One of the most overwhelming choices presented to parents and family caregivers relates to the decision as to whether their child should have a tracheostomy.
In most instances, tracheostomy is probably not presented as a true “choice,” but as an operation that “needs to be done” in order for a child to survive, and for which parents and caregivers are then asked to give permission (aka, “consent”). This happens in two common situations: (1) when a child is born with a malformation of the chin, face or upper airway that does not permit air exchange, and (2) when it seems highly likely to health care providers that a child will not be able to be weaned from a ventilator any time in the near future, and the child’s survival with a tracheostomy is preferred to removal from the ventilator and foreseeable death.
In other instances, a tracheostomy is proposed as a means to permit long term mechanical ventilation in the home, say, following a series of hospitalizations for pneumonia and respiratory failure in a child with lung function that is severely impaired by muscle weakness, chest wall deformity, scoliosis and/or progressive disease of the lungs themselves following numerous infections. Mechanical ventilation can then be provided by connecting the ventilator tubing directly to the tracheostomy. The child no longer needs to be sedated, and mobility is possible. By permitting access directly to the trachea, creation of a tracheostomy also allows caregivers to suction the more effectively than is possible without one.
In all these instances, a tracheostomy is recommended with the intent of lengthening the child’s life. In many cases, assistance by mechanical ventilation will improve quality of life as well. When a tracheostomy is expected to be temporary, say, for a period of months to years, the benefits will most likely be felt by families and health professionals to outweigh the burdens. In the first case above, if an operation can be performed on the upper airway that permits the child to breathe through the mouth or nose, the tracheostomy can be removed (a process called, “decanulation”). Mechanical ventilation via tracheostomy for a child with severe lung disease following neonatal intensive care permits a period of healing and lung growth over time that often allows for weaning from the ventilator and eventual decanulation.
When the underlying conditions leading to considerations of tracheostomy are life limiting themselves, or are degenerative and irreversible, parents and caregivers, and some children, may question whether a living longer with a tracheostomy is preferable to living less long without one. Decisions about tracheostomy, like all those that are part of advance care planning, are best made based on the balance of benefits and burdens, a review of what alternatives exist, and how these choices help promote the goals of care. Like all decision-making in these contexts, discussions around them should be longitudinal, repetitive, inclusive and maximally supportive to parents, family caregivers and children.
Dr. Okun is Medical Director of New Alternatives for Children, a child welfare agency serving children with special health care needs and their families from New York City. He is board certified in Pediatrics, Developmental-Behavioral Pediatrics and Hospice and Palliative Medicine. He is a Fellow of the American Academy of Pediatrics and the American Academy of Hospice and Palliative Medicine and involved in committee work with those organizations. He is the recipient of numerous teaching awards. He has presented internationally and written about care for children with special health care needs, child maltreatment and a range of issues in general pediatrics, bioethics, and palliative and end of life care and bereavement.
The views expressed in this column are solely those of Dr. Okun and are not intended to represent those of any agency or organization with which he is employed or otherwise affiliated.