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Quality of care at the end of life in children with cancer

Authors

  • John A Heath,

    Corresponding author
    1. Children's Cancer Centre, Royal Children's Hospital,
    2. Murdoch Children's Research Institute and
    3. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia and
      Dr John A. Heath, Royal Children's Hospital, Flemington Road, Parkville, Vic. 3052, Australia. Fax: +61 3 9345 6524; email: john.heath@rch.org.au
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  • Naomi E Clarke,

    1. Children's Cancer Centre, Royal Children's Hospital,
    2. Murdoch Children's Research Institute and
    3. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia and
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  • Maria McCarthy,

    1. Children's Cancer Centre, Royal Children's Hospital,
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  • Susan M Donath,

    1. Murdoch Children's Research Institute and
    2. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia and
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  • Vicki A Anderson,

    1. Murdoch Children's Research Institute and
    2. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia and
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  • Joanne Wolfe

    1. Dana-Farber Cancer Institute/Children's Hospital of Boston, Boston and
    2. Department of Pediatrics, Harvard University, Cambridge, Massachusetts, United States
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  • Grants: This study was supported by an NHMRC Palliative Care Grant; Dr JA Heath was a recipient of an NHMRC Health Professional Scholarship.

Dr John A. Heath, Royal Children's Hospital, Flemington Road, Parkville, Vic. 3052, Australia. Fax: +61 3 9345 6524; email: john.heath@rch.org.au

Abstract

Aim:  Current Australian guidelines for the provision of paediatric palliative care highlight the importance of services being focused on the needs of the child and family. We aimed to establish parents' level of satisfaction with the quality of care currently being provided to children dying of cancer.

Methods:  We interviewed 96 parents of children who died of cancer in Melbourne, Australia between 1996 and 2004 to ascertain how they rated the care provided to their child during the end-of-life period.

Results:  A majority of parents were satisfied with the care provided by their primary oncologist, local doctors, palliative care services and home-care nurses. Most parents felt that discussions about key medical and treatment decisions were appropriate and clearly understood. Parents were generally satisfied with the leadership roles undertaken in decision-making in the end-of-life period; however, parents who were not satisfied indicated that they would like additional involvement of their primary oncologist.

Conclusions:  Current approaches to end-of-life care in children with cancer appear to be satisfactory. The main focus should continue to be on open and honest communication.

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