How it feels to withdraw feeding from newborn babiesBMJ 2012; 345 doi: https://doi.org/10.1136/bmj.e7319 (Published 01 November 2012) Cite this as: BMJ 2012;345:e7319
The voice on the other end of the phone describes a newborn baby and a lengthy list of unexpected congenital anomalies. I have a growing sense of dread as I listen. The parents want “nothing done” because they feel that these anomalies are not consistent with a basic human experience. I know that once decisions are made, life support will be withdrawn. Assuming this baby survives, we will be unable to give feed, and the parents will not want us to use artificial means to do so.
Regrettably, my predictions are correct. I realise as I go to meet the parents that this will be the 10th child for whom I have cared after a decision has been made to forgo medically provided feeding. The mother fidgets in her chair, unable to make eye contact. She dabs at angry tears, stricken. In a soft voice the father begins to tell me about their life, their other children, and their dashed hopes for this child. He speculates that the list of proposed surgeries and treatments are unfair and will leave his baby facing a future too full of uncertainty.
Like other parents in this predicament, they are now plagued with a terrible type of wishful thinking that they could never have imagined. They wish for their child to die quickly once the feeding and fluids are stopped. They wish for pneumonia. They wish for no suffering. They wish for no visible changes to their precious baby. Their wishes, however, are not consistent with my experience. Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was 10 days.
Parents and care teams are unprepared for the sometimes severe changes that they will witness in the child’s physical appearance as severe dehydration ensues. I try to make these matters clear from the outset so that these parents do not make a decision that they will come to regret. I try to prepare them for the coming collective agony that we will undoubtedly share, regardless of their certainty about their decision. I know, as they cannot, the unique horror of witnessing a child become smaller and shrunken, as the only route out of a life that has become excruciating to the patient or to the parents who love their baby. I reflect on how sanitised this experience seems within the literature about making this decision. As a doctor, I struggle with the emotional burden of accompanying the patient and his or her family through this experience, as much as with the philosophical details of it.
Debate at the front lines of healthcare about the morality of taking this decision has remained heated, regardless of what ethical and legal guidelines have to offer.1 2 In our programme’s experience, no family has wanted to take their child home in this scenario, despite adequate community healthcare resources to do so. This family is no different. Therefore, we provide education to the entire care unit, from cleaners and clerks to administrators, nursing, and medical staff. It is imperative that they understand the ethical and legal sanctions for the decision that they will witness. We will go on to spend inordinate amounts of time with the baby’s care team. Providing forums for discussion and support of team members will extend from now until days after this tiny person has died. Not uniquely, the parents come to feel that the disaster of their situation is intolerable; they can no longer bear witness to the slow demise of their child. This increases the burden on the caregivers, without parents at the bedside to direct their child’s care. Despite involvement from the clinical ethics and spiritual care services, the vacuum of direction leads to divisions within the care team.
It is draining to be the most responsible physician. Everyone is looking to me to preside over and support this process. I am honest with the nurse when I say that it is getting more and more difficult to make my legs walk me on to this unit as the days elapse, that examining the baby is an indescribable mixture of compassion, revulsion, and pain.
Some say withdrawing medically provided hydration and nutrition is akin to withdrawing any other form of life support. Maybe, but that is not how it feels. In action, it seems like withdrawing a ventilator from a patient in an atmosphere of 0% oxygen. Meanwhile, vigorous discussions about whether others would undertake such a decision on behalf their own child occur over the coffee pot in the staff room. I sigh; we cannot know what decisions any of us would make, faced with the prospects that these parents confront. As I am embroiled in this situation once again, the one thing that helps me a little is the realisation that this process is necessarily difficult. It needs to be. To acknowledge that a child’s prospects are so dire, so limited, that we will not or cannot provide artificial nutrition is self selecting for the rarity of the situations in which parents and care teams would ever consider it.
Cite this as: BMJ 2012;345:e7319
Competing interests: None declared.
Provenance and peer review: Not commissioned; not externally peer reviewed.