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Observation of Child Experience During Discontinuing of Medically Provided Nutrition and Hydration

  • Alexandra Lazzara
    Affiliations
    Department of Pediatrics (A.L., R.D.B.), Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
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  • Renee D. Boss
    Correspondence
    Address correspondence to: Renee Boss, MD, Berman Institute of Bioethics, Johns Hopkins School of Medicine, 200 N. Wolfe Street, Rm. 2019, Baltimore, MD 21287, USA.
    Affiliations
    Department of Pediatrics (A.L., R.D.B.), Johns Hopkins University School of Medicine, Baltimore, Maryland, USA

    Johns Hopkins Berman Institute of Bioethics (R.D.B.), Baltimore, Maryland, USA
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      Abstract

      Context

      Ethical and professional guidelines support withholding/discontinuing medically provided nutrition and hydration (MPNH) for children in specific scenarios yet literature shows many providers do not support this practice. One reason clinicians continue MPNH is worry about child suffering.

      Objectives

      This study was designed to assess clinician observations of infant/child experience following withholding/discontinuing MPNH.

      Methods

      This study is a national survey of clinicians who had personally medically-managed an infant/child during the process of withholding/discontinuing MPNH. Survey disseminated via Twitter, email, and Facebook. Descriptive and content analyses were performed.

      Results

      Responses from 195 clinicians represented experiences with 900+ children, with over half of those experiences occurring within the prior year. Palliative care was consulted in 76% of cases. Most clinicians reported that in their patients, comfort (80/142, 56%) and peacefulness (89/143, 62%) increased during withholding/discontinuing MPNH, as did dry lips/mouth (109/143, 76%). Most observed decreased work of breathing (58/142, 63%) and respiratory secretions (90/142, 63%). The perceived need for pain medication typically remained unchanged (54/142, 38%). When asked to describe the dying process during withholding/ discontinuing MPNH, the most common response was “peaceful.” Clinicians also observed increasing levels of parent relief (78/137, 57%), peace (77/137, 56%), as well as anxiety (74/137, 54%).

      Conclusion

      Respiratory, gastrointestinal symptoms, signs of peacefulness, and comfort improved for most infants and children during withholding/withdrawing MPNH. Aside from dry lips/mouth, fewer than 10% of children were perceived to have increased symptom distress. This study's findings are consistent with adult data and failed to detect a compelling reason to forgo withholding/discontinuing MPNH solely due to concern about child comfort.

      Key Words

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