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

  • Alexandra Lazzara
    Department of Pediatrics (A.L., R.D.B.), Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
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  • Renee D. Boss
    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.
    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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      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.


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


      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.


      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%).


      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.

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        • Kochanek KD
        • Murphy SL
        • Xu J
        • et al.
        Deaths: final data for 2017.
        Natl Vital Stat Rep. 2019; 68: 1-77
        • Ely DM
        • Driscoll AK
        Infant mortality in the United States, 2017: data from the period linked birth/infant death file.
        Natl Vital Stat Rep. 2019; 68: 1-20
        • Trowbridge A
        • Walter JK
        • McConathey E
        • et al.
        Modes of death within a children’s hospital.
        Pediatrics. 2018; 142e20174182
        • Roth A
        • Rapoport A
        • Widger K
        • et al.
        General paediatric inpatient deaths over a 15-year period.
        Paediatr Child Health. 2017; 22: 80-83
        • Keele L
        • Meert KL
        • Berg RA
        • et al.
        Limiting and withdrawing life support in the PICU: for whom are these options discussed?.
        Pediatr Crit Care Med. 2016; 17: 110-120
        • Diekema DS
        • Botkin JR
        Committee on B: clinical report–forgoing medically provided nutrition and hydration in children.
        Pediatrics. 2009; 124: 813-822
      1. American Nurses Association. Position statement: nutrition and hydration at the end of life. 2017. Available at: Accessed September 23, 2022

      2. American academy of hospice and palliative medicine position statement: artificial nutrition and hydration near the end of life. Available at: In.; 2013.

        • Saoud R
        • Locke D
        • Fry JT
        • et al.
        Withdrawal of artificial nutrition and hydration: a survey of level IV neonatal intensive care units.
        J Perinatol. 2021; 41: 2372-2374
        • Feltman DM
        • Du H
        • Leuthner SR
        Survey of neonatologists' attitudes toward limiting life-sustaining treatments in the neonatal intensive care unit.
        J Perinatol. 2012; 32: 886-892
        • Wolenberg KM
        • Yoon JD
        • Rasinski KA
        • Curlin FA
        Religion and United States physicians' opinions and self-predicted practices concerning artificial nutrition and hydration.
        J Relig Health. 2013; 52: 1051-1065
        • Garten L
        • Buhrer C
        Pain and distress management in palliative neonatal care.
        Semin Fetal Neonatal Med. 2019; 24101008
        • Bruera E
        • Hui D
        • Dalal S
        • et al.
        Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial.
        J Clin Oncol. 2013; 31: 111-118
        • Hellmann J
        • Williams C
        • Ives-Baine L
        • Shah PS
        Withdrawal of artificial nutrition and hydration in the neonatal intensive care unit: parental perspectives.
        Arch Dis Child Fetal Neonatal Ed. 2013; 98: F21-F25
        • Rapoport A
        • Shaheed J
        • Newman C
        • et al.
        Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.
        Pediatrics. 2013; 131: 861-869
        • Leheup BF
        • Piot E
        • Goetz C
        • et al.
        Withdrawal of artificial nutrition: influence of prior experience on the perception of caregivers.
        Am J Hosp Palliat Care. 2015; 32: 401-406
        • Baerg KL
        Effects of dehydration on the dying patient.
        Rehabil Nurs. 1991; 16: 155-156
        • Musgrave CF
        • Bartal N
        • Opstad J
        The sensation of thirst in dying patients receiving i.v. hydration.
        J Palliat Care. 1995; 11: 17-21
        • Holden CM
        Nutrition and hydration in the terminally ill cancer patient: the nurse's role in helping patients and families cope.
        Hosp J. 1993; 9: 15-35
        • Zerwekh JV
        The dehydration question.
        Nursing. 1983; 13: 47-51
        • Ganzini L
        • Goy ER
        • Miller LL
        • et al.
        Nurses' experiences with hospice patients who refuse food and fluids to hasten death.
        N Engl J Med. 2003; 349: 359-365
        • Rurup ML
        • Onwuteaka-Philipsen BD
        • Pasman HR
        • et al.
        Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia.
        Patient Educ Couns. 2006; 61: 372-380
        • Critchlow J
        • Bauer-Wu SM
        Dehydration in terminally ill patients. Perceptions of long-term care nurses.
        J Gerontol Nurs. 2002; 28 (quiz 48-39): 31-39
        • Kitzinger J
        • Kitzinger C
        Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: a qualitative study of family experience.
        Palliat Med. 2018; 32: 1180-1188
        • Studdert DM
        • Mello MM
        • Burns JP
        • et al.
        Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors.
        Intensive Care Med. 2003; 29: 1489-1497
        • Mack JW
        • Jaung T
        • Uno H
        • Brackett J
        Parent and clinician perspectives on challenging parent-clinician relationships in pediatric oncology.
        JAMA Netw Open. 2021; 4e2132138