Journal of Religion and Health

, Volume 45, Issue 2, pp 248–263 | Cite as

Making Sense of Suffering and Death: How Health Care Providers’ Construct Meanings in a Neonatal Intensive Care Unit

  • Wendy Cadge
  • Elizabeth A. Catlin


Biomedical technology has progressed at a pace that has created a new set of patient care dilemmas. Health care providers in intensive care units where life-sustaining therapies are both initiated and withdrawn encounter clinical scenarios that raise new existential, theological, and moral questions. We hypothesized that there might be broad patterns in how such staff understand these questions and make sense and meaning from their work. Such meaning making might be the key to working with the critically ill and dying while helping to create and sustain a meaningful context for personal living. This article presents themes evident in an in depth analysis of open-text responses to a spiritual and religious questionnaire survey completed by staff in one neonatal intensive care unit. The data reveal the central roles of perceived infant suffering and death in these providers’ work experience and details how they understand the ultimate meaning of the suffering and death. We investigate patterns in how different providers articulate their individual attributes and motivations for working in intensive care. We found a surprising range of religious, spiritual, existential, and other meaning-making systems that underpin how staffs understand their work and how, certain of them, even define their purpose in life as caring for critically ill infants and their families.


neonatology health care providers religion and spirituality suffering death. 



This project was made possible by the Kenneth B. Schwartz Foundation and the support of the Robert Wood Johnson Foundation Scholars in Health Policy Research Program.


  1. Anspach R.R., (1987). Prognostic conflict in life-and-death decisions: The organization as an ecology of knowledge Journal of Health and Social Behavior 28(3):215–231PubMedCrossRefGoogle Scholar
  2. Anspach R.R., (1993). Deciding Who Lives: Fateful Choices in the Intensive-Care Nursery University of California Press, BerkeleyGoogle Scholar
  3. Armbruster C.A., Chibnall J.T., Legett S., (2003). Pediatrician beliefs about spirituality and religion in medicine: Associations with clinical practicePediatrics 111:e227–e235CrossRefPubMedGoogle Scholar
  4. Arnetz B., (2001). Psychosocial challenges facing physicians today Social Science and Medicine 52(2):203–213CrossRefPubMedGoogle Scholar
  5. Baker J., (1996). The Machine in the Nursery: Incubator Technology and the Origins of Newborn Intensive Care The Johns Hopkins University Press, BaltimoreGoogle Scholar
  6. Berger P., Luckmann T., (1966). The Social Construction of Reality: A Treatise in the Sociology of Knowledge Doubleday, Garden City NYGoogle Scholar
  7. Catlin E.A., Guillemin J.H., Thiel M.M., Hammond S., Wang M., O’Donnell J., (2001). Spiritual and religious components of patient care in the neonatal intensive care unit: Sacred themes in a secular setting Journal of Perinatology 21:426–430CrossRefPubMedGoogle Scholar
  8. Chopra S.S., Sotile W.M., Sotile M.O., (2004). Physician burnout Student Journal of the American Medical Association 291(5):633CrossRefGoogle Scholar
  9. Clarke T.A. et al. (1984). Job satisfaction and stress among neonatologistsPediatrics 74:52–57PubMedGoogle Scholar
  10. Cone T.E. Jr., (1985). History of the Care and Feeding of the Premature Infant. Little Brown and Company, BostonGoogle Scholar
  11. Desmond M.M., (1998). Newborn Medicine and Society: European Background and American Practice (1750)/1975). Eakin Press, AustinGoogle Scholar
  12. Downey V., Bengiamin M., Heuer L., Juhl N., (1995). Dying babies and associated stress in NICU nurses Neonatal Network 14(1):41–46PubMedGoogle Scholar
  13. Farah A., (1996). The history of the neonatal nurse practitioner in the United States Neonatal Network 15(5):11–21PubMedGoogle Scholar
  14. Fox, R. (1988). The human condition of health professionals. In Essays in Medical Sociology: Journeys into the Field (pp. 572–587). New Brunswick: Transaction BooksGoogle Scholar
  15. Foxall M.J., Zimmerman L., Standley R., Bene B., (1990). A comparison of frequency and sources of nursing job stress perceived by intensive care, hospice and medical-surgical nursesJournal of Advanced Nursing 15(5):577–584PubMedCrossRefGoogle Scholar
  16. Frohock F.M., (1986). Special Care: Medical Decisions at the Beginning of Life. University of Chicago Press, ChicagoGoogle Scholar
  17. Grant D., O’Neil K., Stephens L., (2004). Spirituality in the workplace: New empirical directions in the study of the sacredSociology of Religion 65(3):265–283CrossRefGoogle Scholar
  18. Guillemin J., (1984). Priceless lives and medical costs: The case of newborn intensive careResearch in the Sociology of Health Care 3:115–134Google Scholar
  19. Guillemin J.H., Holmstrom L.L., (1986). Mixed Blessings: Intensive Care for Newborns. Oxford University Press, New YorkGoogle Scholar
  20. Guntupalli K.K., Fromm R.E. Jr., (1996). Burnout in the Internist-Intensivist Intensive Care Medicine 22(7):625–630PubMedCrossRefGoogle Scholar
  21. Hall, D.D., (ed.), (1997). Lived Religion in America: Toward a History of Practice. Princeton: Princeton University PressGoogle Scholar
  22. Heimer C., (1999). Competing institutions: Law, medicine, and family in neonatal intensive care Law & Society Review 33(1):17–66CrossRefGoogle Scholar
  23. Heimer C.A., Staffen L.R., (1995). Interdependence and reintegrative social control: Labeling and reforming ‘inappropriate’ parents in neonatal intensive care units American Sociological Review 60(5):635–654CrossRefGoogle Scholar
  24. Heimer C.A., Stevens M.L., (1997). Caring for the organization: Social workers as frontline risk managers in neonatal intensive care units Work and Occupations 24(2):133–163CrossRefGoogle Scholar
  25. Hoff T., Whitcomb W.F., Nelson J.R., (2002). Thriving and surviving in a new medical career: The case of hospitalist physiciansJournal of Health and Social Behavior 43(1):72–91PubMedCrossRefGoogle Scholar
  26. Lake E.T., (1998). Advances in understanding and predicting nurse turnoverResearch in the Sociology of Health Care 15:147–171Google Scholar
  27. Landzelius K.M., (2003). Humanizing the imposter: Object relations and illness equations in the neonatal intensive care unit Culture, Medicine, and Psychiatry 27:1–28CrossRefGoogle Scholar
  28. Lantos J.D., (2001). The Lazarus Case: Life and Death Issues in Neonatal Intensive Care. The Johns Hopkins University Press, BaltimoreGoogle Scholar
  29. Leigh J.P., Kravitz R.L., Schembri M., Samuels S.J., Mobley S., (2002). Physician career satisfaction across specialties Archives of Internal Medicine 162:1577–1584CrossRefPubMedGoogle Scholar
  30. Lussky R.C., (1999). A century of neonatal medicine Minnesota Medicine 82:1–8Google Scholar
  31. Lyon J., (1985). Playing God in the Nursery. W. W. Norton & Company, New YorkGoogle Scholar
  32. Mansfield C.J., Mitchell J., King D.E., (2002). The doctor As God’s mechanic? Beliefs in the Southeastern United States Social Science and Medicine 54:399–409CrossRefPubMedGoogle Scholar
  33. McNamara B., Waddell C., Colvin M., (1995). Threats to the good death: The cultural context of stress and coping among hospice nurses Sociology of Health and Illness 17(2):222–244CrossRefGoogle Scholar
  34. Messikomer C.M., De Craemer W., (2002). The spirituality of academic physicians: An ethnography of a scripture-based group in an academic medical center Academic Medicine 77(6):562–573PubMedCrossRefGoogle Scholar
  35. Neuer L., Bengiamin M., Downey V.W., Imler N.J., (1996). Neonatal Intensive Care Nurse Stressors: An American study British Journal of Nursing 5(18):1126–1130PubMedGoogle Scholar
  36. Oehler J.M., Davidson M.G., (1992). Job stress and burnout in acute and nonacute pediatric nurses American Journal Critical Care 1(2):81–90Google Scholar
  37. Orfali K., (2004). Parental role in medical decision-making: Fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units Social Sciences and Medicine 58(10):2009–2022CrossRefGoogle Scholar
  38. Palmer C.E., Noble D.N., (1985). Nurse–neonate relationships: The creation of symbolic interaction within a neonatal intensive care unitSociological Spectrum 5:331–345CrossRefGoogle Scholar
  39. Pinch W.J.E., (2002). When the Bough Breaks: Parental Perceptions of Ethical Decision-Making in NICU. University Press of America, New YorkGoogle Scholar
  40. Puchalski C.M., Larson D.B., (1998). Developing curricula in spirituality and medicine Academic Medicine 73:970–974CrossRefPubMedGoogle Scholar
  41. Raju, T.N. (2002). A.A. Fanaroff and R.J. Martin. (eds.), From Infant Hatcheries to Intensive Care: Some Highlights of the Century of Neonatal Medicine. Neonatal-Perinatal Medicine, MosbyGoogle Scholar
  42. Rashotte J., Fothergill-Bourbonnais F., Chamberlain M., (1997). Pediatric intensive care nurses and their grief experiences: A phenomenological study Heart Lung 26(5):372–386CrossRefPubMedGoogle Scholar
  43. Reddick B.H., Catlin E.A., Jellinek M.S., (2001). Crisis within crisis: Recommendations for defining, preventing, and coping with stressors in the neonatal intensive care unitJournal of Clinical Ethics 12(3):254–265PubMedGoogle Scholar
  44. Robinson S.E., Roth S.L., Keim J., Levenson M., Flentje J.R, Bashor K., (1991). Nurse burnout: Work related and demographic factors as culpritsResearch in Nursing and Health 14(3):223–228PubMedCrossRefGoogle Scholar
  45. Shugerman, R., Linzer, M., Nelson, K., Douglas, J., Williams, R., and Konrad, R., for the Career Satisfaction Group. (2001). Pediatric generalists and subspecialists: Determinants of career satisfaction. Pediatrics 108, 1–6Google Scholar
  46. Sosnowitz B.G., (1984). Managing parents on neonatal intensive care unitsSocial Problems 31(4):390–402CrossRefGoogle Scholar
  47. Strauss A.L., (1968). The intensive care unit: Its characteristics and social relationships Nursing Clinics of North America 3:7–15PubMedGoogle Scholar
  48. Strauss A.L., Corbin J., (1990). Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Sage, Newbury Park, CAGoogle Scholar
  49. Thomas N.K., (2004). Resident burnout Journal of the American Medical Association 292(23):2880–2889CrossRefPubMedGoogle Scholar
  50. Weir R., (1984). Selective Nontreatment of Handicapped Newborns: Moral Dilemmas in Neonatal Medicine. Oxford University Press, New YorkGoogle Scholar
  51. Wuthnow R., (1998). After Heaven: Spirituality in America Since the (1950)s. University of California Press, BerkeleyGoogle Scholar
  52. Zupancic J.A., Richardson D.K., (2002). Characterization of neonatal personnel time inputs and prediction from clinical variables – a time a motion study Journal of Perinatology 22(8):658–663CrossRefPubMedGoogle Scholar

Copyright information

© Blanton-Peale Institute 2006

Authors and Affiliations

  1. 1.Bowdoin CollegeBrunswickUSA

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