I came across this article from a philosopher who apparently does bioethics, the title is, ‘what should we do about severely impaired newborns?’ The article is a report (by the philosopher) of a debate at the American Association of Thoracic Surgery.
The problem, simply put, is this: Every year a small number of fetuses are carried to term who have no reasonable chance of living a life worth living. They are so severely impaired that they will live a miserable, short life until they eventually expire. The good news is that, courtesy of prenatal screening, only few such births take place and the numbers are decreasing. We have some data from the Netherlands, where a few hundred out of about 200,000 newborns annually tend to fall into this category.
We can immediately here see the problem. He is ignorant. He has no idea what he is talking about: what antenatal diagnosis gives a fetus ‘no reasonable chance of a life worth living’? One could perhaps include anencephaly, and complete hydranencephaly where there is no ability to perceive the world at a conscious level, but apart from those 2 rare diagnoses, I am not sure there is anything else that would fit that definition, in my opinion. There are many diagnoses that are life-limiting, many that lead to serious impairment, but to automatically assume that a short life with impairments is not worth living is to ignore the experience of families who have been there. Furthermore a life with impairments is not necessarily miserable, at all. In Saroj Saigal’s study, if I remember right, the only person who rated their quality of life as being below zero, i.e. worse than being dead, was one of the non-impaired full term controls (probably someone suffering from depression).
The ‘good news’ as he puts it, also has nothing to do with predictions of being miserable. The majority of terminations for fetal anomaly are of fetuses who could easily survive and have long happy lives, such as trisomy 21, or surgically treatable lesions. Termination for an ‘impairment’ that is severely life limiting and predicts a miserable life, if we could even do that, is rare. In addition the title of the debate was ‘Can a Physician Ever Justifiably Euthanize a Severely Disabled Newborn’. Confusing impairments and disability is something a philosopher should certainly not do, I thought the meaning and implications of words were quite important to them.
In addition, where on earth does he get the figure ‘a few hundred’ from? It seems he made it up. In a recent publication covering 5 years in the Netherlands there were 2 cases of neonatal euthanasia, both of them for epidermolysis bullosa letalis, which is certainly not what most people would consider an impairment (even though it is a very serious and unpleasant disease, where the skin forms blisters at the slightest contact, and then separates, leading to pain and infections, and eventually, as the name implies, death).
Well, the topic of our debate was a dicey one. We were given a scenario whereby the child’s prospect were sufficiently miserable that the attending doctors suggested to parents – among other options – the withdrawal of nutrition and hydration while providing palliative care to ensure the newborn does not suffer unnecessarily, as well as active euthanasia. The outcome of both scenarios: the death of the child. The jurisdiction where our case played out permitted the active ending of the newborn’s life.
There are only 2 scenarios where withdrawal of fluids and nutrition are considered in neonatology, one is in severely brain injured (almost always full-term) newborns, who are so profoundly injured that they show no signs that they experience hunger or thirst, or alternatively, cases of lethal intestinal failure, where there is no way to provide fluids and nutrition by the GI tract. Both of these are ethically challenging; in the first group the infants tend to have a brain which is so severely damaged that they don’t appear to be conscious, make no eye contact and don’t usually show signs of ‘suffering’, although certainly everyone around them is suffering. These are infants for who, the only prospect is a life without human interaction and supported by medically administered nutrition, i.e. tube-feeding. There may be a debate to be had for such children, what kinds of interventions around the end of life are appropriate? But that certainly is not the kind of infant that is implied in the title of the debate, nor in the other comments he makes in this article
…… Would it make much sense to undertake significant surgery with the – unlikely but possible – result that the newborn might live a miserable life for another year or two before his impairment eventually catches up with him and kills him?
This is incomprehensible drivel, I don’t know how Udo Schuklenk (the philosopher’s name) thinks we can predict misery, although there are certainly some situations where children experience pain, these usually have nothing to do with impairment, and pain can almost always be controlled. What kind of impairment catches up with children and kills them? I know he is trying ot use colorful, metaphorical language, but it conjours up images of cerebral palsy chasing after children trying to suffocate them!
…On the one hand we have – typically – religiously motivated opponents of euthanasia for severely impaired newborns.
I am certainly not religiously motivated, far from it, and the fact that I value the lives of all babies, regardless of impairment, is based on our common humanity, on the belief that being smart doesn’t make you more worthwhile as a person than someone who is less smart, that the value of a life is not correlated with the number or severity of impairments
The distinguished theologian panel member who I debated argued that we should let nature takes its course, that we should provide clinical care not aimed at shortening the newborn’s life and that we should eventually let nature takes its course. The problem with the nature-takings-its-course argument is that we invented medicine to stop or delay nature from taking its brutal course. So, the letting nature take its course argument was a non-starter.
I agree that this argument is a non-starter, if we let nature take its course, then the average life expectancy would still be about 25 years!
….If we merely go by the newborn’s quality of life and life prospects it seems indeed best to end the unfolding tragedy sooner rather than later, but probably a decision should be arrived at with parental consent as opposed to against the unfortunate parents. It turns out that one can reasonably answer the rhetorical question of whether one would want to live in a society that terminated the lives of certain severely impaired newborns if one held the view – as I do – that the newborn’s current and future quality of life is all that matters here. I could live in such a society where empathy for human suffering trumps religious conviction.
And so could I, but you need to have some understanding of what you are dealing with, some experience of dealing with families who are going through these terrible ordeals, and some basic medical understanding of the conditions that they face. Knowledge of the quality of life as experienced by families, and whether children with impairments are often ‘suffering’ or not would be a good start. The idea that we can predict misery is profoundly misled. The lives of children with impairments may sometimes be considered to be an ‘unfolding tragedy’ but that is more commonly the case when you ask the opinions of caregivers, rather than parents or families. Finding ways to support and assist these families, to provide respite care and counseling, to improve rather than shorten their lives; those are goals that I think we should be aiming for as a society.
I won’t say much more about the debate, but I think it is very strange that a society of thoracic surgeons would ask a theologian and a philosopher to debate things that neonatologists actually have to deal with. I actually think that people with those backgrounds might sometimes have important things to add to such a debate, but first of all we need to educate them, and make sure they have some basic understanding of the issues. A medically trained participant in that debate could have, primarily, clarified the question and made the case description appropriate to the question, then could have explained the real dilemmas that are faced, and could have described the medical options that most philosophers and theologians have no training to consider.
Neonatal Research 
Thank you. I am the mother of a child born at 23 weeks gestation. In two previous jobs I (a) worked with non verbal and non ambulatory adults and (b) a decade later worked with philosophers (including a medical ethicist). In casual conversation with philosophy students and professors, even before my son was born, I would question any definition of personhood that excluded the clients that became friends in my first job. Those individuals, despite their limited vocabulary and lack of formal education, taught me more about living a good life than I ever learned in college or grad school.
It was those friends I had in mind when we told the neonatologist to recussitateour son at birth. We knew that a chance at life – even a nonverbal life in a wheelchair – would be worth it.
Sometimes people argue that if parents really knew what they were getting themselves and their child into, they’d choose comfort care. I disagree. I knew what my son’s life could look like – I had cared for the severely disabled – and I knew what joy could still come fora life like that. And I wanted my son to know the joy of life.
I have often thought the words you penned here and am so glad you put this out here. Thank you for this.
In other news, not that it matters to this comment (but for the curious) my almost two year old has mild PVL, is small, nearsighted, and has very mild BPD. That’s it. He talks and he walks and he’s funny and he loves his family. Maybe he’ll be klutzy and weakly as a kindergartener, but that might have been true anyway.
Couldn’t agree with you more. I read this “debate” recently and was so put off, I didn’t even respond. Maybe I should have.
I too was disturbed by the editorial. I respond at my blog Bad Cripple. Here is a link:
http://badcripple.blogspot.com/search?updated-max=2014-05-12T05:20:00-07:00&max-results=7
Thank you so much for the link to your response on your blog, which I think is substantially more complete and effective than mine.
Keith
I appreciate the kind words. The editorial really bothered me in that it was grossly misleading. I was also delighted to see you reference Barb Farlow’s important work on Trisomy.
Thank you for this very important article. It is an area that should be discussed far more extensively, and indeed with the right parties involved.
I’m working for the International Federation for Spina Bifida and Hydrocephalus, and I can’t count the number of times people have told me their parents were advised to terminate the pregnancy, or, in countries where this is considered an option, once the baby was born, to leave their children in the hospital and/or to leave them in orphanages and forget about them.
While Francesca Minerva wrote in a comment to Schuklenk’s column that “we are talking about children who will die within a few weeks/months and who will experience a lot of pain during their limited and short life”, this is not what Schuklenk is writing about. He starts off his column by explaining it is about fetuses carried to term “who have no reasonable chance of living a life worth living” and propagates a “quality-of-life ethic”. Where he calls “human dignity” a question-begging term, the same could be said about “quality of life”. It too can mean different things to different people.
The Royal Dutch Medical Association acknowledged that the Groningen Protocol wasn’t working very well and has written its own guidelines. On their (Dutch) page there is a link to an English press release, just below the heading, which states: “Around 175,000 babies are born each year in the Netherlands. Most of them are perfectly healthy, but around 650 infants will die, usually as a result of very severe congenital defects and in spite of the best possible intensive care treatment. …”: http://knmg.artsennet.nl/Publicaties/KNMGpublicatie-levenseinde/133255/Standpunt-Medische-beslissingen-rond-het-levenseinde-bij-pasgeborenen-met-zeer-ernstige-afwijkingen-2013.htm
It brings up the term “medical futile”, and goes on to say: “These are babies who (1) in spite of very intensive treatment are certain to die in the short term, (2) babies with a poor prognosis and very poor expected quality of life, or (3) babies who are not dependent on intensive treatment but who face a life of severe suffering with no prospect of improvement.” (I’ve added the numbers.) There clearly is a huge difference between (1) “certain to die in the short term” and the other 2.
In 2007, Wendy Jane Gagen and Jeffrey P Bishop wrote an excellent article, Ethics, justification and the prevention of spina bifida, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2598205/. They talk about “the silences about ethics”. While some are now apparently trying to break that silence, it would indeed be most welcome if they did that well informed.
With respect to spina bifida there are a huge number of issues that you touch on in your comment. The first comment I would make is that screening and pregnancy termination should be referred to as such, not as ‘prevention’. Prevention is universal folate supplementation for primary prevention, and enhanced folate protocols for secondary prevention. When articles are published referring to prevention, and they really mean screening and termination, I think they are trying to hide something.
The second point I would make is that pregnancy screening programs must be accompanied by truthful balanced information. Most families faced with the diagnosis have little idea of the realities of the lives of children and families with spina bifida, nor of the range of possibilities that there are; and most professionals also, in my experience, paint an excessively negative picture of the impairments and disabilities of affected children. Indeed the way we talk about these issues (not just for spina bifida) tends to be that we talk about disabilities, and not about abilities. Your experience that parents are advised to terminate their pregnancies is I think extremely common, and the ‘advice’ is often repeated at every antenatal visit, as some caregivers have difficulty accepting that a well-informed family can make a reasonable decision to continue the pregnancy. Often the family is better informed than some of the medical team!
Thirdly, ‘suffering’ has been used as a term to refer to such children, whereas studies from the Netherlands (Ottenhoff MJ, et al. Discomfort and Pain in Newborns With Myelomeningocele: A Prospective Evaluation. Pediatrics. 2012) show little pain or discomfort. So if by ‘suffering’ you mean pain, then the babies with spina bifida certainly don’t qualify for number 3 in the report that you are referring to.
Finally, (for now!) I think that you are right that these debates must include the ‘right parties’ and the ‘right parties’ must include families. For too long medical professionals (or even worse self-proclaimed experts on bioethics with little understanding of the real issues) have struck working groups, held conferences or debates, and published ‘learned’ documents and opinions, and the voices of those most affected have been excluded.
Thank you, Keith, for the in-depth response, and apologies if my words may have given the wrong impression. I agree wholeheartedly with your post, and with your reply!
The only reason I used the word “prevention” is because that is the title of the Gagen article. The “silences about ethics” the authors speak of, is about the (undebated) coupling of prenatal screening and termination of pregnancy, and how this was/is seen by some as prevention.
Our organisation advocates for mandatory fortification of flour with folic acid, as introduced in the US and many other countries, because studies keep showing that the use of folic acid supplements by women of childbearing age, even when they are planning a pregnancy, is still far from optimal. But that’s another topic, although related to this one.
I quoted the study here, because the same “silence” seems to be surrounding the termination of the lives of newborns. There was some dialogue after the publication of the Groningen protocol and the “After-birth abortion” article by Giubilini and Minerva, but that soon died out.
Similarly, I only used the word “suffering” when quoting the Dutch criteria which are to be applied when deciding to end the life of a newborn. The criterion “face a life of severe suffering” certainly raises questions, as does the “very poor expected quality of life”. In 2008, Dr Rob de Jong from the Netherlands already published “Deliberate termination of life of newborns with spina bifida, a critical reappraisal” on this issue: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2092440/.
Assumptions, stigma, negative information, lack of information, outdated information, are issues that have surrounded Spina Bifida (and Hydrocephalus) for a long time and continue to do so. On an international scale, there is still “selective treatment” because of this.
As you described so eloquently in your post, “Knowledge of the quality of life as experienced by families, and whether children with impairments are often ‘suffering’ or not would be a good start”. Couldn’t agree with you more.
(More information on the termination of life of newborns and the Groningen protocol can be found on our website: http://ifglobal.org/en/what-we-do/priorities/human-rights/termination-of-life)
I certainly wasn’t meaning to be critical, I did realize that you were quoting ‘prevention’ and ‘suffering’. I was trying to point out that exactly how we use words is important. I have seen fetuses who would have had a very good chance of a great quality of life being terminated because every one involved gave inaccurate and negative information; just because the words ‘spina bifida’ were used. Much like the situation for trisomy 13 and 18, if you listen to parents, and watch their youtube videos and visit their support groups, you get an understanding of the lived experience which is diametrically different to the picture painted by most medical professionals.