematic Analysis of Records from 1980 to 1996," Alternative Therapies in Health & Medicine, January 1999, pp. 64-70.
2. D. S. Martsolf, "Cultural Aspects of Spirituality in Cancer Care," Seminars in Oncology Nursing, November 1997, pp. 231-236.
3. G. Laukhuf and H. Werner, "Spirituality: The Missing Link," Journal of Neuroscience Nursing, February 1998, pp. 60-67.
4. J. Schuster, "Wholistic Care: Healing a 'Sick' System," Nursing Management, June 1997, pp. 56-60.
5. P. Reed, "An Emerging Paradigm for the Investigation of Spirituality in Nursing," Research in Nursing & Health, October 1992, pp. 349-357.
6. The participants, who came from a wide range of spiritual backgrounds, were invited to join the study by their treating physicians and nurses, not by the researchers. The research team was made up of chaplains, nurses, and social workers who for this study were trained in interview protocol. The interviews were conducted either in healthcare facilities or the participants' homes, depending on the participants' needs and preferences. The questions were developed from earlier focus group discussions involving a small pool of participants. In addition to the interviews, participants completed questionnaires concerning their mood states and ability to function physically.
7. S. Vaughan, "The Gentle Touch," Journal of Clinical Nursing, November 1995, pp. 359-368.
|DIFFICULTIES INVOLVED IN THE PHS STUDY
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:
- Conceptual barriers (e.g., a lack of consensus concerning the meaning of such terms as "spirituality" and "religion")
- Methodological barriers (e.g., those involved in establishing appropriate control groups, since participants cannot simply be assigned to "spiritual" and "nonspiritual" groups)
- Structural barriers separating religion and science (e.g., the fact that public funds cannot be used for "religious" purposes, which makes it difficult for researchers to engage in scientific research in spirituality)
- Professional disincentives to engaging in work that involves spirituality (e.g., the tendency of contemporary social scientists to disparage such "subjective" endeavors)
We who conducted the PHS study realized that our project had several additional limitations. The biggest was the fact that all the interviews were completed before analysis began. Qualitative research is a process usually composed of many intermediate steps, enabling the researcher to periodically examine the data and refine the study design. Because the scope of this study did not allow us to follow this cyclical pattern, we were unable to achieve the clarity of understanding that a more traditional qualitative design would have allowed.
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:
- Could you help me understand what gives your life meaning?
- How does this (refer to question 1) impact your life (relate to your everyday life)?
- Does a higher power or guiding force (God, Spirit) play a significant role in your life? What role is that?
- How do you express your belief in God or a higher power?
Interviewers also asked questions concerning participants' views of connection between spirituality, on one hand, and health and well-being, on the other.
- What do you do to heal your spirit?
- What makes you feel good?
- What brings you joy in your life? Describe a time you have felt that way.
- What brings you peace? Describe a time you have felt at peace.
- Describe the relationship of your spiritual beliefs to illness and health.
- What is the cause of your illness? What was happening in your life at the time of your diagnosis?
- Do you see a relationship bewtween stress and your illness?
- Does illness interfere with your life goals?
- How has your illness influenced your belief in a higher power or God?
- How hopeful are you about obtaining a better degree of health?
- What helps your healing? What stands in the way of healting?
- Will you be able to make changes in your life to maintain your health?
- What choices are available to you to enhance your healing?
- Do you feel well prepared to take on the process of achieving wellness and restoring health?
Participants were asked about various elements of spiritual care.
- What do you need to feel spiritually supported at this time (or to restore your inner strength)?
- What do you do to feed and nurture your spiritual life?
- What can others do to feed and nurture your spiritual life?
And, finally, participants were asked several questions concerning the growth of their spirituality over the course of the illness.
- Do you share your beliefs with others? Are you aware of your beliefs?
- Are you suffering now? How are you suffering? Why do you think you are suffering?
- What is beautiful in your life at this time? (What would you like to bring into your life at this time?)
|FIVE EMERGING THEMES
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."
Copyright © 2000 by the Catholic Health Association of the United States
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