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Communication with Children with Cancer and Their Families Throughout the Illness Journey and at the End of Life

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Palliative Care in Pediatric Oncology

Part of the book series: Pediatric Oncology ((PEDIATRICO))

Abstract

Skillful communication is imperative to the practice of pediatric oncology and pediatric palliative care. Clear, empathic, and individualized communication facilitates trust and relationship building between clinicians, patients, and families, encourages shared decision-making, and affords clinicians a valuable opportunity to integrate goals of care and quality of life into the holistic management plan. In the context of incurable illness, conversation also may serve as a therapeutic intervention itself, enabling clinicians to reframe hope, alleviate suffering, and mitigate complicated bereavement. Moreover, good communication promotes collaborative interdisciplinary care coordination and continuity, enabling the provision of services, resources, and support across various care locations and throughout the illness trajectory. The importance of providing excellent communication to the families of children with high-risk cancer and other life-threatening illnesses has been emphasized by the American Academy of Pediatrics, the Institute of Medicine, multiple national oncology societies, and experts in pediatric oncology and palliative care. This chapter discusses the benefits of providing effective communication at the intersection of pediatric oncology and palliative care and reviews strategies for achieving high-quality communication between clinicians, patients, and families across a spectrum of challenging clinical scenarios. This chapter also highlights common barriers to effective communication and offers strategies to overcome potential roadblocks, incorporating recommendations from a diverse interdisciplinary team of pediatric palliative care experts.

“Speak clearly, if you speak at all; carve every word before you let it fall.”

Oliver Wendall Holmes

“The way you tell the truth to families makes a huge difference…if you know the person that’s coming in there and they’re telling the truth, as hard as it is, but you know they care about you and they love your child, it’s okay. As hard as it is, it’s okay and it makes all the difference.”

Bereaved parent

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Authors and Affiliations

  1. Department of Oncology, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Mail Stop 260, Memphis, TN, 38105-3678, USA

    Erica C. Kaye M.D.

  2. Department of Oncology, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Erica C. Kaye M.D., Liza Johnson, Deena Levine & Justin N. Baker

  3. Division of Quality of Life and Palliative Care, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Erica C. Kaye M.D., Liza Johnson, Deena Levine & Justin N. Baker

  4. Division of Pediatric Palliative Care, Boston Childrens Hospital, Boston, MA, USA

    Jennifer M. Snaman

  5. Department of Psychosocial Oncology, Dana-Farber Cancer Institute, Boston, MA, USA

    Jennifer M. Snaman

  6. Spiritual Care Services, Patient Care Services, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Brent Powell

  7. Child Life Program, Patient Care Services, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Amy Love & Jennifer Smith

  8. Department of Psychology, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Jennifer H. Ehrentraut

  9. Threads of Care Program, Division of Hospice and Palliative Care, Le Bonheur Children’s Hospital, University of Tennessee Health Science Center, Memphis, TN, USA

    Joanna Lyman & Melody Cunningham

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  1. Erica C. Kaye M.D.
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Correspondence to Erica C. Kaye M.D. .

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Editors and Affiliations

  1. Department of Psychosocial Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA

    Joanne Wolfe

  2. School of Social Work, The University of Texas, Austin, Texas, USA

    Barbara L. Jones

  3. Department of Caring Sciences, Palliative Research Centre, Stockholm, Sweden

    Ulrika Kreicbergs

  4. Hospital san Gerardo, University of Milano, Monza, Italy

    Momcilo Jankovic

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Kaye, E.C. et al. (2018). Communication with Children with Cancer and Their Families Throughout the Illness Journey and at the End of Life. In: Wolfe, J., Jones, B., Kreicbergs, U., Jankovic, M. (eds) Palliative Care in Pediatric Oncology. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-319-61391-8_4

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