Re: How it feels to withdraw feeding from newborn babies
We found the anonymous personal account of how it feels to withdraw feeding from newborn babies with significant congenital anomalies both distressing and disturbing. Distressing, because we empathise with the emotional and psychological turmoil of all of those involved; disturbing, because of the nature of the decision and its practical implementation. With regard to the latter we accept that opinion will be divided as to whether in these circumstances the clinical provision of food and fluids is basic clinical care or whether it constitutes medical treatment and the consequences that flow from such dichotomous views.
In practical terms in our hospital, and we hope in many others in 2012, there is close symbiosis between neonatal intensive care and palliative care services. The extension of the latter into the community to include the hospice movement provides considerable choice over where and how end of life care will be delivered. We are also fortunate in having the facility to provide debriefs and emotional and psychological support for staff who have been involved in the care of such babies.
On our service practice , we see many babies with severe congenital anomalies which are not compatible with life. We attempt to provide humane care that meets their individual needs , and optimises their life experience and that of their family. We feel it is important to treat symptoms such as hunger and thirst appropriately to prevent suffering.. Most of the babies we care for will be able to feed sufficiently to prevent hunger and dehydration, although they may need feeding ‘little and often’ or with specialised teats so for them at least administration of food and fluids forms part of symptom care
A few babies will not be able to feed orally and for them feeding may require clinical intervention of varying invasiveness and hence be considered as medical treatment . For these we should consider nasogastric feeding – not with the aim of prolonging life, but to prevent suffering through hunger. Even for those who cannot tolerate any form of enteral feeding, intravenous fluids should not be automatically excluded, even though it may be considered ethical to do so..
In our experience it is very unusual, for families to choose to remain in hospital. Most will take their baby home or to a children’s hospice. Many survive longer than expected and we are not aware of any family who has not valued this precious time with their baby.
Withholding or withdrawing life sustaining treatment (LST), including clinically administered nutrition and hydration (CANH) with the intention of causing death is unlawful, as are acts that are intended to shorten life. However CANH may be withheld or withdrawn in the same circumstances and for the same reasons as other forms of LST. Although withholding or withdrawing of CANH may be morally permissible it is not obligatory.
Where administration of food and fluids does not require clinical assistance their withdrawal can only be considered if it would be harmful to the baby to continue them. In our experience this is rare and hence we would hope that the situation which the author so graphically describes would be rare in 21st century paediatric palliative care