“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine

Abstract

Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families’ spiritual backgrounds and needs in ways that respectfully open the door to these conversations.

This is a preview of subscription content, access via your institution.

References

  1. Alcorn, S. R., Balboni, M. J., Prigerson, H. G., Reynolds, A., Phelps, A. C., Wright, A. A., et al. (2010). “If God wanted me yesterday, I wouldn’t be here today”: Religious and spiritual themes in patients’ experiences of advanced cancer. Journal of Palliative Medicine, 13(5), 581–588.

    Article  Google Scholar 

  2. Anandarajah, G., & Hight, E. (2001). Spirituality and medical practice: Using the HOPE questions as a practical tool for spiritual assessment. American Family Physician, 63(1), 81–89.

    CAS  PubMed  Google Scholar 

  3. Arutyunyan, T., Odetola, F., Swieringa, R., & Niedner, M. (2018). Religion and spiritual care in pediatric intensive care unit: Parental attitudes regarding physician spiritual and religious inquiry. American Journal of Hospice & Palliative Medicine, 35(1), 28–33.

    Article  Google Scholar 

  4. Balboni, T. A., & Balboni, M. J. (2018). The Spiritual event of serious illness. Journal of Pain and Symptom Management, 56(5), 816–822.

    Article  Google Scholar 

  5. Balboni, T. A., Balboni, M., Enzinger, A. C., Gallivan, K., Paulk, M. E., Wright, A., et al. (2013a). Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA Intern Med, 173(12), 1109–1117.

    Article  Google Scholar 

  6. Balboni, T., Balboni, M., Paulk, M. E., Phelps, A., Wright, A., Peteet, J., et al. (2011). Support of cancer patients’ spiritual needs and associations with medical care costs at the end of life. Cancer, 117(23), 5383–5391.

    Article  Google Scholar 

  7. Balboni, T. A., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., et al. (2017). State of the science of spirituality and palliative care research part II: Screening, assessment, and interventions. Journal of Pain and Symptom Management, 54(3), 441–453.

    Article  Google Scholar 

  8. Balboni, T. A., Paulk, M. E., Balboni, M. J., Phelps, A. C., Loggers, E. T., Wright, A. A., et al. (2010). Provision of spiritual care to patients with advanced cancer: Associations with medical care and quality of life near death. Journal of Clinical Oncology, 28(3), 445–452.

    Article  Google Scholar 

  9. Balboni, M. J., Sullivan, A., Amobi, A., Phelps, A. C., Gorman, D. P., Zollfrank, A., et al. (2013b). Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training. Journal of Clinical Oncology, 31(4), 461–467.

    Article  Google Scholar 

  10. Balboni, M. J., Sullivan, A., Enzinger, A. C., Epstein-Peterson, Z. D., Tseng, Y. D., Mitchell, C., et al. (2014). Nurse and physician barriers to spiritual care provision at the end of life. Journal of Pain and Symptom Management, 48(3), 400–410.

    Article  Google Scholar 

  11. Baylor University. (2007). The Baylor Religion Survey, Wave II. Waco, TX: Baylor Institute for Studies of Religion. Retrieved January 18, 2019 from http://www.thearda.com/Archive/Files/Codebooks/BAYLORW2_CB.asp.

  12. Bernacki, R. E., & Block, S. D. (2014). Communication about serious illness care goals: A review and synthesis of best practices. JAMA Internal Medicine, 174(12), 1994–2003.

    Article  Google Scholar 

  13. Boyce, C., & Palena, N. (2006). Conducting in depth interviews: A guide for designing and conducting in-depth interviews for evaluation input. Watertown, MA: Pathfinder International. Retrieved January 18, 2019 from http://www2.pathfinder.org/site/DocServer/m_e_tool_series_indepth_interviews.pdf.

  14. Carey, L. B., & Cohen, J. (2009). Chaplain-physician consultancy: When Chaplains and doctors meet in the clinical context. Journal of Religion and Health, 48(3), 15.

    Article  Google Scholar 

  15. Charmaz, K. (2014). Constructing grounded theory: A practical guide through qualitative analysis (2nd ed.). London: SAGE Publication.

    Google Scholar 

  16. Childers, J. W., Back, A. L., Tulsky, J. A., & Arnold, R. M. (2017). REMAP: A framework for goals of care conversations. Journal of Oncology Practice, 13(10), e844–e850.

    Article  Google Scholar 

  17. Christensen, A. R., Cook, T. E., & Arnold, R. M. (2018). How should clinicians respond to requests from patients to participate in prayer? AMA Journal of Ethics, 20(7), E621–E629.

    Article  Google Scholar 

  18. Davies, B., Brenner, P., Orloff, S., Sumner, L., & Worden, W. (2002). Addressing spirituality in pediatric hospice and palliative care. Journal of Palliative Care, 18(1), 59–67.

    Article  Google Scholar 

  19. Ehman, J. W., Ott, B. B., Short, T. H., Ciampa, R. C., & Hansen-Flaschen, J. (1999). Do patients want physicians to inquire about their spiritual or religious beliefs if they become gravely ill? Archives of Internal Medicine, 159(15), 1803–1806.

    CAS  Article  Google Scholar 

  20. Ellis, M. R., & Campbell, J. D. (2005). Concordant spiritual orientations as a factor in physician-patient spiritual discussions: A qualitative study. Journal of Religion and Health, 44(1), 39–53.

    Article  Google Scholar 

  21. Ferrell, B. R., Twaddle, M. L., Melnick, A., & Meier, D. E. (2018). National consensus project clinical practice guidelines for quality palliative care guidelines. Journal of Palliative Medicine, 21(12), 1684–1689.

    Article  Google Scholar 

  22. Fetzer Institute/National Institute on Aging Working Group. (1999/2003). Multidimensional measurement of religiousness, spirituality for use in health research. Kalamazoo, MI: Fetzner Institute. Retrieved January 18, 2019 from https://fetzer.org/sites/default/files/images/resources/attachment/%5bcurrent-date:tiny%5d/Multidimensional_Measurement_of_Religousness_Spirituality.pdf.

  23. Johnson, J. R., Engelberg, R. A., Nielsen, E. L., Kross, E. K., Smith, N. L., Hanada, J. C., et al. (2014). The association of spiritual care providers’ activities with family members’ satisfaction with care after a death in the ICU*. Critical Care Medicine, 42(9), 1991–2000.

    Article  Google Scholar 

  24. Kelly, J. A., May, C. S., & Maurer, S. H. (2016). Assessment of the spiritual needs of primary caregivers of children with life-limiting illnesses is valuable yet inconsistently performed in the hospital. Journal of Palliative Medicine, 19(7), 763–766.

    Article  Google Scholar 

  25. MacQueen, K. M. M., McLellan, Kay K., & Milstein, B. (1998). Codebook development for team-based qualitative analysis. CAM Journal, 12(2), 31–36.

    Article  Google Scholar 

  26. Maugans, T. A. (1996). The spiritual history. Archives of Family Medicine, 5(1), 11–16.

    CAS  Article  Google Scholar 

  27. McCord, G., Gilchrist, V. J., Grossman, S. D., King, B. D., McCormick, K. E., Oprandi, A. M., et al. (2004). Discussing spirituality with patients: A rational and ethical approach. Annals of Family Medicine, 2(4), 356–361.

    Article  Google Scholar 

  28. Phelps, A. C., Lauderdale, K. E., Alcorn, S., Dillinger, J., Balboni, M. T., Van Wert, M., et al. (2012). Addressing spirituality within the care of patients at the end of life: Perspectives of patients with advanced cancer, oncologists, and oncology nurses. Journal of Clinical Oncology, 30(20), 2538–2544.

    Article  Google Scholar 

  29. Puchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., et al. (2009). Improving the quality of spiritual care as a dimension of palliative care: The report of the Consensus Conference. Journal of Palliative Medicine, 12(10), 885–904.

    Article  Google Scholar 

  30. Puchalski, C., & Romer, A. L. (2000). Taking a spiritual history allows clinicians to understand patients more fully. Journal of Palliative Medicine, 3(1), 129–137.

    CAS  Article  Google Scholar 

  31. Robinson, M. R., Thiel, M. M., Backus, M. M., & Meyer, E. C. (2006). Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics, 118(3), e719–e729.

    Article  Google Scholar 

  32. Sofaer, S. (1999). Qualitative methods: What are they and why use them? Health Services Research, 34(5 Pt 2), 1101–1118.

    CAS  PubMed  PubMed Central  Google Scholar 

  33. Steinhauser, K. E., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., et al. (2017). State of the science of spirituality and palliative care research part I: Definitions, measurement, and outcomes. Journal of Pain and Symptom Management, 54(3), 428–440.

    Article  Google Scholar 

  34. Vallurupalli, M., Lauderdale, K., Balboni, M. J., Phelps, A. C., Block, S. D., Ng, A. K., et al. (2012). The role of spirituality and religious coping in the quality of life of patients with advanced cancer receiving palliative radiation therapy. The Journal of Supportive Oncology, 10(2), 81–87.

    Article  Google Scholar 

  35. Wood, B. T., Worthington, E. L., Jr., Exline, J. J., Yali, A. M., Aten, J. D., & McMinn, M. R. (2010). Development, refinement, and psychometric properties of the Attitudes Toward God Scale (ATGS-9). Psychology of Religion and Spirituality, 2(3), 148–167.

    Article  Google Scholar 

Download references

Acknowledgments

We would like to thank Mira Shenouda for her dedication in transcribing all participant interviews.

Funding

Alan Gleitsman Student Fellowship in Palliative Care.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Laura C. McNamara.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of Pittsburgh Institutional Review Board (PRO16030282) with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in this study.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Disclaimer The views expressed in this article are held by its authors and do not represent the viewpoint of Beth Israel Deaconess Medical Center, the University of Pittsburgh or UPMC.

Appendix: Semistructured Interview Guide

Appendix: Semistructured Interview Guide

These first questions ask about your general beliefs regarding the role of spiritual supportive services in the healthcare field. These services are any form of care that recognize the patient or family’s religion or spirituality while attending to any spiritual needs that arise during medical care.

  1. (1)

    Are there sources of strength other than the promise of medical technology to which you turn during illness?

  2. (2)

    What role do you think religious or spiritual care should play in a person’s healthcare?

    Follow-up Probes:

    • Tell me more about why you feel that way.

These next questions ask about any personal experiences with religious or spiritual care throughout the course of your child’s illness.

  1. (1)

    Do you feel like you have had any religious and/or spiritual needs since your child’s diagnosis?

    If “Yes” Follow-up Probes:

    • Tell me more.

    • How well do you feel like your religious and/or spiritual needs have been met during your child’s illness?

    • What has been most helpful in meeting these needs?

    • What has been missing?

    • Is there anything that would be more helpful?

  2. (2)

    Now, I’d like you to think about if you have ever had a conversation about your religious or spiritual beliefs and/or needs with a member of your child’s medical team. The medical team consists of anyone participating in your child’s care, such as nurses, physicians, therapists, chaplains, social workers, child life, etc. If you have had more than one conversation, I’d like you to tell me about a conversation that was particularly helpful to you or that went well.

    Follow-up Probes:

    • Tell me more about that conversation. When did this conversation occur, specifically within the context of your child’s medical care?

    • What did you talk about?

    • Who initiated this conversation?

    • Who was present for this conversation?

    • Can you describe to me your relationship with the(se) provider(s)?

    • What do you think the purpose of this conversation was?

    • How did you feel about this conversation?

    • What were the things that were most helpful about this conversation? Tell me more about why you found [X] helpful.

    • What were the things that were not helpful about this conversation? Tell me more about why you found [X] unhelpful? What would have made the conversation more helpful to you?

    • If you could change anything about the conversation, what would you change?

    • In what ways, if at all, did this conversation affect decisions you made regarding your child’s medical care?

  3. (3)

    Now, I wonder if you have ever had a conversation about these religious or spiritual issues that was not particularly helpful to you or that could have gone better?

    Follow-up Probes:

    • Tell me more about that conversation. When did this conversation occur, specifically within the context of your child’s medical care?

    • What did you talk about?

    • Who initiated this conversation?

    • Who was present for this conversation?

    • Can you describe to me your relationship(s) with the(se) provider(s)?

    • What do you think the purpose of this conversation was?

    • How did you feel about this conversation?

    • What were the things that were most helpful about this conversation? Tell me more about why you found [X] helpful.

    • What were the things that were not helpful about this conversation? Tell me more about why you found [X] unhelpful? What would have made the conversation more helpful to you?

    • If you could change anything about the conversation, what would you change?

    • In what ways, if at all, did this conversation affect decisions you made regarding your child’s medical care?

  4. (4)

    Has any physician that participates in the medical care of your child ever specifically asked about your religious or spiritual beliefs and/or needs?

    If “Yes” Follow-up Probes:

    • Tell me more about that conversation.

    • Can you describe your relationship with the provider [e.g., primary care physician, palliative care physician, length of relationship]?

    • What do you think the purpose of this conversation was?

    • How did you feel about this conversation?

    • What were the things that were most helpful about this conversation? Tell me more about why you found [X] helpful.

    • What were the things that were not helpful about this conversation? Tell me more about why you found [X] unhelpful? What would have made the conversation more helpful to you?

    • If you could change anything about the experience of [X], what would you change?

    • In what ways, if at all, did this conversation affect decisions you made regarding your child’s medical care?

    If “No” Follow-up Probes:

    • Tell me how you feel about the possibility of your child’s physicians here in the hospital asking you about these sorts of religious or spiritual issues.

    • Tell me more about why you feel this way.

  5. (5)

    If no one has ever asked about your religious or spiritual needs/beliefs, what do you think about the possibility of a member of the medical team asking you about these topics?

    Follow-up Probes:

    • Tell me more about why you feel that way.

    • [if feels positive] Who would you want to ask about your religious or spiritual beliefs?

These questions ask about your feelings in general about religious and spiritual care in health care.

  1. (1)

    How do you feel, in general, about physicians asking questions about your religious or spiritual beliefs?

  2. (2)

    What do you think about physicians providing religious/spiritual comfort?

  3. (3)

    If you could give advice to physicians about how to talk about religious or spiritual issues with families of children with a serious illness, what would you say?

The next set of questions asks about your personal religious/spiritual beliefs throughout the course of your child’s illness and how your religious/spiritual beliefs were changed or reinforced by that experience.

  1. (1)

    Have your religious/spiritual beliefs changed since the diagnosis?

    If “Yes” Follow-up Probes:

    • Tell me more…

    • How have your beliefs or values changed?

    • What do you think contributed to this change?

    If “No” Follow-up Probes:

    • What has allowed your beliefs and or values to remain the same throughout your child’s illness?

The last section of the interview consists of a paper questionnaire.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

McNamara, L.C., Okoniewski, W., Maurer, S.H. et al. “Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine. J Relig Health 59, 2899–2917 (2020). https://doi.org/10.1007/s10943-020-00991-z

Download citation

Keywords

  • Pediatric palliative care
  • Spiritual care
  • Spiritual screening
  • Spiritual history
  • Pediatric caregivers