Wednesday, December 10, 2014

Is newborn euthanasia an answer to parent pain?

By Louise Kinross

I was surprised to see this headline on a CBC The Current story yesterday:
Newborns should have the right to die, ethicist says. Can newborns assert their rights?

The piece is framed as a discussion about euthanasia for newborns with severe, terminal illnesses.

One of the guests is Udo Schulklenk, a professor of philosophy and the Ontario Research Chair in Bioethics at Queen’s University.

He wrote
a paper defending euthanasia of some infants with severe, terminal conditions.

During the CBC interview, the
Dutch Groningen Protocol is referenced. The waters get muddy here as this protocol supports euthanasia not just for infants who will die imminently, but for those who have a poor prognosis and expected quality of life. For example, “a child with the most severe form of spina bifida will have an extremely poor quality of life, even after many operations,” write the authors of this paper describing the protocol in the New England Journal of Medicine.

Spina bifida is not a terminal condition (please see
Deliberate termination of life of newborns with spina bifida, a critical reappraisal)

The CBC interview doesn't make clear that the practice in the Netherlands includes euthanizing newborns with severe disabilities who are not terminally ill.

Udo argues that “once professionals have decided that further treatment would be futile and it’s a hopeless case, we ought to take into consideration whether or not the parents really want to sit by while treatment is withdrawn and while there is a prolonged period of time until eventually the newborn expires.”

Udo is referring to the process whereby nutrition and hydration provided by a nose or stomach tube is stopped and the child dies within days or weeks.

In 2013 the Royal Dutch Medical Association made a similar argument in
a policy (click on English press release) that supports giving a lethal injection to newborns with serious birth defects whose tube feeding had been withdrawn, because watching them die “causes severe suffering for the parents.”

Typically, Dutch pediatric medical ethics and law in children’s treatment decisions are based on “the child’s best interests”—not parent interests.

At the time, I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children’s Hospital, if the argument to include “parent suffering” as a basis for a child's treatment decision is problematic.

The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. “Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected.”

Dr. Stephen Liben, interviewed on CBC yesterday, disagreed with Udo Schulklenk that relieving parent suffering is a rationale for newborn euthanasia. 

What Udo is speaking to is the suffering of the parents who are watching their child die and it’s true, we can’t remove that suffering," said Dr. Liben, director of pediatric palliative care at Montreal Children's. "Children for the most part aren’t in pain, but the parents are in pain.

“The argument is being made that if you just end their child’s life now, their suffering will end sooner. I think that’s an argument that’s naïve... Is their suffering really over because their child has died? The suffering of the health-care professionals ends pretty quickly, we move on to the next patient...But for the families, how do we know how they feel years later, when a mother looks at a handicapped child smiling and laughing…and thinks ‘my goodness, how could I have asked the doctors, or allowed them, to end the life of my child?’”

When brain scans show severe brain damage in a newborn, Dr. Liben said, the decision is sometimes made to stop tube-feeding. But predicting how a newborn will be affected by brain injury is imprecise. 
“We're not really good at predicting what’s going to happen,” Dr. Liben said. “We have an idea of what the damage is, but we don’t really know for weeks and even know how those kids will be.”

Dr. Liben was asked whether parents ever change their minds when they’ve chosen to withdraw artificial feeds from their infant. “I’ve seen that several times now,” he said, explaining that in these cases “we start the feeds again” and the children have lived, though "I don't know what's happened to them 20 years later.

“I’ve also seen parents change their idea from Oh, my poor child, this is so horrible” to returning two to three years later to say “The doctors have to do more. I love my child, he’s handicapped, but he...interacts with the world.”

Rather than talking about euthanasia, Dr. Liben said we need to “improve access to palliative care. “I’ve been doing this for 20 years and I shudder to think of what could happen” if euthanasia of newborns was practised.

“Given the way healthcare really works—the way it isn’t all studied doctors and nurses who are comfortable with these things without prejudices in their own minds left, right and centre. Things don’t happen rapidly and equally. The real world out there is there aren’t ethical committees that rapidly convene with intelligent people discussing things all day long.

“This is not what goes on across the country and if the law changes it applies to everybody and I think there’s way more harm than good. Looking at our healthcare system I just see that it would be abused. Is it just coincidental that it’s going to be a cheaper way out for government and for certain hospitals that are under pressure? I don’t have confidence enough in the human factor that we can manage this humanely.”

Take a listen to the CBC piece. Much food for thought.


From your article Louise, Udo was quoted, "...once professionals have decided that further treatment would be futile and it’s a hopeless case..."

I think this is the heart of the issue. Who decides? Futility more often than not is a judgement of quality of life and whether treatment is "worth it". Parents in the intensive care setting rely on physicians for information to make informed decisions. As Udo points out, it is the doctors who decide. Consent is based on the information they choose to provide based on the answer they want parents to give. As this article reveals, doctors are far more likely to offer interventions when they believe quality of life is high.

The reality is that there is a limitation of the number of beds in the NICU and down the line, a limitation of therapists and home care nurses that are often required by the children who are targets of being labeled futile. How do these limitations affect the judgement of "futility" and determination of "lives worthy to be lived"?

Udo knows nothing about the lives of children with disabilities and their families. He has no right contributing to this conversation. I've yet to meet the parents of a child with significant disabilities (and I know hundreds) who wish they had euthanized their child after birth.

We surveyed the largest group of parents (372) ever on a cohort of parents who had a baby with the genetic conditions trisomy 13 or 18. These conditions would be high on Udo's target list for euthanasia. Surviving children have significant disability and a shortened life span.

Life worth living? Not according to most doctors and policy planners.

Our first paper was published in Pediatrics and after the editor issued a press release, there were over 50 media articles in 5 languages. We reported that parents of surviving children described them as happy and the experience of raising them as enriching. Although parents reported that it was financially challenging, and more work then they expected, most marriages were described as improving (with very few reporting a negative effect) and parents believed that the disabled child had a positive influence on siblings. There were no regrets.

Full Article: Open access

When did the medical community abandon healing/treating for killing? Death is not a medical 'cure' for my daughter with Trisomy 18! Doctors should not be using the caloric chart as a how-to-guide to starve my disabled daughter to death and have the audacity to call that a medical treatment. It is appalling to me that they would use all that valuable medical knowledge on how to properly medicate a patient to give lethal doses.

Doctors who hasten the death of their most vulnerable patients as a part of their routine care terrify me.

Where are parents going to find doctors who have developed treatments and innovations for the sick and disabled if the medical community keeps wiping the handicapped from the face of the earth?

It is a bizarre trail that leads from innovative medical care to medically sterile murder of disabled and unwanted people.

I guess the medical community abandoned healing/treating for killing back in the 30s, in the T4 program in Germany. Then we were ashamed for a while, but now it´s rapidly returning - sometimes hidden, like in Norway where some physicians see it as their duty to let a baby or child with trisomy 18 or other grave disability die sooner rather than later. They do this in various ways, like not treating them for acute emergency situations, such as airway obstruction due to phlegm, by placing DNR orders etc. This may be done either without the parents´ knowledge, or against parental wishes.
Sometimes more obvious methods are used, like withdrawing fluids and nutrition, and in some countries by lethal injections. All are variants of the same thing - a baby is not saved or is actively killed because his or her life is deemed as not worth living. The only one who can say anything about the child´s quality of life, is the child itself.
The children I know with trisomy 18 seem very happy with their lives, and medical litterature supports this notion, not only for trisomies, but also for premies who grow up, and for people with Down syndrome.
How can parents trust a medical system that allows physicians to not save, or to actively kill disabled babies?

Newborn euthanasia is already here. I was advised by doctors at a hospital not to feed my son and give him morphine for the pain until he died. We'd already agreed not to put in a g-tube and placed a DNR on his chart, but to just not feed him at all? That went too far. That was 11 years ago. At age 18 months, he finally did get a g-tube. He's 11 now. He has CP but is otherwise healthy.