The following is a summary of the “Observation of Child Experience During Discontinuing of Medically Provided Nutrition and Hydration,” published in the December 2022 issue of Pain and Symptom Management by MD, et al.
Despite the fact that many providers do not agree with the practise, literature shows that ethical and professional guidelines support withholding/discontinuing medically provided nutrition and hydration (MPNH) for children in specific scenarios. Worry about causing harm to a child is a driving factor in the continuation of MPNH. The purpose of this research was to evaluate clinician reports of infant/child experience after MPNH was withheld or stopped.
The methods include a nationwide survey of doctors who have personally cared for an infant or child while MPNH was being withheld or stopped. Distributed survey via social media and microblogging platforms. Analysis was done both descriptively and content-wise.
A total of 195 clinicians responded, representing exposure to at least 900 children over the course of their careers, with more than 1/2 of that exposure occurring within the past year. About 76% percent of patients sought out palliative care. Withholding or stopping MPNH was associated with an increase in patients’ feelings of comfort (80/142, 56%) and peacefulness (89/143, 62%), as well as dry lips/mouth (109/143, 76%), according to the majority of clinicians. Reduced respiratory effort and mucus production were reported by the majority (n = 142; 63%). Despite some variation, the majority of people (54/142, 38%) report continuing to need some level of pain relief.
Most people who were asked how they felt about dying while MPNH was being withheld or stopped used the word “peaceful” to describe their experience. Increases in parent calmness (77/137, 56%), relief (57%), and anxiety (54%), as reported by clinicians. Withholding or withdrawing MPNH resulted in better respiratory, gastrointestinal, signs of peace and comfort for most infants and children. Among children, less than 10% were deemed to be experiencing increased symptom distress; this was not due to dry lips/mouth alone. The results of this study are in line with those found in studies of adults, and they failed to identify a compelling reason to forego withholding/discontinuing MPNH solely due to concern about child comfort.