August 2006 Article of the Month
Erde, E., Pomerantz, S. C., Saccocci, M., Kramer-Feeley, V. and Cavalieri, T. A. [Department of Medicine, School of Osteopathic Medicine, University of Medicine and Dentistry of New Jersey, Stratford, NJ]. "Privacy and patient-clergy access: perspectives of patients admitted to hospital." Journal of Medical Ethics 32, no. 7 (July 2006): 398-402.
This monthís article looks into patientsí attitudes about being placed on hospital lists according to their religion, for the purpose of visitation by clergy. The listing of patients on a religion census is a practical concern for many pastoral care departments, especially in light of HIPAA (Health Insurance Portability and Accountability Act) privacy regulations. The research here paints a somewhat mixed picture of patientsí attitudes but generally suggests that only a minority of patients have a positive attitude about the practice. However, this reader has reservations about the studyís assumptions and methodology.
SUMMARY: One-hundred-ninety-two inpatients at a university-affiliated hospital, who had been admitted for at least 24 hours, were asked by the floor nurse to participate in the study. The 179 patients who agreed then participated in interviews consisting of 78 questions: 38 questions regarding demographic information, and 40 questions regarding "preferences and attitudes about confidentiality and pastoral support" [p. 400] that were answered using a five-point Likert scale ranging from strongly disagree to strongly agree. The "primary questions" and responses were:
--See Table 2 on p. 399 and the list of "primary questions" on p. 400. It is reasonable to assume that the "Yes" responses are an amalgamation of the two positive options on one end of the five-point Likert scale, but this is not stated in the article.
Logistical regression analysis explored the role of age, education, and frequency of praying:
Those who prayed more frequently were five times as likely to be willing to have their name on a list by religion and wanting the list given to the clergy without their consent. Praying more often was also related to being less likely to feel that their sense of privacy would be violated. Being a high-school graduate, as compared with having less education, increased the odds that the patient believed that disclosure of name and religion violated a patientís rights. Also, education (specifically having a high-school education) tended towards increasing the odds that patients believed their sense of privacy was violated. The logistic regressions explained about 10-17% of the variance of the questions. [p. 401]
The authors note that their findings "suggest a complex set of values and dispositions" and, "Ultimately some findings seem contradictory" [p. 402].
Hence, whereas most patients welcomed a visit by their own clergy resulting from their name being listed by the hospital, almost half believed that giving clergy their name without permission violated their privacy, and a slight majority thought this disclosure violated the rules. [p. 402]Further, among their observations:
Personal preferences and patientsí rights were not perceived as the same issue: about 17% of the people who were willing to put their name and religion on a list believed their personal sense of privacy would be violated if their names were put on a list without permission. [p. 402]
In their discussion, the authors consider the conflict between concerns for patients' privacy and for their spiritual support and conclude that there is "no happy solution," though they continue:
The simplest solution favouring confidentiality is to have hospitals ask permission on admission or as soon as someone can speak for the patient. The simplest solution favouring patientsí desires is to have hospitals continue making the lists and notifying clergy without patientsí consent; then some sort of opt-out mechanism should be available. [p. 402]
COMMENT: While I appreciate the attempt to explore patients' perspectives on having their names listed according to religion for the purpose of clergy visitation, I am concerned about the validity and generalizability of these findings--findings that are likely to stand out in the literature because of the absence of comparable studies. My concern is twofold: about the wording of the "primary questions" (noted above) and assumptions about models of pastoral care that they seem to imply. My concern also has a very practical basis: namely, even though I strongly support the practice of listing patients' names according to religion for the purpose of pastoral care, and even though I would want my own name so listed if I were hospitalized, my reaction to the "primary questions" here, when I imagined responding to them as part of the study, was quite negative. I do not believe that the methodology of this study would have captured my own preferences and attitudes on the subject.
In my opinion, the first flaw in the construction of the "primary questions" is the inclusion of red-flag language: for instance, "any clergy" [my emphasis] or "without your permission." I myself would not want the hospital to give my information to just any clergy, but rather clergy who had been assessed and cleared as appropriate for hospital visitation (e.g., had experience in the clinical setting and in pastoral care with diverse patients). Moreover, a phrase like "without your permission" makes me wonder whether the hospital would care to ask in the first place--it raises in me skepticism about institutional/bureaucratic mechanisms in general. The result is that I would tend to respond quite negatively to the question, "Would you want the hospital to give such a list to any clergy without your permission?" and I had similar reactions to all except the question about "a visit by your own clergy"--that last question did not strike me as worrisome in its wording, and in fact it is the one question that the research participants responded to very positively.
The second flaw in the questions--and in assumptions behind the research as a whole--centers on a sense of a narrow and largely antiquated model of pastoral care based upon a relatively simple and monolithic image of "the clergy" in which the idea of religious diversity isn't more pronounced than perhaps the difference between a Catholic Priest and a Presbyterian Minister or just maybe a Rabbi. The phrase the clergy seems problematically ambiguous for language in a context where diversity issues are salient. Now I am sure that in some community hospitals in small towns where "the clergy" are a definite and particularly namable group that this language would be clear (and in such a setting it is possible that some hospitals still simply have local clergy pick up a list of patients, because the particular clergy are known). However, in large hospitals and in densely-populated areas, diversity issues are often critical, and the provision of pastoral care is quite complicated, hence the role of CPE-trained chaplains and the great difference in response required from a hospital if a patient says, "Please call a pastor" as opposed to, "Please call my pastor."
I am surprised that the two points that I have raised did not come up for the researchers during their piloting of the questions with ten outpatients or from patients' comments during the full interview process. Of course, my own reactions here may not be broadly representative. Nevertheless, I am concerned that hospitals may take as authoritative guidance the negative responses of participants in this study. The authors themselves caution, "More investigation is needed in exploring the boundary created by policy intended to protect privacy and institutional procedures aimed at assuring holistic care, which includes the spiritual dimension" [p. 402]. No chaplains were involved in the present study (and only Thomas A. Cavalieri, DO, appears to have been an experienced direct-care provider--the lead author, by the way, is an ethicist). In furthering the exploration of this subject, chaplain researchers might well focus on the language of the inquiry.
Suggestions for the Use of the Article for Discussion in CPE:
Students could (as I did) respond to the five "primary questions" and then discuss the similarities and differences between their responses and the study's findings. The article could also be an effective entree into the broad issue of privacy concerns and HIPAA and/or the tension between privacy concerns and the provision of pastoral support, especially in light of the possibility that some patients who could use pastoral care may not be inclined to ask for it. Regarding the latter, students may also want to read the study by Fitchett (cited on p. 399 of the present study), noted in Related Items of Interest, below. Students might also want to enumerate the various pathways by which patients receive pastoral support in the hospital and then think in each case how those pathways involve the gathering and communication of information about the patient. Another topic for discussion--and one for research--is how patients might feel differently about the gathering and communication of spiritual information for use by 1) non-clergy hospital staff, as with a nurse conducting a spiritual assessment, 2) in-house chaplains, 3) patients' own clergy, and 4) unfamiliar local clergy.
Related Items of Interest:
Bush, J. F, Jr. "Informed consent and parish clergy." The Journal of Pastoral Care & Counseling: JPCC 57, no. 4 (Winter 2003): 427-436. [This article--not a research article--may be of tangential interest, in that its discussion of informed consent between congregants and clergy raises some issues of information exchange and privacy. It is written from within a Christian context.]
Fitchett, G., Meyer, P. M. and Burton, L. A. "Spiritual care in the hospital: Who requests it? Who needs it?" Journal of Pastoral Care 54, no. 2 (Summer 2000): 173-186. [This article was also cited in the Related Items of Interest section of the March 2003 Article of the Month.]
Neels, R. J. "The horizontal perspective: a study of patientsí attitudes towards hospital chaplains." New Zealand Journal of Medicine 85 (1977): 429-432. [This older study is of interest as the model for some of the questions used in the present study.]For more about HIPAA, see the Office for Civil Rights - HIPAA page from the US Department of Health and Human Services. Among the resources addressing the HIPAA Privacy Rule and its application to clergy, see the Frequently Asked Questions page for "Are hospitals able to inform the clergy about parishioners in the hospital?"
If you have suggestions about the form and/or content of the site, e-mail Chaplain John Ehman (Network Convener) at firstname.lastname@example.org .