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Parent and child perspectives on physician communication in pediatric palliative care

Published online by Cambridge University Press:  25 October 2007

Jennifer L. Hsiao ,
Elana E. Evan  and
Lonnie K. Zeltzer
Jennifer L. Hsiao
Affiliation:
Department of Pediatrics, Pediatric Pain Program, UCLA Mattel Children's Hospital, Los Angeles, California, USA
Elana E. Evan*
Affiliation:
Department of Pediatrics, Pediatric Pain Program, UCLA Mattel Children's Hospital, Los Angeles, California, USA
Lonnie K. Zeltzer
Affiliation:
Department of Pediatrics, Pediatric Pain Program, UCLA Mattel Children's Hospital, Los Angeles, California, USA
*
Corresponding author: Elana E. Evan, UCLA Pediatric Pain Program, 10833 Le Conte Ave, MDCC22-464, Los Angeles, CA 90024, USA. E-mail: [email protected]
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Abstract

Objective:

Despite growing recognition of the importance of communication with children with life-limiting illnesses and their families, there has been limited research that includes the child's perspective. The purpose of the current study was to identify the aspects of physician communication that children with life-limiting illnesses and their parents perceived to be facilitative or obstructive in pediatric palliative care.

Methods:

This qualitative study reports on the first 20 parent and child pairs of pediatric oncology and cardiology patients (mean age 14.25 years, range 9-21 years) with a poor prognosis (physician reported likely <20% chance of survival beyond 3 years) from two children's hospitals and one pediatric hospice in Los Angeles, California. Perspectives on physician communication were elicited from children's and parents' individual narratives, recorded, coded, and analyzed using qualitative grounded theory methodology.

Results:

Both children and parents identified five domains of physician communication deemed to be highly salient and influential in quality of care. These included relationship building, demonstration of effort and competence, information exchange, availability, and appropriate level of child and parent involvement. Parents identified coordination of care as another important communication domain. The characteristics of physicians that were deemed most harmful to satisfying communication included having a disrespectful or arrogant attitude, not establishing a relationship with the family, breaking bad news in an insensitive manner, withholding information from parents and losing their trust, and changing a treatment course without preparing the patient and family.

Significance of results:

The six positive communication domains are areas for clinicians to recognize and monitor in communicating with children and families in the pediatric palliative care setting. Knowledge of the qualities of communication that are satisfying to and valued by children and their parents have the potential to lead to more effective communication around the difficult decisions faced by physicians, parents, and children with life-threatening conditions.

Keywords

Pediatric palliative careCommunicationPatient preferencesLife-limiting illnessPhysician qualities
Type
Research Article
Information
Palliative & Supportive Care , Volume 5 , Issue 4 , December 2007 , pp. 355 - 365
Copyright
Copyright © Cambridge University Press 2007

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References

REFERENCES

American Academy of Pediatrics. (2000). Palliative care for children. Pediatrics, 106, 351–357.CrossRefGoogle Scholar
Auerbach, C.F. & Silverstein, L.B. (2003). Qualitative data: An introduction to coding and analyzing data in qualitative research. New York: New York University Press.Google Scholar
Back, A.L., Arnold, R.M., Baile, W.F., et al. (2005). Approaching difficult communication tasks in oncology. CA: A Cancer Journal for Clinicians, 55, 164–177.Google ScholarPubMed
Boyle, D.K., Miller, P.A., & Forbes-Thompson, S.A. (2005). Communication and end-of-life care in the intensive care unit: Patient, family, and clinician outcomes. Critical Care Nursing Quarterly, 28, 302–316.CrossRefGoogle ScholarPubMed
Browning, D. (2002). To show our humanness—Relational and communicative competence in pediatric palliative care. Bioethics Forum, 18, 23–28.Google ScholarPubMed
Browning, D.M. & Solomon, M.Z. (2005). The initiative for pediatric palliative care: An interdisciplinary educational approach for healthcare professionals. Journal of Pediatric Nursing, 20, 326–334.CrossRefGoogle Scholar
Buckman, R. (2001). Communication skills in palliative care: A practical guide. Neurologic Clinics, 19, 989–1004.CrossRefGoogle ScholarPubMed
Chochinov, H.M. (2002). Dignity-conserving care—A new model for palliative care: Helping the patient feel valued. JAMA, 287, 2253–2260.CrossRefGoogle ScholarPubMed
Contro, N., Larson, J., Scofield, S., et al. (2002). Family perspectives on the quality of pediatric palliative care. Archives of Pediatric & Adolescent Medicine, 56, 14–19.CrossRefGoogle Scholar
Curtis, J.R., Wenrich, M.D., Carline, J.D., et al. (2001). Understanding physicians' skills at providing end-of-life care perspectives of patients, families, and health care workers. Journal of General Internal Medicine, 116, 41–49.Google Scholar
Davies, B. & Connaughty, S. (2002). Pediatric end-of-life care: Lessons learned from parents. The Journal of Nursing Administration, 32, 5–6.CrossRefGoogle ScholarPubMed
Edwards, P. (2005). An overview of the end-of-life discussion. International Journal of Palliative Nursing, 11, 21–27.CrossRefGoogle ScholarPubMed
Ellis, R. & Leventhal, B. (1993). Information needs and decision-making preferences of children with cancer. Psycho-Oncology, 2, 277–284.CrossRefGoogle Scholar
Fallowfield, L., Jenkins, V., Farewell, V., et al. (2003). Enduring impact of communication skills training: Results of a 12-month follow-up. British Journal of Cancer, 89, 1445–1449.CrossRefGoogle ScholarPubMed
Gubrium, J.F. & Holstein, J.A. (eds.). (2002). Handbook of Interview Research. Thousand Oaks, CA: Sage.Google Scholar
Heller, K.S. & Solomon, M.Z. (2005). Continuity of care and caring: What matters to parents of children with life-threatening conditions. Journal of Pediatric Nursing, 20, 335–346.CrossRefGoogle ScholarPubMed
Hilden, J.M., Emanuel, E.J., Fairclough, D.L., et al. (2001). Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. Journal of Clinical Oncology, 19, 205–212.CrossRefGoogle ScholarPubMed
Hinds, P.S., Drew, D, Oakes, L.L., et al. (2005). End-of-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology, 23, 9146–9154.CrossRefGoogle ScholarPubMed
Hinds, P.S., Oakes, L., Quargnenti, A., et al. (2000). An international feasibility study of parental decision making in pediatric oncology. Oncology Nursing Forum, 27, 1233–1243.Google ScholarPubMed
Howells, R.J., Davies, H.A., & Silverman, J.D. (2006). Teaching and learning consultation skills for paediatric practice. Archives of Disease in Childhood, 91, 367–370.CrossRefGoogle ScholarPubMed
Hoyert, D.L., Mathews, T.J., Menacker, F., et al. (2006). Annual summary of vital statistics: 2004. Pediatrics, 117, 168–183.CrossRefGoogle ScholarPubMed
Huddleston, D. & Alexander, R. (1999). Communicating in end-of-life care. Caring, 18, 16–18, 20.Google ScholarPubMed
James, L. & Johnson, B. (1997). The needs of parents of pediatric oncology patients during the palliative care phase. Journal of Pediatric Oncology Nursing, 14, 83–95.CrossRefGoogle ScholarPubMed
Kirschbaum, M.S. (1990). Needs of parents of critically ill children. Dimensions of Critical Care Nursing, 9, 344–352.CrossRefGoogle ScholarPubMed
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., et al. (2004). Talking about death with children who have severe malignant disease. New England Journal of Medicine, 351, 1175–1186.CrossRefGoogle ScholarPubMed
Mack, J.W., Hilden, J.M., Watterson, J., et al. (2005). Parent and physician perspectives on quality of care at the end of life in children with cancer. Journal of Clinical Oncology, 23, 9155–9161.CrossRefGoogle ScholarPubMed
Makoul, G. (2003). The interplay between education and research about patient-provider communication. Patient Education and Counseling, 50, 79–84.CrossRefGoogle ScholarPubMed
Maxwell, J.A. (1992). Understanding and validity in qualitative research. Harvard Educational Review, 62, 279–300.CrossRefGoogle Scholar
Meyer, E.C., Burns, J.P., Griffith, J.L., et al. (2002). Parental perspectives on end-of-life care in the pediatric intensive care unit. Critical Care Medicine, 30, 226–231.CrossRefGoogle ScholarPubMed
Meyer, E.C., Ritholz, M.D., Burns, J.P., et al. (2006). Improving the quality of end-of-life care in the pediatric intensive care unit: Parents' priorities and recommendations. Pediatrics, 117, 649–657.CrossRefGoogle ScholarPubMed
Miles, M.B. & Huberman, A.M. (1994). Qualitative data analysis (2nd ed.) Thousand Oaks, CA: Sage.Google Scholar
Nova, C., Vegni, E., & Moja, E.A. (2005). The physician-patient-parent communication: A qualitative perspective on the child's contribution. Patient Education and Counseling, 58, 327–333.CrossRefGoogle ScholarPubMed
Patton, M.Q. (2002). Qualitative evaluation and research methods (3rd ed.) Thousand Oaks, CA: Sage.Google Scholar
Sahler, O.J., Frager, G., Levetown, M., et al. (2000). Medical education about end-of-life care in the pediatric setting: Principles, challenges, and opportunities. Pediatrics, 105, 575–584.CrossRefGoogle ScholarPubMed
Solomon, M.Z. & Browning, D. (2005). Pediatric palliative care: Relationships matter and so does pain control. Journal of Clinical Oncology, 23, 9055–9057.CrossRefGoogle ScholarPubMed
Stivers, T. (2001). Negotiating who presents the problem: Next speaker selection in pediatric encounters. The Journal of Communication, 51, 252–282.CrossRefGoogle Scholar
Strauss, A.L., & Corbin, J.M. (1998). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory (2nd ed.) Thousand Oaks, CA: Sage.Google Scholar
Studdert, D.M., Burns, J.P., Mello, M.M., et al. (2003). Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics, 112, 553–558.CrossRefGoogle ScholarPubMed
Tates, K., Elbers, E., Meeuwesen, L., et al. (2002 a). Doctor-parent-child relationships: A ‘pas de trois.’ Patient Education and Counseling, 48, 5–14.CrossRefGoogle ScholarPubMed
Tates, K. & Meeuwesen, L. (2001). Doctor-parent-child communication. A (re)view of the literature. Social Science & Medicine, 52, 839–851.CrossRefGoogle ScholarPubMed
Tates, K., Meeuwesen, L., Elbers, E., et al. (2002 b). ‘I've come for his throat’: Roles and identities in doctor-parent-child communication. Child: Care, Health and Development, 28, 109–116.CrossRefGoogle ScholarPubMed
van Dulmen, A.M. (1998). Children's contributions to pediatric outpatient encounters. Pediatrics, 102, 563–568.CrossRefGoogle ScholarPubMed
van Dulmen, A.M. & Holl, R.A. (2000). Effects of continuing pediatric education interpersonal communication skills. European Journal of Pediatrics, 159(7), 489–495.CrossRefGoogle ScholarPubMed
Vickers, J.L. & Carlisle, C. (2000). Choices and control: Parental experiences in pediatric terminal home care. Journal of Pediatric Oncology Nursing, 17, 12–21.CrossRefGoogle ScholarPubMed
von Guten, C.F., Ferris, F., & Emanuel, L. (2000). Ensuring competency in end-of-life care: Communication and relational skills. JAMA, 284, 3051–3057.CrossRefGoogle Scholar
Wassmer, E., Minnaar, G., Abdel Aal, N., et al. (2004). How do paediatricians communicate with children and parents? Acta Paediatrica, 93, 1501–1506.CrossRefGoogle ScholarPubMed
Weiss, R. (1994). Learning from Strangers: The Art and Method of Qualitative Interview Studies. New York: Free Press.Google Scholar
Wolfe, J., Klar, N., Grier, H.E., et al. (2000). Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. JAMA, 284, 2469–2475.CrossRefGoogle ScholarPubMed
World Health Organization. Definition of palliative care. Available at: www.who.int/cancer/palliative/definition/en/. Accessed February 19, 2007.Google Scholar
Young, B., Dixon-Woods, M., Windridge, K.C., et al. (2003). Managing communication with young people who have a potentially life threatening chronic illness: Qualitative study of patients and parents. British Medical Journal, 326, 305.CrossRefGoogle ScholarPubMed