October 2002 Article of the Month
This month's article selection is by Chaplain John Ehman, Presbyterian Medical Center, Philadelphia PA
Hermann, C. P. [School of Nursing, University of Louisville, KY; email@example.com]. "Spiritual needs of dying patients: a qualitative study." Oncology Nursing Forum 28, no. 1 (January-February 2001): 67-72.
Comment: The stated purpose of the investigation was "to identify dying persons' definitions of spirituality and their spiritual needs" (p. 67). Nineteen hospice patients participated in semi-structured interviews, the content of which was analyzed by thematic coding of verbatim phrases. Patients were asked: "What does the word spiritual mean to you personally?" and "What needs can you identify related to your spirituality as you described it?" Definitions of spirituality were at first associated with God or religion but "as interviews progressed, it became apparent that [participants'] spirituality was a part of their total existence" (p. 69). Analysis identified twenty-nine distinct spiritual needs, which were grouped into six thematic categories: need for religion, need to finish business, need for companionship, need for involvement and control, need for positive outlook, and need to experience nature. The author discusses the breadth both of the definitions and of the perceived needs as often including, but seemingly transcending, formal religion.
For all of the attention given in recent years to spirituality in the area of death and dying, there has been precious little research into the practical matter of the spiritual needs of the terminally ill. The vast majority of articles on this specific subject are anecdotal or theoretical, drawing on related research (e.g., on coping). Hermann makes a significant contribution by indicating how varied the themes of spiritual need may be for dying patients. She also makes a methodological contribution by pairing her inquiry about needs with one about definitions. Thus, ambiguity about the definition of spirituality [see the September 2002 Articles of the Month web page] is incorporated into her method instead of being problematic to it. However, it seems curious, at least to this reader, that there is a relative lack of affect manifested in the identified needs/themes, perhaps either because of the character of the analysis or because the phasing of the needs-focused question may have drawn people to respond more intellectually than emotionally.
Because Herman writes clearly in general, organizes her presentation effectively, and illustrates well her points with quotes from the interviews, the article can be quite engaging for CPE students, even though the intended audience is obviously one of nurses. It raises important questions for chaplains about the compass of spiritual needs, the use of the language of spirituality (and its implications for spiritual assessment), practical concerns about care for the dying, and the use of research as a modality for understanding pastoral matters. The two questions that anchored the interviews can be posed to students before or after reading the article, and the group discussion of these questions can then be compared to the overall analysis of the study interviews. Also, the article lends itself to discussion of how pastoral interventions might be coordinated with nursing interventions pertinent to patients' spiritual needs. Finally, Hermann's qualitative methodology should be easily comprehended by students who are not yet versed in research, and the article is of a good length for discussion: at six pages, it offers a wealth of information without being overwhelming.
[ADDED 10/6/08]: Anderson, H. "Living until we die: reflections on the dying person's spiritual agenda." Anesthesiology Clinics 24, no. 1 (March 2006): 213-225. [Though not a report of research, this "reflection" by a physician is research-minded and touches on a number of spiritual issues and addresses questions of caregiving.]
[ADDED 10/6/08]: Daaleman, T. P., Usher, B. M., Williams, S. W., Rawlings, J. and Hanson, L. C. "An exploratory study of spiritual care at the end of life." Annals of Family Medicine 6, no. 5 (September-October 2008): 406-411. [(From the abstract:) ...Our study was based on qualitative research using key informant interviews and editing analysis with 12 clinicians and other health care workers nominated as spiritual caregivers by dying patients and their family members. RESULTS Being present was a predominant theme, marked by physical proximity and intentionality, or the deliberate ideation and purposeful action of providing care that went beyond medical treatment. Opening eyes was the process by which caregivers became aware of their patientís life course and the individualized experience of their patientís current illness. Participants also described another course of action, which we termed cocreating, that was a mutual and fluid activity between patients, family members, and caregivers. Cocreating began with an affirmation of the patientís life experience and led to the generation of a wholistic care plan that focused on maintaining the patientís humanity and dignity. Time was both a facilitator and inhibitor of effective spiritual care....]
Daaleman, T. P. and VandeCreek, L. "Placing religion and spirituality in end-of-life care." JAMA 284, no. 19 (November 15, 2000): 2514-17. [This research-aware commentary offers a brief overview of the subject that may be helpful to those who are newly exploring the literature or considering research possibilities.]
Fryback, P. B. and Reinert, B. R. "Spirituality and people with potentially fatal diagnoses." Nursing Forum 34, no. 1 (January-March 1999): 13-21. [This qualitative analysis of interviews with 15 cancer and AIDS patients (convenience sample) may be valuable in suggesting themes (under the headings of belief in a higher power, recognition of mortality, and self-actualization) for further research. The authors mix the presentation of their results with a fairly free-flowing discussion of the implicit concepts. They have written primarily for a nursing audience, but the article is generally engaging.]
[ADDED 10/6/08]: Hermann, C. P. "The degree to which spiritual needs of patients near the end of life are met." Oncology Nursing Forum 34, no. 1 (January 2007): 70-78. [(From the abstract:) ÖWomen, patients residing in a nursing home or an inpatient hospice unit, and patients with lower levels of education reported a higher number of unmet spiritual needs. Needs that could be met independently by patients and were not related to functional status were met at a higher rate than those that were dependent on others and on functional status.]
[ADDED 8/8/06]: Hermann, C. P. "Development and Testing of the Spiritual Needs Inventory for Patients Near the End of Life." Oncology Nursing Forum 33, no. 4 (July 2006): 737-744. [The instrument set forth here was developed out of Hermann's 2001 qualitative study of spiritual needs. The Spiritual Needs Inventory (SNI) was piloted with 100 hospice patients, with the conclusion that it "holds promise as a valid and reliable measure of spiritual needs of people near the end of life" (p. 743), however, test-retest reliability was not assessed. The 17-item instrument has five domains: outlook, inspiration, spiritual activities, religion, and community. In her discussion, the author notes "additional planned revisions of the SNI" (p. 743).]
[Added 6/15/05:] Murray, S. A., Kendall, M., Boyd, K., Worth, A. and Benton, T. F. [Div. of Community Health Sciences, University of Edinburgh, Scotland; Scott.Murray@ed.ac.uk]. "Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers." Palliative Medicine 18, no. 1 (Jan 2004): 39-45. [This Scottish study interviewed 20 patients with inoperable lung cancer and 20 patients with end-stage heart failure and their informal carers at three-month intervals for up to a year, for a total of 149 interviews. Participants initially indicated some reluctance to discuss spiritual issues, and the authors note the need for communication skills and adequate time to address spiritual issues. Needs expressed included those of love, meaning, purpose and sometimes transcendence. There was some difference in the patterns of needs according to group differences in the experiences of lung cancer and heart failure.]
Nelson, C. J., Rosenfeld, B., Breitbart, W. and Galietta, M. "Spirituality, religion, and depression in the terminally ill." Psychosomatics 43, no. 3 (May-June 2002): 213-20. [This recent study of 162 cancer and AIDS patients with a life expectance of less than six months incorporated the increasingly popular Functional Assessment of Cancer Therapy (FACIT) Spiritual Well-Being Scale. There was found to be a strong negative correlation between spiritual well-being and depression but not for religiosity and depression. The article raises questions about the distinction between spirituality and religiosity for research and the relationship of spiritual well-being to spirituality.]
Post-White, J., Ceronsky, C., Kreitzer, M. J., Nickelson, K., Drew, D., Mackey, K. W., Koopmeiners, L. and Gutknecht, S. "Hope, spirituality, sense of coherence, and quality of life in patients with cancer." Oncology Nursing Forum 23, no. 10 (November-December 1996): 1571-9. [This qualitative/quantitative study indicated, among other things, that participants (n=32) "felt that spiritual beliefs and relationships were important to their hope" (though it should be noted that this was not backed up by correlations with the Herth Hope Scale). The study is methodologically interesting, and hope is an important concept for spirituality research.]
Reed, P. G. "Preferences for spiritually related nursing interventions among terminally ill and nonterminally ill hospitalized adults and well adults." Applied Nursing Research 4, no. 3 (August 1991): 122-8. [This (older) study of 300 participants, utilizing a questionnaire listing potential nursing interventions, showed a preference for nurses to "arrange a visit with a minister, priest or rabbi." Other strong responses were: "allow time for personal prayer" and "provide time for family." Significant differences in responses were found across the three groups of terminally ill patients, non-terminally ill patients and persons who are well.]
Smith, E. D., Stefanek, M. E., Joseph, M. V., Verdieck, M. J., Zabora, J. R. and Fetting, J. H. "Spiritual awareness, personal perspective on death, and psychosocial distress: an initial investigation." Journal of Psychosocial Oncology 11, no. 3 (1993): 89-103. [This early-'90s quantitative study of 116 cancer patients works from a construct of an interactive process of "spiritual awareness and personal perspective regarding death," which was found to have a negatively correlation to psychosocial distress. It raises the point that spiritual needs around death and dying may come into play for patients from the moment of the diagnosis of such a disease as cancer, regardless of prognosis.]
[Added 6/15/05:] Stansworth, R., Recognizing Spiritual Needs in People Who Are Dying Oxford: Oxford University Press, 2004. 255 pp. [This book addresses (in part 3 of its 4 parts) metaphors drawn from research data, including those of "letting go" and "control."]
Steinhauser, K. E., Clipp, E. C., McNeilly, M., Christakis, N. A., McIntyre, L. M. and Tulsky, J. A. "In search of a good death: observations of patients, families, and providers." Annals of Internal Medicine 132, no. 10 (May 16, 2000): 825-32. [In this qualitative study, transcribed content from 12 focus groups (75 participants, total) was analyzed from a grounded theory approach. Six process-oriented components of a "good death" were identified: clear decision making, preparation for death, completion contributing to others, and affirmation of the whole person. The authors explore the spiritual (as well as the biomedical, psychological, and social) aspects of these component themes, and they refer to the work of chaplains throughout the article.]
[ADDED 10/6/08]: Williams, A. L. "Perspectives on spirituality at the end of life: a meta-summary." Palliative & Supportive Care 4, no. 4 (December 2006): 407-417. [OBJECTIVE: A meta-summary of the qualitative literature on spiritual perspectives of adults who are at the end of life was undertaken to summarily analyze the research to date and identify areas for future research on the relationship of spirituality with physical, functional, and psychosocial outcomes in the health care setting. METHODS: Included were all English language reports from 1966 to the present catalogued in PubMed, Medline, PsycInfo, and CINAHL, identifiable as qualitative investigations of the spiritual perspectives of adults at the end of life. The final sample includes 11 articles, collectively representing data from 217 adults. RESULTS: The preponderance of participants had a diagnosis of cancer; those with HIV/AIDS, cardiovascular disease, and ALS were also represented. Approximately half the studies were conducted in the United States; others were performed in Australia, Finland, Scotland, and Taiwan. Following a process of theme extraction and abstraction, thematic patterns emerged and effect sizes were calculated. A spectrum of spirituality at the end of life encompassing spiritual despair (alienation, loss of self, dissonance), spiritual work (forgiveness, self-exploration, search for balance), and spiritual well-being (connection, self-actualization, consonance) emerged. SIGNIFICANCE: The findings from this meta-summary confirm the fundamental importance of spirituality at the end of life and highlight the shifts in spiritual health that are possible when a terminally ill person is able to do the necessary spiritual work. Existing end-of-life frameworks neglect spiritual work and consequently may be deficient in guiding research. The area of spiritual work is fertile ground for further investigation, especially interventions aimed at improving spiritual health and general quality of life among the dying.]
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