An Uncomfortable Refusal
- An Uncomfortable Refusal
Baby Pam was born at twenty-three weeks gestational age while her parents were in the United States on educational visas. At ten months old, she remains in the neonatal intensive care unit due to the many complications of her premature birth. She suffers from severe lung disease, chronic respiratory failure, and several gastrointestinal maladies. She is fed mostly intravenously and will likely never eat unless she receives a small bowel transplant.
She is also on a ventilator, and as she has grown, her endotracheal tube has become inadequate and must be replaced with a larger one. Her medical team worries about changing the tube; after a past accidental extubation, an anesthesiologist was required to change it, and the procedure was only accomplished with great difficulty after several tries.
Because of this, the medical team asks an anesthesiologist to change the tube in an operating room with a surgeon standing by to perform a tracheostomy if Pam's airway becomes inaccessible during the procedure. But when they are presented with this plan, Baby Pam's parents reject it, saying that under no circumstances will they consent to a tracheostomy. They think the pain of Pam's therapy is already extensive; to add the additional burden of a tracheostomy is unacceptable because the resulting stoma would guarantee a lifetime of social rejection in their home country.
After reviewing Pam's prognosis and her parents' concerns about her poor quality of life, Pam's attending physician suggests a palliative approach to her care. However, her parents decline this option as well. They want continued aggressive care, including chest compressions, resuscitative medications, small bowel transplant, and the disputed endotracheal tube change. If the physicians encounter difficulty replacing the tube, Pam's parents want them to begin full resuscitative measures while they continue their attempts to secure the airway.
Baby Pam's parents care greatly for her. They understand her situation completely and are trying to make the best decisions they can within their cultural traditions. But the anesthesiologist will not agree to change Pam's endotracheal tube without having the option of ordering a tracheostomy if it becomes necessary, and transplant surgeons will not consider her for a small bowel transplant until there is a definitive plan to manage her respiration. The members of her medical team are trying to respect her parents' beliefs but feel they are burdening Pam with a poor and painful plan of care that they never intended to offer. How should they proceed?
- Commentary
Though this child's prognosis is poor, it is also uncertain, so the choice between a therapeutic and a palliative approach has appropriately been left to the family. Unfortunately, they understand this as two separate choices—one between tracheostomy and no tracheostomy, and a second between aggressive and palliative care. They have tried to choose consistently with their beliefs. The difficulty arises because they have chosen interventions that the medical team feels are discordant, have already harmed the child, and will continue to achieve a harmful balance.
When a patient or family expresses an outright demand for an inappropriate intervention, the medical team is correct not to provide it. When a family refuses a clearly necessary procedure for their child, the courts protect that child and allow the procedure to be done without parental consent. For this child, it would be unlikely for the courts to settle this case by ordering a tracheostomy and other lifesaving interventions when members of the medical team agree that palliative care would be appropriate. A court-ordered tracheostomy could also be harmful because there is some concern that the family might reject the child after this procedure. The courts have also historically refrained from prospectively ordering limitations of a child's care against the parents' wishes. A guardian ad litem, if appointed, would displace some of the burden from the medical team but would likely aggravate the conflict with the family.
While adults can refuse treatments that they do not want, they cannot demand care that their physicians feel is inappropriate. Capable parents and guardians of minors can also refuse care as long as their decisions are made in [End Page 15...
