Two faculty members in the Department of Communication – along with colleagues in the Department of Pediatrics – recently received a grant from the Sorenson Legacy Foundation. The grant will support the development of a series of videos to help parents decide whether their child should have a permanent tracheostomy for mechanical ventilation. "It's one of the hardest decisions a parent has to make," says Professor Jakob Jensen, a researcher on the project. "There's no good choice, so you have to pick the best bad option available."
A permanent tracheostomy for mechanical ventilation is an option for multiple conditions including spinal cord injury following trauma, chronic respiratory failure, and progressive neuromuscular disease. Informed consent is always obtained for the operative procedure, yet parents rarely are fully informed of the challenges and changes in family life that result from the invasive medical equipment required to sustain the life of their child. Reasonable parents may reach opposite conclusions about the best choice for their child, based on their values, beliefs, hopes and fears, some even deciding that a shorter life without the burden of technology is preferable to a longer life tethered to medical equipment.
Parents are confronted with this difficult choice every day, and it is hard for most to grasp the consequences of their decision (e.g., burden vs. benefit, quality of life issues, long-term care issues). According to the Kids Inpatient Database, approximately 5,000 permanent tracheostomies are performed on children (0 – 17 years of age) each year in the U.S. Children that receive permanent tracheostomies typically have critical airway obstructions or require prolonged mechanical ventilation as a result of injury or chronic illness. Children with a permanent tracheostomy require labor-intense medical and home care.
"We decided to pursue this project because the families needed more support. Physicians found it challenging to describe the home care situation, and families felt unprepared for the difficulties of long-term mechanical ventilation. Allowing decision makers to hear and see families managing permanent tracheostomy – both the good and the bad – seemed like a good way to improve the situation," Jensen noted.
The current study seeks to help children by providing support to their primary caregivers: parents and/or legal guardians faced with a difficult decision. The research team will interview parents that have been confronted with this decision, and select several to represent the pros/cons of permanent tracheostomy for mechanical ventilation. The series of videos will help parents and health care providers navigate the decision in a way that identifies the best course of action for each family and child. The families may decide that allowing their child to die peacefully is the best outcome. Alternatively, the family may choose permanent tracheostomy but with a deeper appreciation of the challenges of that course of action. Decision making research has shown that increasing awareness of the available options in advance of a critical decision is related to significant reductions in stress and improved life satisfaction. Thus, this research will improve the quality of life for both parents and children in a very tough situation.
The research team consists of Dr. Jakob D. Jensen (Ph.D., Communication), Dr. Mark Bergstrom (Ph.D., Communication), Dr. Joan Sheetz (M.D., Pediatrics), and Dr. Christopher G. Maloney (M.D., Ph.D., Pediatrics). Two graduate students are also working on the project: Mindy Krakow (Communication) and Miao Liu (Communication).