Thursday, March 22, 2012

I say 'gobbledygook!'












I know nothing about philosophy in the academic sense.

And, after reading this paper published in the Journal of Medical Ethics, I have no interest in knowing anything about it.

In After-birth abortion: Why should the baby live? a philosopher and an ethicist argue that killing newborns – before they have neurological self-awareness – is ethical for children with disabilities, because it's assumed they would be an unbearable burden to their families and society. They also argue that infanticide is ethical for a healthy baby with no disabilities, if that baby might compromise the psychological, social or economic wellbeing of parents, siblings and society.

In a nutshell, Alberto Giubilini and Francesca Minerva argue that if a newborn is disabled, not wanted by his or her mother or too expensive, it's ethical for doctors to kill the baby.

In their article, the academics attribute the right to life only to individuals who can appreciate their existence and have ‘aims’ or dreams for the future, so that depriving the person of that life would be experienced as a loss. If individuals can’t value their life and plan for the future, because their brains are in the newborn state, or because they have a disability, the philosophers categorize them as non-persons who would not be harmed if killed.

“Merely being human is not in itself a reason for ascribing someone a right to life,” is how they so eloquently put it.

The philosopher/ethicist duo say that killing newborns who have severe mental and/or physical disabilities is ethical if the parents would have aborted the child in advance – if only they had the knowledge.

An example given is Treacher Collins syndrome, a rare genetic condition that Giubilini and Minerva describe as causing ‘facial deformity’ and physiological ‘failures,’ including potentially life-threatening respiratory problems.

Hmmmmmm. I thought. I remembered the name Treacher Collins because when my son was a toddler we visited an ear-nose-and-throat specialist at a world-renowned children's hospital who mentioned the syndrome in passing, noting that some of the facial differences were similar to those seen in my son. In fact, when telling us about Treacher Collins, the ENT said that Sylvester Stallone had the condition, and that while people with Treacher Collins had facial differences that required reconstructive surgery, they were intact intellectually and led full lives.

That doesn't seem to line up with the journal article's description of 'physiological failures' and life-threatening respiratory problems.

I did a quick search online and came across this blog by a young woman with Treacher Collins who is a physician in internal medicine, pediatrics and sleep medicine. She is also married and from the looks of the blog, loves her life.

Guibilini and Minerva note that people with Treacher Collins have typical intelligence so they would be aware of how ‘different’ they are and of all of their problems (seeming to imply that this would make death a better option).

They also tell us that 'many parents' would choose to have an abortion if they found out their child had Treacher Collins prenatally (not sure how they produce evidence of this claim, since it is not a standard syndrome tested for).

It seems to me that our philosopher and ethicist were looking for a syndrome that's not part of the regular prenatal testing battery to give an example of a situation in which parents don't have the option of aborting because they don't know of the diagnosis. Unfortunately, they didn't take much time to actually research Treacher Collins or speak to people living with it.

They lament the fact that in 18 registeries in Europe between 2005 and 2009, 'only' 64 per cent of ‘Down-syndrome cases’ (remember, we’re not talking people here), were detected prenatally, and that 1,700 babies with Down syndrome were born to parents who learned of the diagnosis at birth. For some reason, the philosophers don’t make the leap of understanding to consider that perhaps the parents of those 1,700 babies chose not to have prenatal testing because they decided to carry a child to term whether the child had Down syndrome or not.

They end this section with this bizarre statement: “Once these children are born, there is no choice for the parents but to keep the child, which sometimes is exactly what they would not have done if the disease had been diagnosed before birth.”

In this statement I can hear my 13-year-old son whining "It's not fair," and myself responding, "There are lots of things in life that aren't fair. But that's life."

Hello! Who said control over our circumstances is attainable in this life? Coming to grips with our vulnerability is part of the growing-up process which seems to have been lost on these academics. How would these philosophers ‘solve’ the problem of our mortality? Because I am sure there are many people who might not choose to die either.

But back to the article.

Giubilini and Minerva note that euthanasia in infants has been proposed by philosophers for children with severe abnormalities who meet two conditions: their lives are not worth living (they don’t define this – although we can assume from earlier comments that they equate an unworthy life with intellectual OR physical impairment that limits a person’s ability to envision or achieve their aims or dreams). The other condition is that they are experiencing unbearable suffering.

They tell us it is reasonable to predict that living with a severe condition is against the best interest of the newborn. They don’t say on what they base this prediction, but it’s interesting to note that while economists analyze quality-of-life years using models that assume low quality of life for people with chronic illness and disability, large-scale studies of self-reported satisfaction in people with disabilities paint a different picture.

Dr. Chris Feudtner, a pediatrician and director of the department of medical ethics at the Children's Hospital of Philadelphia went to great pains to describe this in a talk he gave at the Montreal Children's Hospital last year.

But our philosophers were not listening.

The article is full of contradictions -- on the one hand mentioning studies that find people with severe disabilities are happy, on the other, creating an image of the same people suffering unbearably.

Which one is it?

 They argue that the interests of ‘real people’ – who they define as parents, siblings and society at large – come before those of the newborn, who is a non-person, whether disabled or not. In fact, they suggest the term ‘after-birth abortion’ be used, rather than infanticide, because they compare the newborn to a fetus rather than a child.

“Actual people’s wellbeing could be threatened by the new (even if healthy) child requiring energy, money and care which the family might happen to be in short supply of,” they write.

And: “If a disease has not been detected during the pregnancy, if something went wrong during the delivery, or if economical, social or psychological circumstances change such that taking care of the offspring becomes an unbearable burden on someone, then people should be given the choice of not being forced to do something they can’t afford.” Since they believe the newborn does not yet exist as a person, they perceive the newborn as expendable.

Can't you hear that voice of my 13-year-old: "Why do I have to? It's not fair!"

Guibilini and Minerva even go so far as to say that a healthy newborn could ethically be killed rather than being placed for adoption because the idea of adoption might be more psychologically distressing to the mother.

The killing of disabled newborns would take place within a few days of the birth, they say, which they believe is enough time for the doctors to detect abnormalities. Further, in the case where a child is healthy, the killing can take place outside of any time threshhold as long as neurological assessments determine the child is not self-aware.

Minerva is quoted in the Daily Mail as saying: "This is not a proposal for law. This is pure academic discussion.”

The picture that runs with the piece shows a young woman (20-something?) who was formerly at Oxford and is now at the University of Melbourne.

Perhaps Minerva would like to consider the psychological 'harm' done to the wellbeing of 'real' families like ours who have to read her drivel? We can only hope that in the next few years she gains some life experience, is humbled and comes to her senses.

The editors of the Journal of Medical Ethics defended publishing the article in the name of intellectual freedom. I'm more interested in intellectual rigour.

Reactions:

16 comments:

I agree--it's gobbledygook! As I was reading it and getting horrified I started to wonder what they are really up to--because they can't honestly think that there's real value in the crazy argument they're making.

And that's when I decided that they must be pro-life and that I think they're trying to see how far they can push the arguments made for abortion before people are completely disgusted and horrified. At least I hope that's what they're trying to do.

I don't think the #1 crazy flaw in their twisted and illogical argument is that newborns do not have the same moral status as "actual persons."

It's the same sort of argument that led to mass executions of jews and disabled persons during the Holocaust. The authors are wrong--human is human.

I think that by even acknowledging this kind of one sided argument, we give it life. I would not consider myself on either end of this argument, but some place in between, It is very disturbing to think that someone may have these philosophies. I would put them in the same category as all of the bad leaders in history and consider them to be very uneducated.

I take a different position from the first two comments. I do not think this article is “gobbledygook.” I don't think that a journal of this reputation would publish "gobbledygook". Perhaps Louise, this is your response and feeling because you don't want to believe that anything like this is remotely possible. I understand.

Approximately 6 years ago, the Dutch Groningen Protocol was published. The Protocol outlined the condition in which certain newborns could be euthanized. These conditions were related to suffering (or perceived suffering) such as Trisomy 13 and 18 and spina bifida. The world responded to this publication with outrage, similar to the reaction of many to this article about "after-birth abortion." The publication did not lead the way however. I was informed by a reliable source that euthanasia for these children had occurred for years in Holland, behind closed curtains, in secret. This protocol is now generally accepted and the author appears to be respected in the international ethics community.

In a similar way, I believe that children with many conditions die by euthanasia in NICUs more frequently than we are prepared to believe or want to know about. Providers and those involved in this area know of the "window of opportunity" that exists in the NICU whereby parents have liberty to make certain decisions that will not be permitted outside of the NICU. It doesn't surprise me that this allowance would exist. It is not logical that the lives of certain children can be ended literally hours before birth (in Canada) and yet they are supposed to be cherished and protected by law after birth.

At last year's Canadian Pediatric Society conference, there was a talk on euthanasia. The audience was told of a case where parents demanded euthanasia for their newborn who had a condition that would result in several surgeries and medical fragility for the first year, but would be "normal" after that. One doctor in the audience told of parents who were professors who had labor threatening early delivery of their unborn at 25 weeks. It is standard care to resuscitate at this age. After hearing the risks, the parents asked that their child be left to die without resuscitation because they wanted "an academic child."

My prediction is that euthanasia of children with certain conditions will be an accepted, open practice in a few years. I only hope that it occurs with the informed consent of the parents.

I think this progression is inevitable as people in our society refuse to take their heads out of the sand and ask questions about prenatal terminations for anomalies and the effect on children who are born and on society in general. Does informed consent exist? What information are parents given? What effect does the shortage of community supports have on decisions that are made by parents before birth or on treatments that are offered by doctors after birth? What are the trends in choices made before birth and on surgeries offered to children who are born? Do priority-setting strategies for children place children with prenatally "preventable" conditions (through termination) at the bottom of the list?

The issue is not about removing choice but about being a responsible society by asking the questions that need to be asked and ensuring that we are on the right path. Before we write off this article, I think we have to take a good hard look at the impact of our quest for the perfect child.

I agree--it's gobbledygook! Every newborn is human & entitled to live life whether disabled or not.
I think the 2 authors of that discussion are sick - it is as though they have a severe disease of mind-set & that they feel the need to "give it life" by publishing it for the masses to read! Though it brings up the interesting & bizarre thought that if their own parents/culture/society had thought the way they purpose that they themselves may have never made it past being born! It is the same category as the Holocaust.

Anon is correct. There are no abortion laws in this country. You can choose to abort up to the last possible moment and I suspect many do if the child is proven to be disabled in any way. We assume it's only the first 3mths but it's not.

I also agree with Anon that much of that choice is based on the lack of services once that are avaible once that child is born. There isn't any. Oh, we have a few programs here and there but at the end of the day there is no supports unless you spend HOURS digging for the few that there are. Then there are those "adults" that swarm parents and claim that we don't know anything.... and people want nothing to do with having a disabled child.

I'm lucky and I know it. I have one that's gone from mild, non-verbal, high behavioural PDD to mild behavioural, ADHD at 12 and my 10yr old severely autistic one is easy going and also making huge gains even with the severity of his autism. This allows us to "live with not for" autism, to have regular teenage babysitters, and a life.

Many people don't and as the media reports all too regularly the outcomes are horrible.

Personally, I opted out of the genetic testing... but it was a personal decision and I will not fling stones ever at someone that made choices based on the testing.

What strikes me is how the article completely ignores the emerging ethnobiologist argument that newborns are not tabla rasas. They are born with attributes and skills for their own survival, see Our Babies, Ourselves. Crying, newborn reflexes, even the enlarged eyes are all intentional in our evolution to illicit bonding from the adult population. Therefore, I find major fault with the 3 precepts outlined in the abstract that a newborn is a potential person. Typical or disabled, they've got innate wills and skills just like actual people. And when does the definition of actual people begin? 6 months, 2 years, 7 years?

I disagree with the predictions and "progression is inevitable" comments of Anon. There is no march of time or policy or ethics that is not consciously molded, civil liberties were hard fought and won and theories like this can be just as righteously argued and won. But it takes an action agent.

I don't believe ideas are dangerous, but I do believe poorly constructed arguments in the wrong ideologue hands are dangerous.

Sure, you can consider the "emerging ethnobiologist's arguments" as an argument to refute the article. But is that hope valid?

While looking forward at new theories, consider also looking back in history. Has mankind ever been capable of causing death to disabled newborns or newborns with dysmorphic features? Is this in the realm of possibility?

Also consider what we know now. Do infants with disfiguring or disabling conditions ever die unexpectedly? Also, what are the conditions under which accepted practice allows for death of newborns by dehydration?

When researching Anon's mention of the practice of infant death by dehydration (which is inhumane), I found this 2008 article from the nursing community on caring for disabled or underdeveloped infants in the NICU:

http://www.americannursetoday.com/article.aspx?id=4436&fid=4422

It doesn't sound like death by dehydration is an accepted practice. We do not live in a just world, and I will accept that inhumane deaths occur, but our intentions should be to care and treat infants as any other-aged human. I agree with Amanda's argument that our policies and ethics are hard fought and won, and would add that inevitability is unlikely in such a hotly debated topic area.

I just did a quick search and came up with this recent journal article (but it's not free!)

Withdrawal of artificial nutrition and hydration in the Neonatal Intensive Care Unit: parental perspectives
Arch Dis Child Fetal Neonatal Ed fetalneonatal-2012-301658Published Online First: 23 March 2012

And this from the American Academy of Pediatrics:

Forgoing Medically Provided Nutrition and Hydration in Children (not just newborns)

http://pediatrics.aappublications.org/content/124/2/813.full

Here is the position statement of the Canadian Paediatric Society on the topic of withholding fluids and nutrition from children.

http://www.cps.ca/english/statements/B/NutritionHydration.pdf

The position statement states that indications for withholding fluids and nutrition include "neurological impairment
leading to an inability to feed orally and/or risk of aspiration."

There was a bioethics talk on this subject at the Hospital for Sick Children on January 18, 2007. The poster for the talk stated, "While in the past this [withdrawal of fluids and nutrition] was a rare occurrence it is being increasingly considered today..."

Thanks for these articles, Bloom. After reading I should clarify my thinking in saying that death by dehydration does not seem to be an accepted practice in instances such as those mentioned in the Journal of Medical Ethics article from the original post (disability, expensive medical care, poor quality of life). Even under the limited circumstances in the Pediatrics article, I would hope that parents would only withdraw fluids and nutrition if not doing so would cause greater immediate suffering and harm. Medicine can be quite wrong about predicting life expectancy and quality of life. Important discussion here...

I read this article with great interest. And thank you to the person who posted the Canadian Pediatric Society's position statement on withholding fluids and nutrition.

In that statement, they say it is okay to withhold Artificial Nutrition and Hydration in some cases. "Artificial" being something like a g-tube, NG tube or through IV. They also say that "Children who are able and wish to eat and drink should be offered food and fluids by mouth."

The statement was written in 2011. I'm glad they've issued such a statement. In 2003, the NICU pediatrician advised us that we had the option of NOT providing food and fluids by mouth to our newborn. The hospital would provide intravenous morphine for pain relief while our newborn starved / died of dehydration. I was horrified by this suggestion. Its not the legally allowed infanticide but it was still happening or at least being offered as an option.

We decided not to ignore the medical advice and allow our baby to eat and drink by mouth. He's 8 now, has Cerebral Palsy but is otherwise very healthy.

I'd like to see a position statement governing physicians who make predictive statements because when we go to the Ontario Federation of Cerebral Palsy conferences, we're sitting in a room with 200 or so adults who all have a story from early childhood about why they won't live for long.

Pamela

Pamela, thank you for sharing your experience. I am somewhat alarmed that you were offered an opportunity to withhold fluids/nutrition when your infant was capable of taking nutrition by mouth. I had understood that infants who could suck/swallow would not be denied nutrition.

It might be that the inaccurate prognostications doctors make are partly related to the doctors' own anti-disability bias. It has long been known that persons with disabilities rate their quality of life much higher than healthcare providers. (The Disability Paradox, Albrecht 1999)

Perhaps this bias is increasingly becoming related to the limitations in community services for disabled children. Some would say it is wrong to prolong or sustain life for a child for whom society cannot provide adequate supports. Another possible factor is bedside rationing. The present value of expected costs of a disabled child- especially one that will require intensive supports at school, is quite high.

As healthcare resources become more strained, I think it is important to monitor various statistical trends related to the NICU and disabled children with a goal to ultimately ensure that parents who value the lives of their children (regardless of the degree of disability) and who have the ability to make the necessary commitments to them are not denied that choice.

As for the "after birth abortion" of newborns whose parents would have elected to terminate pregnancy if a diagnosis had not been missed, I believe that this does and will continue to occur. My concern relates to informed consent for such deaths.

Hi Pamela -- I'm very grateful you've shared your experience.

Perhaps you could write a guest blog for us? If you may be interested, pls e-mail me at lkinross@hollandbloorview.ca

(It could also be written anonymously).

About 2 years ago I sat in an NICU waiting room with a group of parents. They were talking about how the doctors were pressuring them to withdraw care from their preemies because of predicted disabilities. In one instance, a mom said: "I know he may have CP, but he's still my son!"

It was a chilling experience to be a fly on the wall in that situation.

All I know is my son was born with Treacher-Collins Syndrome undiagnosed after a wonderful pregnancy and the best medical care including 3D sonograms. He had no ears, a strange shaped nose, down-slanting eyes, and a small chin. He was also 5 lbs and couldn't eat by mouth much because he was aspirating. My husband and I spent that horrible first night alone just crying and hugging each other and admitting our darkest thoughts, not knowing if we could handle this, we didn't known what he had, if he was retarded or blind or what. But the next morning the cranio-facial team came in and gave us the diagnosis and said he'll be healthy and maybe need some surgeries in the future but could hear with a hearing aid just fine. I breathed finally and started to bond with that little sorry skinny peanut and he started to grow on me. He was in the NICU a few weeks and ended up with a G-tube. I was already in love with him and did everything I could. I got him the hearing aid and got early intervention immediately to help with his feeding and speech therapy too. He was off the tube and eating by mouth in 6 months!! Now he is 18 months old, absolutely adorable, and by filling out his nose looks much better, his eyes
look almost normal, his curly hair hides his ears and he is running and laughing and adorable and advanced for his age in almost all categories. The Drs can't believe his progress and people that see him on the street comment on how adorable he is and how smart he is. I love him more than I have ever loved anything and walk around so proudly with him. It has been a tough journey but the most rewarding and fulfilling and I can't wait to see him grow and learn everyday. So I guess my point is that Drs do not have a crystal ball and you never know what can happen but I had the love to give a baby and I did it, because you can't regret giving your best. If i gave up I'd never know what could have been and i'd probably be racked with guilt the rest of my life. I'm sure i could have rationalized it, but i'd know deep down I gave up. FYI I'm not a pro-lifer and am fine with early abortions if you know you can't care for your baby for whatever reason. Giving birth to a sick or deformed child is incredibly difficult and heart-wrenching, but there is a light at the end of the tunnel, and least there was for me, and I wouldn't change a thing.