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
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pain and Symptom ManagementAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Deaths: final data for 2017.Natl Vital Stat Rep. 2019; 68: 1-77
- Infant mortality in the United States, 2017: data from the period linked birth/infant death file.Natl Vital Stat Rep. 2019; 68: 1-20
- Modes of death within a children’s hospital.Pediatrics. 2018; 142e20174182https://doi.org/10.1542/peds.2017-4182
- General paediatric inpatient deaths over a 15-year period.Paediatr Child Health. 2017; 22: 80-83
- Limiting and withdrawing life support in the PICU: for whom are these options discussed?.Pediatr Crit Care Med. 2016; 17: 110-120
- Committee on B: clinical report–forgoing medically provided nutrition and hydration in children.Pediatrics. 2009; 124: 813-822
American Nurses Association. Position statement: nutrition and hydration at the end of life. 2017. Available at: https://www.nursingworld.org/practice-policy/nursing-excellence/official-position-statements/id/nutrition-and-hydration-at-the-end-of-life/In. Accessed September 23, 2022
American academy of hospice and palliative medicine position statement: artificial nutrition and hydration near the end of life. Available at: www.aahpm.org/positions/anh. In.; 2013.
- Withdrawal of artificial nutrition and hydration: a survey of level IV neonatal intensive care units.J Perinatol. 2021; 41: 2372-2374
- Survey of neonatologists' attitudes toward limiting life-sustaining treatments in the neonatal intensive care unit.J Perinatol. 2012; 32: 886-892
- Religion and United States physicians' opinions and self-predicted practices concerning artificial nutrition and hydration.J Relig Health. 2013; 52: 1051-1065
- Pain and distress management in palliative neonatal care.Semin Fetal Neonatal Med. 2019; 24101008
- Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial.J Clin Oncol. 2013; 31: 111-118
- Withdrawal of artificial nutrition and hydration in the neonatal intensive care unit: parental perspectives.Arch Dis Child Fetal Neonatal Ed. 2013; 98: F21-F25
- Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.Pediatrics. 2013; 131: 861-869
- Withdrawal of artificial nutrition: influence of prior experience on the perception of caregivers.Am J Hosp Palliat Care. 2015; 32: 401-406
- Effects of dehydration on the dying patient.Rehabil Nurs. 1991; 16: 155-156
- The sensation of thirst in dying patients receiving i.v. hydration.J Palliat Care. 1995; 11: 17-21
- 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
- The dehydration question.Nursing. 1983; 13: 47-51
- Nurses' experiences with hospice patients who refuse food and fluids to hasten death.N Engl J Med. 2003; 349: 359-365
- Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia.Patient Educ Couns. 2006; 61: 372-380
- Dehydration in terminally ill patients. Perceptions of long-term care nurses.J Gerontol Nurs. 2002; 28 (quiz 48-39): 31-39
- 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
- Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors.Intensive Care Med. 2003; 29: 1489-1497
- Parent and clinician perspectives on challenging parent-clinician relationships in pediatric oncology.JAMA Netw Open. 2021; 4e2132138
Article info
Publication history
Published online: December 13, 2022
Accepted:
December 7,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
