Withdrawing life support from PVS patients: Do ethics change for age?
Case center of debate over guardian’s perceived haste to withdraw support
The case of an 11-year-old Massachusetts girl, Haleigh Poutre, who suffered severe brain trauma last year as the result of abuse and is now in the custody of the state, has opened up discussion on withdrawing life support in pediatric patients who are diagnosed as being in a persistent vegetative state (PVS).
However, one pediatrician says the debate is not so much among clinicians, but among policy-makers.
"The only discussion and debate is among politicians," says Robert Nelson, MD, PhD, associate professor, anesthesiology and critical care at the University of Pennsylvania, who practices at The Children’s Hospital of Philadelphia. "I don’t think there’s a lot of professional disagreement [on the criteria for PVS and withdrawal of life support]. The point comes down to whether you think it’s reasonable."
Though the emotional impact often is different when deciding to end life support for a child vs. an adult, according to Steven Leuthner, MD, MA, assistant professor of pediatrics and bioethics at the Medical College of Wisconsin Center for the Study of Bioethics, "from an ethical perspective, I don’t know that the decisions should be very different."
"The main difference between an adult and a child is that the adult might have had an opportunity to say what they would want to do if they were in the situation of PVS, and unfortunately with children they don’t have the capability to say what they would want to do," says Leuthner. "But if you have an adult who has never expressed their wishes, that’s no different from a child, and then you turn in both cases to whatever surrogate decision maker who is there."
Massachusetts case turns on PVS and guardianship
Poutre was hospitalized Sept. 11, 2005, with bruises, broken teeth, and a sheared brain stem. Authorities charged her adoptive mother and stepfather with assault, alleging the child was beaten with a baseball bat. She was placed in the custody of the Massachusetts Department of Social Services (DSS), and several days after her hospitalization, doctors told her custodian that she was in a vegetative state and had no hope of recovery, a spokesman for DSS said at the time.
On Sept. 17, DSS stated in court documents, the child’s intracranial pressure increased, and she was diagnosed as having a stroke of the entire right side and most of the left side of her brain."
DSS asked a court for permission to remove her feeding tube and ventilator on Sept. 19, according to a redacted brief made public by the Supreme Judicial Court. The agency drew fire from critics who said it acted too swiftly; DSS issued statements defending its action, saying the department wanted to have all options available so that it could act in the child’s best interest as her condition demanded.
On Oct. 5, a juvenile court ruled life support could be withdrawn. The girl’s stepfather, who could face murder charges if the child died, appealed the decision to the state supreme court, which ruled in January that he could not have a say in her medical care due to his conflict of interest, and upheld the decision to allow withdrawal of life support. The child’s adoptive mother committed suicide after being charged in the abuse case.
The day after the state supreme court ruled that the agency could withdraw life support, DSS announced the girl was breathing on her own and may have shown signs of regaining responsiveness. She was moved to a rehabilitation hospital in late January for additional evaluation.
Medical experts have long said that eye and body movement are not enough to determine whether a person is or is not in PVS. The Terri Schiavo case famously showed millions of lay people and lawmakers a woman who exhibited some body movement and who, though blind, was believed by family members to follow their movements with her eyes.
After being weaned from her ventilator, Poutre reportedly moved her eyes and hands — in the presence of DSS Commissioner Harry Spence — but doctors said those could be random, reflexive motions. Spence, in early February, said he would postpone removal of the child’s artificial nutrition and hydration (ANH) until her condition was more conclusively evaluated.
Nelson says that in cases such as Poutre’s, details are crucial.
"Is she in PVS or is she neurologically devastated? In situations where patients wake up, no one claims they were in PVS — they were neurologically devastated," he explains. "If a neurologist I trusted told me a [pediatric patient] was in PVS, I would treat that child differently than if he or she were neurologically devastated. The details are important."
Nelson said while a child in PVS can be diagnosed within a month, if doubt exists, waiting is "prudent."
The mechanism of injury is important to any decision to wait, as well, Nelson and Leuthner both say. A traumatic brain injury may leave room for some degree of recovery; injury due to asphyxiation does not yield such outcomes.
"Traumatic brain injury [outcome] can be hard to predict, but I generally tell parents a month is long enough [to tell]," Nelson says. "With asphyxial injury, you can tell in a week."
Then, he says, parents and physicians waiting to make treatment decisions have to ask what they are waiting for.
"Why are you waiting? What outcome are you waiting for?" he says.
Medical experts who have weighed in on the Poutre case have acknowledged that it is more difficult to make such calls when the patient is a child. While some have said regardless of the patient’s age, the decisions should be based on the same criteria, at least one doctor publicly stated she would wait a year before removing life support from a child.
The American Medical Association code of ethics addresses the initiation and withdrawal of ANH without making a distinction based on age: "Treatments such as mechanical ventilation and artificial nutrition and hydration should be provided only with appropriate authorization from a patient, a surrogate, or a court. Once initiated, life-sustaining treatments may be ethically withdrawn upon request of the patient, or a surrogate or court acting on the patient’s behalf."
Conflicts of interest cloud decision making
In the case of Haleigh Poutre, authorities and the court determined that her abuser, while her adoptive stepfather, had too great a conflict of interest to determine her care. If she lived, even on life support, he could not be charged with her death.
Lacking other family guardians, Poutre was placed in the custody of the state. Though there is a long, well-established legal tradition of the state making life or death medical decisions for children in state custody, critics point to a spectrum of potential conflicts in the Poutre situation — because DSS has acknowledged missing earlier signs that the child was being abused by her parents, would the agency be biased toward keeping her alive? Would the cost of keeping her alive prejudice the state to seek to end her life? The governor of the state has called for an investigation into the case; since DSS reports to the governor, is it still an independent guardian with only the child’s best interest at heart?
The American Academy of Pediatrics (AAP) Committee on Child Abuse and Neglect and Committee on Bioethics issued in 2001 a position paper entitled "Forgoing life-sustaining medical treatment in abused children," (Pediatrics 2000; 106:1,151-1,153), in which it advises: "A guardian ad litem for medical decision making should be appointed in all cases of child abuse requiring [life-sustaining medical treatment] in which a parent, guardian, or prosecutor of the alleged abuser may have a conflict of interest."
In the Poutre case, some argue, the guardian appointed could also be considered to be a prosecutor of the alleged abuser.
Also, the AAP committees advise, "Decisions to forgo [life-sustaining medical treatment] for a critically ill child whose injuries are the result of abuse should be made using the same guidelines as those used for any critically ill child."
Leuthner suggests that if state law says withdrawing ANH in a patient who is in PVS is permitted, then if the patient or the patient’s guardian and physician believe to do so is in the patient’s best interest, age should probably not prevent that action.
"Once a child is declared PVS, ethically I think it is very reasonable to argue not to keep him or her in that state forever," he says.
- Robert M. Nelson, MD, PhD, associate professor, anesthesiology and critical care, University of Pennsylvania School of Medicine, The Children’s Hospital of Philadelphia. Phone: (215) 590-1000.
- Steven Leuthner, MD, MA, associate professor, pediatrics and bioethics, Center for the Study of Bioethics, Medical College of Wisconsin, Milwaukee. Phone: (414) 456-8296.