Dr. Gustavo Quintana, seen here in June, 2015, helps people with terminal illnesses end their lives.Fernando Vergara/The Associated Press
Colombia decriminalized medically assisted death in 2015, the first country in Latin America to take the step, but it went much further last May with a regulation that made the procedure available to children.
It was a particularly striking decision in a socially conservative country where almost 80 per cent of people identify as religious Roman Catholics and where the population of evangelical Christians is growing rapidly; the churches, which vocally oppose euthanasia, are a powerful political force.
Providing assisted death to children is a controversial subject even in the field of palliative care. Otherwise-outspoken advocates for the procedure here don’t talk about it. And families who may have availed themselves of it, entirely legally, have done so at home with private physicians and evaded the requirement to register such deaths with the Ministry of Health – to ensure no one finds out.
Canada’s medical assistance in dying law permits the procedure solely for people older than 18; there is no consensus in Canada about the ethics of providing it to children because it is so difficult to establish when a child is capable of making such a decision. Belgium allows children of all ages to choose assisted death if they have parental consent; the Netherlands permits children older than 12 to do so.
Colombia patterned much of its assisted-death regulation on Canada’s, and the original terms did not include children. But when the family of a desperately sick child appealed to the Constitutional Court, which supported their request, the Health Ministry expanded the regulation in May to offer the procedure to children as young as six.
As with adults, to qualify for the procedure, the child must be dying from an incurable condition, suffering from pain that cannot be managed in palliative care and must have the mental capacity to request and consent to the procedure. (The child whose case brought about the change did not qualify in the end because by that point he was unable to consent.)
“Doing this for children is a whole new world,” said Ricardo Luque Nunez, a doctor and bioethicist who is an adviser to the Colombian Ministry of Health and oversees this issue. And it’s not, he added, a particularly comfortable world.
Dr. Luque says only 38 people have requested assisted death through the health system in the four years since decriminalization – and none of them were children. But a physician who is an outspoken advocate of “death with dignity” says he has assisted in the deaths of more than 30 children whose families did not want to use the public system because it is too complex, or because they wanted privacy and feared public condemnation.
Confronted with the task of navigating the line between offering relief from suffering and assessing when a person is capable of making a conscious choice to die, the Colombian government decided on these rules: Children from ages six to 12 must be evaluated by a psychiatrist or psychologist who concludes they understand the choice, and the parents must consent; children aged 12 to 14 can request the procedure with their parents’ consent; and children older than 14 can request assisted death even if their parents are not in agreement.
“We looked at the literature on children and consciousness of death – and up to age six they don’t clearly understand death,” Dr. Luque said. “From age six onwards children can understand it, but it’s a magical idea – maybe you can come back to life. Only after 10 can you understand the inexorability of death, that it will happen to me and all others at some point. From 12, you have the cognitive and moral development at the level of making conscious moral decisions.”
Carmenza Ochoa, who heads an advocacy organization in the capital called the Dying with Dignity Foundation, says she understands the need to handle the issue cautiously. But the process is so bureaucratic and laborious that people aren’t using it, she says – though that doesn’t mean that people, including children, are not obtaining medical assistance in dying.
Gustavo Quintana, the doctor-cum-activist who has “provided euthanasia" to more than 30 children – and a total of almost 400 people – said Colombians continue to come to him for private help, rather than using the legal system, because "they can spend so much time getting evaluated that they die before the procedure.”
Many people say children are not capable of making the choice to die, he said in an interview in a café in Bogotá, but his personal feeling is that a child “becomes a full person at age seven and starts to understand little by little up to age 14.” Dr. Quintana would like to see the law modified so that parents can request the procedure for children who cannot; he argues that a child’s parents are capable of deciding when suffering is “intolerable.”
But Dr. Luque firmly rejects that idea: The key component of the Colombian regulation is that no one makes the decision for someone else. “You have to have limits that are very clear: that it’s a terminal illness and consent has not been given by others. The bioethical obligation is to protect the most vulnerable – in the debate over children this is very clear. And it’s terribly dangerous to open the door to debating who can decide for someone else.”
The slow movement toward permitting assisted death began here in 1996 with a new, more liberal constitution and a lowered sentence for “compassionate homicide.” When that law was challenged in court, judges said that if a person with a terminal illness requested assisted death from a doctor, she or he would face no penalty for providing it.
But, Ms. Ochoa said, few physicians offered the procedure because the terms of providing assisted death were not formalized in law. Attempts to codify it died in Congress because the issue was politically unpalatable. Then, in 2014, a woman suffering from intense pain with terminal cancer, who could find no doctor willing to assist her death, took her case to the Constitutional Court. She died before the verdict but the court ruled in her favour, giving Congress two years to pass a law and telling the Health Ministry to adopt regulations in the meantime.
Under the system the ministry put in place, a doctor must take the request to a “committee for dignified death” consisting of a psychiatrist or psychologist who verifies the patient’s mental capacity, a physician who verifies the terminal illness and unrelieved pain, and a lawyer who evaluates the request. Every public institution is meant to have one of these committees.
“But the great majority of hospitals are religious institutions and they are actively opposed,” Ms. Ochoa said. “People ask their doctors, and doctors say, ‘We don’t do that here.’ ” The regulation gives a doctor the right to refuse to perform the procedure but requires them to find one who will within 24 hours. Ms. Ochoa said 75 families appealed to her organization for help last year because there was no committee at the hospital where their loved ones were dying. Patients who are being cared for at home have to be taken by ambulance to appear before the committee; in many smaller towns, the nearest psychiatrist could be four hours away.
“We had a legal change, but need a social one," Ms. Ochoa said. "People fear what their friends or family will say – that it was a moral failing or a lack of love, that you did it because you didn’t want to take care of someone who was sick or suffering.” Doctors resist offering the procedure because they feel it means they failed, she said, and then there is the widely held Catholic belief that there is inherent value in suffering.
Congress, meanwhile, has not passed a new law, despite the court order. Alejandro Gaviria, who was the health minister when the procedure was decriminalized, said it was inevitable, but less than ideal, that it was a court ruling that legalized it. “We have not had a big national debate about this, and I’m not very happy about it," he said. “We need a public debate: We are not Belgium or Holland – this is at odds with people’s beliefs and mode of thought.”
But the administration in which he served was replaced by one considerably more conservative on social issues. Ms. Ochoa said she doesn’t expect a law, but she is confident the ministry did the right thing by expanding the regulation to include children – how could they have done anything else? “It would be very difficult to say to a child, ‘You must suffer at age 10, but if you reach 18 we will help you.'"