The medical treatment of a seriously ill three-year-old girl at the Maastricht UMC+ may be stopped next Tuesday. The parents wanted to force further treatment through the courts but are refraining from appealing. How exceptional is this?
The case began when the girl’s parents disagreed with the doctors’ decision that further treatment was pointless. It is against their religious beliefs to stop treatment while the girl’s heart is still beating. The girl has a rare genetic disease. She has been kept artificially alive since the end of February.
The girl can respond to her environment. For example, a nurse stated that the girl likes to watch Peppa Pig on the iPad. “She enjoys it when the clinic clowns come.” The nurse noticed that the girl has become gloomier during the admission. “Only with distraction can a small smile be conjured on her face.”
The hospital does not deny that the girl has good days, but that does not mean she does not suffer. For example, objective measurements of, for example, heart rate and blood pressure indicate that the girl is in pain and stress. She is also regularly anxious.
Sometimes she even experiences mortal fear, a pediatrician stated: “At times when she is awake and acutely gets into trouble from mucus that she cannot swallow or cough up. She literally chokes and has acute mortal fear.”
The hospital believes that continuing treatment is not only medically irresponsible but also contrary to the law and the professional standards that doctors must adhere to. “A doctor must provide good and responsible care,” the doctors’ federation KNMG emphasized to NU.nl on Thursday. That means that doctors are not allowed to continue treatment if this is considered “medically pointless.”
When is there medical futility?
The KNMG describes medically futile actions as follows: “If the expected effect of the treatment is insufficient (effectiveness); there is no longer a reasonable relationship between the intended goal and the resources to be used (proportionality); and/or it is no longer possible to achieve an intended minimum level of functioning.”
‘Judge follows careful medical decision’
The judge ruled in favor of the doctors in the case brought by the family. Lawsuits about this are rare, says professor of health law Johan Legemaate. “We are talking about four to five cases since 1999.”
In the cases that are conducted, the judge almost always rules in favor of the hospital. That has to do with Dutch patient legislation. It states that healthcare providers may deviate from the wishes of family members if that is in the patient’s interest.
“If it is a careful decision, then litigation is not very useful,” says Legemaate. “If a medical team makes a well-substantiated decision, then there is a very good chance that the judge will follow it.” The KNMG adds: “The judge does not sit in the doctor’s chair.”
The judge also says that the decision to stop treatment is a medical decision. “That must be taken by the doctors. The parents, who have parental authority over the girl, do not have to give permission for this.”
Doctors do not expect improvement
The doctors do not expect the girl to get better. Due to the damage she has already suffered, she will most likely no longer be able to talk, chew, swallow and cough. “In the Netherlands, children with progressive muscle weakness are not invasively continuously ventilated,” a doctor told the judge. The fact that this happened with this girl is because the doctors did not yet know what she had when they intubated her.
The judge mentions that the girl was examined by doctors from two other hospitals. “They agree with the assessment of the doctors in Maastricht: the girl’s suffering is hopeless, and further treatment is medically pointless,” the court writes.
It is more common for representatives of a patient to disagree with a decision by doctors. For example, it is difficult to explain if doctors in other countries do continue treatment. “That sometimes leads to intense and difficult conversations,” says Legemaate. “But of course, we must adhere to what are the prevailing views in the Netherlands.”
For doctors, it is often a difficult decision to stop care if that means that a patient will then die, the KNMG adds. Even if the treatment is medically pointless. The doctors’ organization can imagine that it is even more difficult when it concerns a young child and the parents cannot agree with the decision. “But a doctor may not continue a medically futile treatment.”